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ESRD Beneficiary Focused Learning Network Special Project

Environmental Scan Report

February 2012

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Environmental Scan

Table of Contents I. Background and Scope of Work ..................................................................................................................4 II. Methods of Data Capturing..........................................................................................................................4 Keyword groupings……………………………………………………………………………………………………………………..5 Environmental Scan through Blog Analysis......................................................................................6 Environmental Scan through Video Analysis……………………………….…………………………………………….17 III. Findings ......................................................................................................................................................18 IV. Conclusion ..................................................................................................................................................20 V. References ……………………………………………………………………….…….………………………………………………………….…20 Appendices………………………………………………………………………………............................................................................21 Appendix A Environmental Scan through Blog Analysis ………………..…........................................................21 bigdandme.wordpress.com/..……………………………………………………………………………………………………………….21 www.davita.com/forum/showthread.php?t=11974..............................................................................................23 www.chron.com/news/article/Ohio-patients-celebrate-saving-power-of-dialysis-3341306.php.........................31 www.donatelifeillinois.org/.......................................................................................................................33

www.fbkidneydisease.info/kidney-disease/....................................................................................................34 fsgssucks/blogspot.com ………………………………………………………………….....................................................................50 www.hemodoc.com................................................................................................................................................54 www.ihatedialysis.com/..........................................................................................................................................58 www.kamaldshah.com............................................................................................................................................94 www.kidneyblogsite.com........................................................................................................................................99 www.kidneypatientnews.org.................................................................................................................................101 www.lindagromkomdkidneycare.blogspot.com/..................................................................................................108 livingwithpkd.blogspot.com/...................................................................................................................................74 www.nytimes.com/2012/02/19/health/lack-of-unified-system-hampers-kidney-transplants.html?pagewanted=all pkdkidney.blogspot.com/2012/02/kidney-transplant-chain-sets-record.html……………………………………………………111 paddlingondialysisforkidneyhealth.blogspot.com/................................................................................................119

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renaltsar.blogspot.com/.........................................................................................................................................120 Video www.fbkidneydisease.info/videos/kenneth-weal-blog-14-systemic-lupus-erythematosus-with-kidney-disease-nephritic-syndrome-2.html Appendix B Keyword List ……………………………………………………….……..…...................................................................124

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Preface

The topics that surfaced for the February 2012 scan report were transplant and concerns for dialysis patients or family members with ESRD.

Background and Scope of Work This environmental scan provides a systematic overview of the external factors that are relevant to Beneficiary Experience. The goal of this environmental scan is to review various media related to the beneficiary experience and to increase the understanding of the beneficiary’s view of dialysis care. Another dimension added to this Environmental Scan is the language of blogs posted by users. Rains and Keating (2011) explored “… the social dimension of health-related blogs by examining blogging as a means to marshal social support and, as a result, achieve some of the health benefits associated with supportive communication” (p. 511). Their research included a total of 121 individuals who author a blog dedicated to their experience living with a specific health condition. “The number of blog posts by respondents and proportion of posts with reader comments were positively associated with perceived social support from blog readers.” This evidence supports the findings and content in blogs reviewed for this report.

Methods of Capturing Data

(This section will be developed in more detail as we near the completion of the Environmental Scan Tool) The Environmental Scan Tool is as much a tool as it is a process. Figure 1 depicts the process used to capture data from blogs. The first step is to search the web for blog sites that contain the keywords listed in the keyword groupings. These keyword groupings contain 120 keywords. A complete list is provided in Appendix B. Next, blog content is extracted and converted to text files. Text files are imported into a qualitative application called Atlas Ti. The entire code list is imported into Atlas Ti. A comprehensive query is conducted for references to the keywords. Blog content is then review for significant quotes that can be extracted. Using a grep (g/re/p (global / regular expression / print) command, keywords from each blog are quantified. Since many blog writers do not use the language listed (keywords), blogs are read and analyzed for appropriateness and how statements might align to the keywords. Content is then summarized for the Environmental Scan.

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Keyword Groupings Keyword categories: Satisfaction Hospitalization Transitions and Coordination of Care Dialysis Experience Vascular Access Modality Knowledge of ESRD Self Management – Care Self Management – decision making Bundling Anemia Management Added keywords: Diet Cycler

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Environmental Scan through Blog Analysis

Table 1

The keyword 'diet' was added to the scan this month.

Frequency = 3 This is the first posting discovered in this blog. There are (2) blog postings in bigdandme.wordpress.com.

Table 2

The keyword 'diet' was added to the scan this month. F = 7 The keyword 'cycler' was added to the scan this month. F = 8

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There were (19) postings on www.davita.com for the month of February 2012. As reported in the months of November 2011 through January 2012, the data reflects high frequency instances of the coding buckets for satisfaction, dialysis experience, modality, and knowledge of ESRD. Table 3

Table 4

Table shows a new entry for the month of February 2012. The www.donatelifeillinois.org surfaced as blog posting with only one reference to modality.

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Table 5

Table 6

The keyword 'diet' was added to the scan this month. Frequency = 4

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Table 7

A few weeks ago, I completed an application to take part in the National Kidney Foundation's advocacy program. The timing seriously couldn't be worse, considering my move and everything, but I feel so passionately about educating people that I couldn't pass up the chance, and I'm so glad I didn't because I got off the phone tonight with the NKF and I'M GOING!!!! I feel so very honored as only 20 people were selected!!! I'll fly out on March 7th, and we'll be doing a training session in the afternoon. There will be an event that evening, and then spending the next day on the hill talking to members of Congress, educating them about NKF initiatives (including extended Medicare coverage for immuno-suppressants for transplant patients) as well as just educating them about kidney disease. And then I'll fly home the evening of March 8th, which is World Kidney Day. I'm so excited. I can't WAIT to share this experience with you!!!!!

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Table 8

There were 18 blog postings on www.hemodoc.com for the month of February 2012. Thirteen (13) of the posts were applicable to this environmental scan report. Special notice should be given to the content in the blogs for this month. For example, the writer states: “Several surveys have documented this unique American nephrology failing: Patient education and access of ESRD patients to renal replacement therapies beyond in-center hemodialysis RESULTS: Substantial proportions of patients were unaware of their kidney disease (36%) or were not seeing a nephrologist (36%) until <4 months before first dialysis. The presentation of treatment options was delayed (48% either after or < 1 month before the first dialysis). The majority of ESRD patients were not presented with chronic peritoneal dialysis, home hemodialysis, or renal transplantation as options (66%, 88%, and 74%, respectively). Using multivariate analyses, variables significantly associated with selection of chronic peritoneal dialysis as dialysis modality were the probability of chronic peritoneal dialysis being presented as a treatment option and the time spent on patient education. CONCLUSION: An incomplete presentation of treatment options is an important reason for under-utilization of home dialysis therapies and probably delays access to transplantation. Improvements in and reimbursement for pre-ESRD education could provide an equal and timely access for all medically suitable patients to various RRTs. Many patients falsely enter into the dialysis unit believing that conventional in-center dialysis will restore and extend their lives significantly. In my opinion, the American nephrologist fails miserably in the standards of informed consent that I practiced and observed in all aspects of my medical career. Similar studies subsequent to Mehotra's study reveals no improvement in this situation. Sadly, one of the rare randomized and controlled dialysis trials is essentially ignored today despite a significant finding of increased self care dialysis choices for those with improved informed consent: The impact of education on chronic kidney disease pateints' plans to initiate dialysis with self-care dialysis: a randomized trial

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Methods Seventy patients with CKD who were receiving care in a multidisciplinary predialysis clinic were randomized to receive either (1) a two-phase patient-centered educational intervention (phase 1 included educational booklets and a 15-minute video on self-care dialysis; phase 2 included a 90-minute small group interactive educational session on self-care dialysis) in addition to their regular multidisciplinary care, or (2) ongoing standard care and education in the multidisciplinary predialysis clinic. The primary outcome was patients' intention to initiate dialysis with self-care dialysis, assessed by questionnaire. Results Thirty-five patients were randomized to standard care; 34 completed the study. Thirty-five patients were randomized to the educational intervention; 30 completed phase 1 and 28 completed phase 2. By study end, significantly more patients in the intervention group (82.1%) intended to start dialysis with self-care dialysis compared with the standard care group (50%, P = 0.015). This difference persisted after controlling for the small baseline differences among patients in the two study groups (P = 0.004). Conclusion A two-phase educational intervention can increase the proportion of patients who intend to initiate dialysis with self-care dialysis. Despite the positive findings of a randomized and controlled trial increasing patients choice of self care dialysis and the dismal record the American nephrologist has accomplished in the area of informed consent, the intractable attitudes among nephrologists has not budged. I have wondered for several years now how this dichotomy between American nephrology and the other specialties is so diverse and uniformly ignored by this specialty. I have been puzzled even more so is the complete lack of accountability for ignoring such a fundamental fiduciary physician responsibility with few if any consequences for this failure. After all, informed consent is required by law for dialysis patients…” Table 9

There were twenty-eight (28) blog posts on www.ihatedialysis.com for the month of February 2012. 8 posts were not applicable and did not reveal evidence of code alignment. The blogs consisted of historical accounts of patient experiences with transplantation.

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Table 10

The data in Table 9 was extracted from (5) blog posting which appear in www.kamaldshah.com.

Table 11

Although only (1) blog posting appears on the www.kidneypatientnews.org website for the month of February 2012, the posting is probably the most important offering on ESRD from a patient’s perspective. Yusuf Amin provides a PDF document that can be downloaded by readers and covers the experience of ESRD, dialysis, treatment, etc. in an article titled: Learning to Live With Kidney Failure: A Patient's Perspective.

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Table 12

There were no blog postings on www.kidneytransplanblog.com for the month of February 2012.

Table 13

The www.lindagromkokidneycare.blogspot.com website has (1) one posting during the month of February 2012. There was one mention of diet; a new keyword added to this month’s report.

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Table 14

The livingwithpkd.blogspot.com has (1) one post during the month of February 2012. This blogger was posting a cry for help in so many words. She has described a dramatic and downward spiral into severe depression. I wish someone could help.

Table 15

Postings on the www.nytimes.com website focused mainly on the experience of beneficiaries and transplant issues.

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Table 16

There are 90,000 people in the United States waiting for a kidney and all it takes is one stranger to begin a chain of events that has the potential to save an ever-growing number of lives. Table 17

'I want to dialysis at Home – but my unit is not keen saying that although I am a suitable patient they do not have the Nurses or the resource for such an experiment – neither could they afford it. I am very disappointed, particularly as I would have thought dialysing at home was cheaper for the trust. I certainly think that it would be better for me. I do not wish to name my Trust as I don’t want to rock any boats – but the decision has made me very sad.'

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Table 18

There no blog posts on paddlingondialysisforkidneyhealth.blogspot.com for the month of February 2012.

Table 19

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Environmental Scan through Online Video

Table 1

Kenneth Weal - BLOG 14: 'Systemic Lupus Erythematosus with "Kidney Disease" Nephritic Syndrome' 3 minute 51 second video

Environmental Scan through Academic/Medical Journals Analysis

A search was conducted for academic articles published in February 2012 using the keywords: ESRD, Beneficiary, Quality of Life, and Anemia Management. There were no articles listed from this search.

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Findings Approach The environmental scan presented here is based on a review of the identified dialysis patient blogs as well as a review of literature gathered through the application of keyword search for the period of February 1 – 29, 20112 As reported in an earlier project status meeting, the selected keywords were grouped according to the areas of interest identified for this special project. Data extracted from the blogs are summarized for each blog individually with a table showing keyword tracking and followed by a general summary statement for that individual group of blog entries with specific illustrations to highlight findings. Highlights The following table (Figure 1) summarizes the keyword tracking table and indicates the top areas of interest as: Satisfaction, Dialysis Experience, Knowledge of ESRD, and Modality. Compared to the previous reports (November 2011 – January 2012), several keywords show substantial increases in these whereas new keywords were identified (e.g., diet and cycler). Another highlight in this report is the discovery of a video blog. Although keywords did not surface from the video blog, it is interesting to note that beneficiaries are using this mode of messaging and delivery.

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Figure 1

A summary of findings reported for the month of February 2012 revealed substantial increases in keyword instance in modality and knowledge of ESRD. Satisfaction and dialysis experience rate high in the blog scans as well. It should be noted that (2) two new

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keywords were added due their appearance at the beginning of the environmental scan for this month. These keywords are: diet and cycler.

Conclusion

Environmental scans from November 2011 through February 2012 reveal interest trends in blog postings. Evidence within each keyword category is leaning toward a few select keywords extracted from the blogs. Although written by patients, the advocate perspective of these blogs would appear to be more directed at industry and regulatory entities rather than other patients. The reviewer recommends special reading of the blogs posted on www.hemodoc.com for this months’ report. The keyword data is spread across each of the tables. Again, the concern is that a limited number of entries produced evidence of keywords currently in use.

References Rains, S.A. & Keating, D.M. (2011). The social dimension of blogging about health: Health blogging, social support, and well-being. Communication Monographs, 78 (4), 511�534.

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Appendix A Environmental Scan through Blog Posts http://Big D and Me.wordpress.com/ Healthy dialysis techniques for people whose kidneys have let them down Monthly Archives: February 2012 HDF – A new and better dialysis? Posted on February 17, 2012 | 2 Comments There is a change blowing through the dialysis world. Until recently, we BigD club members have belonged to either the haemodialysis branch, or the peritoneal dialysis branch. But for some time now, there has been a third branch, HaemoDiaFiltration, or HDF and it may just be the leap in technology we have been waiting for. HDF is a souped-up version of haemodialysis. It has been around in Europe for many years, but until recently, it has been fiddly to set up and expensive. But things are changing and most new machines will do either haemodialysis of HDF. What’s the difference? First a little theory. We kidney-challenged individuals experience a constant build up of toxins as a part of everyday life (eating, drinking, exercising, etc,). These would normally be extracted and excreted by our kidneys, but because they have left the building, we use dialysis machines to do much of this job for us. The toxins come in two broad sizes: large molecule and small molecule. A haemodialysis machine works by using pressure to filter water from our blood through a membrane (the “artificial kidney” on the front of each machine). Once through the membrane, the water mixes with dialysate fluid on the other side. At the same time, many of the small toxin molecules in the blood diffuse through the membrane into the dialysate liquid. The dialysate is then discarded (and those little toxins with it). Unfortunately, the large toxin molecules are too big to go through the membrane. So they hang around, eventually doing damage. One of the most famous is beta-2-microglobulin which builds up in the blood, forming a few very large molecules. This is relatively common in older BigD members, who have been on dialysis for more than 5 years. The result is pain, stiffness, and fluid in the joints (like my knee!). About 50 percent also develop carpal tunnel syndrome. No news there. So what of HDF? A HDF machine works in two ways. First, like a haemodialysis machine, it removes small toxin molecules. Second, it uses a more porous membrane to filter the blood, and a higher water flow on the other side of the membrane. This has two effects: the membrane filters larger toxin molecules from the blood and the faster water flow draws more of the water from the blood, removing even more toxins. It is a complex process because it removes a lot more water from the blood than is required to reach dry weight. To offset this, the machine calculates and adds the required amount of replacement fluid into the arterial line before it reaches the membrane. The new HDF – dialysis machines do this automatically. The benefits of HDF are not immediate, and some medicos are sceptical, but if I have the choice between storing up large toxin molecules on haemodialysis or dumping them on HDF, I choose HDF. Unfortunately, no treatment can get rid of the large molecules already embedded on my bones, joints and tissue. But it will slow or stop more being added. And people starting HDF BigD today, they may never have the problem. HDF went out of fashion for the last decade or so because of the complexity and cost. Technology improvements mean it is now on the rise many countries through Europe and in Australia (though not in the US where being more expensive that dialysis, it is virtually unavailable).

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While it is more expensive, some dialysis organisations and units are beginning to offer it because it has the potential to dramatically improve the quality of life for BigD-ers. My Diaverum unit is now offering it to everyone who meets what are fairly simple criteria: patients should be relatively young and be facing the prospect of long-term dialysis (ie, not getting a transplant within a year or two). Most of us meet these criteria. Currently they have only two HDF machines, so we will be sharing, but all replacements machines will be HDF capable. So in a year or two, everyone will be able to have HDF on every run. I have had all of one run on HDF, and all is well so far. One big benefit is that HDF is much gentler on the heart, I had less of the last-hour nerves and didn’t feel quite so hyped up when I come off – I slept well only an hour after I finished. Some others in the unit have been on it for weeks and say they feel much improved, lower blood pressure, no jiggly legs and generally feeling healthier. Whether this is real or imaginary, based on what they expect to happen, who knows? I don’t know if this is a leap in technology, or a small step forward, but I look forward to finding out. Posted in Uncategorized Dialysis: how often and for how long? Posted on February 5, 2012 | 1 Comment I’m still working on the BigD holiday arrangements. It’s slow, but looking good. More soon. In the interim, some news about dialysis times. When I started the BigD in 1995, the standard was to dialyse three times a week for 5 hours per time. I had known that dialysis was on the cards for me since 1972, when I damaged my left kidney in rough seas in the navy, and then discovered that I had only one (the right was missing in action since birth). I hung on to my dwindling kidney function (via diet and good management by my nephrologist, John Dawborn) for 23 more years. But I thought my life was over when I began treatment. Five hours per time, three times per week was a real pain. All that lost opportunity to do other things, getting restless and feeling unwell after the fourth hour and losing the rest of the day while I recovered. Like everyone, I desperately wanted to reduce my hours. My nephrologist held firm. He was a great believer in the more dialysis I had, the healthier I would be, and 15 hours per week was his absolute minimum. I regret to report that a new paper published in Medscape Nephrology on 27 December 2011, backs him up with evidence. Written by Joel D. Glickman, MD, with the electrifying title Nephrologists Unite: Time to Put the ‘t’ back in Kt/V, it has some really interesting news for us BigD-ers. What is Kt/V? It’s a ratio indicating the efficiency of each dialysis session. Put simply, it uses the speed your blood is pumped through the dialyser, and the length of time it is flowing, versus the amount of blood in your body (calculated by your weight) to estimate when you had have enough dialysis to remove the excess urea. Completely clean blood throughout your body would be a Kt/V of 1.0, where the amount of blood cleaned equals the amount of blood in your body. If you want to know more, see Wikipedia here. But there are a couple of things wrong with using the Kt/V ratio to set dialysis time. Firstly, kidney failure results in a lot of other toxins besides urea (including the so-called middle molecules). Most can be removed, but efficiency of removal cannot be measured by Kt/V. Secondly, for a range of reasons the theoretical 1.0 ratio cannot be achieved. However many kidney organisations and specialists use Kt/V as an indicator dialysis efficiency. For example, the US National Kidney Foundation Kt/V target is 1.3. Unfortunately, over time the idea of this ratio has been reversed to: “If you achieve a Kt/V of 1.3 over three hours, three times per week then you only need 3 three-hour sessions per week.” Obviously BigD patients grabbed this news with both hands, because it meant shorter times on the machine.

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But some nephrologists (like mine and JD Glickman) were sceptical. Observational data clearly indicated there were benefits in longer treatment times. Could this be proven? Along comes the Glickman paper, with some alarming research stats. Read the paper for details, but in summary, patients whose dialysis sessions were less than 3 hrs had a 60% increase in mortality. And life expectancy improves dramatically as the length of BigD time increases. Pretty hard to argue with that: shortening your dialysis time shortens your life. Or to take the positive view, more time on dialysis, more time on planet earth. Glickman’s absolute minimum is 4 hrs, three times per week, a total of 12 hours – and longer if you can arrange it. These findings make John Dawborn look pretty smart. I have been on 15 hrs per week since I started. And as I said, I really didn’t like it. But then, a couple of years later he offered an alternative, which actually meant that we could both be happy. I moved onto 5 days per week dialysis, with only 3 hours each time. I have written elsewhere about the benefits of more frequent dialysis (which is also backed up by a steadily growing body of research). I still dialyse for 15 hours per week. But I can tolerate it, and I am well most of the time. I still have things I would rather do, but with some planning, I can often do them while I am dialysing. So, the bad news is that your BigD session isn’t going to get shorter any time soon. The good news is (1) that you will live longer (for some people it will just feel longer), and (2) there is a way around those long hours and the roller coaster of three times a week. Maybe it’s time you revisited how long and how often you dialyse?

www.davita.com/forum/showthread.php?t=11974 Ethnic Kidney-Friendly Recipes.

A colleague of mine has had diabetes for years but has recently started using insulin. She is a Pakistani lady and, culturally, her diet consists of a lot of lamb, spices and rice. Most of the recipes on this website (and others) are not palatable to her or her family. Does anybody have any culturally compatible recipes to share? Originally Posted by Gram Hi, I have been on pd for 1 year this month. No one told me I couldn't work so I have been working full time. My catheter was put in but it didn't work so I had to have a second surgery. I was off for two months because of this but then I was tired of staying home so I went back to work and took off a few hours each day for about 1 week to get my training. They want you to learn how to do manuals for about 1-2 months before you get the cycler. I discussed this with my work and they were able to provide a room where I could close the door and not be disturbed. I did wash up in the bathroom, put on my mask and used paper towels to handle the doors when I went to the my private room. I work for an insurance company so an empty office was available. Now I am on the night time cycler and I am fine at work all day. I did do manual when I was on vacation and was able to do that in my car. So far everything is working fine for me and I only have to do the night time cycler. No additional during the day. They do not recommend using bathrooms because of too many germs. I think I only had 1 sick day last year and that had nothing to do with my dialysis. Follow your training and don't take shortcuts and you should be fine. Originally Posted by davpro Hey... ditto the first few weeks... hated the no shower part but that goes by pretty quick. If PD works for you then its the closest thing to freedom that you're likely to find while on a dialysis regimen. For me there is never any pain or discomfort just a slight tugging sensation that tells me my drain is complete. I do CAPD and do it almost anywhere including the car while traveling. Once I had to hemo for two months while an unrelated surgery healed... I was so relieved when the told me I could go back on PD. Right now my biggest fear is that PD will stop working... I'll deal with it if I have to but I hope I never have to.

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Originally Posted by jeffmoore tribman, are you having power outage because of a problem where in your neighborhood, or is this happening only in your home, because i have had several times during my 10 years of PD, where the power was out, especially during those two years of blackouts in California, but i don't start over with the cycler, i just result to doing manuals, and then resume the next night. I truly don't know about any battery backup, but it is good to know, it was never told to me, by my PD nurse nor my neph. Go Figure! Where do you reside? Glo

Can you use the same bags from the cycler for manual, or do you need to have different bags on hand that are used only for manual? Also, do you do them

every 4 hours during the night or wait until daytime and do them then? Thanks, Bev Moving to new location on PD

My husband will soon (hopefully) be on manual PD. We're a bit worried on the logistics of moving our belongings and ourselves to another province . We ourselves will be travelling by car. Anyone done this before? Hopefully it will be possible to do clean enough exchanges in the car on the way. About a 10 hour drive. Not sure how to warm up the fluid enroute either... Me myself have never done an exchange in a car.... but Ive been told by some1 who has and they lay the bag on the dash board and warm it with the heater... I dunno ESRD since 2004 started HEMO In 2004 recently switched to PD in December 2011 OPEN HEART SURGERY 2005 and 2010 I have 2 mechanical valves GALL BLADDER SURGERY 2010 I have been on the transplant list since August 07, 2009 lyreesha View Public Profile Send a private message to lyreesha Find More Posts by lyreesha 02-17-2012, 07:29 PM #3 bevnel1 Junior Member

Join Date: Jan 2012 Posts: 25 Re: Moving to new location on PD Quote: Originally Posted by lyreesha Me myself have never done an exchange in a car.... but Ive been told by some1 who has and they lay the bag on the dash board and warm it with the heater... I dunno Thanks for the tip on warming the bag - it just might work. All the best... Wife on cycler, drain pain

If she is using the Baxter machine her nurse can program it differently to help with some of the drain pain. It won't conpletely drain with each exchange, just

the final one. I wake up with drain pain on the last drain only, and it's very easy to bypass and then I'm able to unhook. It is called tidal.

I also have intense initial drain pain at times. I don't carry fluid during the day, so as soon as I can see the numbers reading that it's draining, I use scissor

clamps to slow down the flow. It keeps the pain away 90% of the time.

slicato View Public Profile Send a private message to slicato Find More Posts by slicato 02-16-2012, 06:48 AM #3 marianna Junior Member Join Date: Dec 2009 Location: Weatherford Texas Posts: 14 Re: Wife on cycler, drain pain Quote: Originally Posted by Toonker My wife has been on the cycler for about 3 weeks now, and the problem is, some nights it goes pretty smooth, hardly any

drain pain, but lately, in like the past 4-5 days, she is up most of the night when the cycler drains her. I will awaken cause I can hear her up, and sometimes the pain will bring her to tears. (sometimes she is crying and it is very hard to deal with) I am going to contact her nurse today, but does anybody have any

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solutions on what may help to lessen or allievate this pain? She is about ready to give up on the cycler and go back to manual exchanges. I have convinced her to wait until I contact her nurse today, and she has agreed to try whatever we can to help with the drain pain. I dont want her to give up at this point, as her therapy is only 7 hours at night. We are really close to finalizing the insurance issues, and she only has a few tests left to get her on the transplant list so we can start testing for donation. We have 3 people at this point who are willing to test, so I want her to stay on the cycler to give her more freedom until we get to that point. Anyhow, any suggestions are greatly appreciated. I remember this all too well. I experienced this drain pain when I first started on P.D. I would have very similar drain pain (each time I drained during the night.) and it would wake me up just as you described-in tears. It is a very sharp, very intense pain down in the lower abdominal area. After dealing with this for several nights, and working with my nurses and Doctor, they finally figured out that making some adjustments to my drains where it would not drain me completely each time, made the difference. I believe they call this Tidal. I could see how this experience would make someone want to give up. I mean, who in their right mind would want to have to deal with that every night? Thankfully, this did the trick. Wish they would have found out sooner, because it could have saved me some agony. I know it is not easy for you to see her go through that, and I know it is disruptive to your sleep as well. I am here anytime you need some encouragement or have any questions. Hang in there & God Bless. -Mari PD frustrations This sight is really a blessing. My husband and I are new to kidney failure. He was diagnosed with stage 5 kidney disease after going to the emergency room with chest pains and shortness of breath. He was given a fistula and given a dialysis schedule. It's been three months and he has lost fifty pounds(from180) tired all the time and when he leaves the center he doesn't start to feel good until it's time to go back. Thanks to this forum we were introduced to home pd and on Monday he's going for his catheter. Prayerfully this will be the answer to all his discomforts.He also has diabetes-controlled and uncontrolled high blood pressure. Proper diet is also a problem. Any comments please???

pdfirst View Public Profile Send a private message to pdfirst Find More Posts by pdfirst

02-14-2012, 01:20 PM #26 Director29 Junior Member

Join Date: Dec 2009 Posts: 9 Re: PD frustrations Just got the news that I will start PD training as soon as I get an appointment with the surgeon. Will get catheder, training and then off to PD land. I hope I can still referee soccer. it's a lot of running, but I love it. Any thoughts? To begin PD in two weeks Thanks PATC63 we were so relieved reading what you had to say. My husband is stage 5 also and diabetic with uncontrolled high blood pressure. Getting used to yhe diet is worse than accepting the kidney falure. Any suggestions? ? pdfirst View Public Profile Send a private message to pdfirst Find More Posts by pdfirst

02-05-2012, 06:57 AM #14 M3Riddler Senior Member Join Date: Aug 2009 Posts: 312 Re: To begin PD in two weeks Quote: Originally Posted by pdfirst Thanks PATC63 we were so relieved reading what you had to say. My husband is stage 5 also and diabetic with uncontrolled high blood pressure. Getting used to yhe diet is worse than accepting the kidney falure. Any suggestions? ?

I suggest home hemo with NxStage... Off of all 4 blood pressure Meds within first week and have normal blood pressure and have a liberal diet. No fluid

overload since you dialyze often. normal labs.....including phosphorus and potassium.

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PD - 13 Years 3 Transplants In-Center Hemo - 6 Months NxStage - Since April - 06 M3Riddler View Public Profile Send a private message to M3Riddler Find More Posts by M3Riddler 02-07-2012, 12:17 PM #15 dmaguire2009 Junior

Member Join Date: Jul 2009 Posts: 15 Re: To begin PD in two weeks thanks for the info, I too am getting ready to start

CAPD but hope to get on the cycler so I can do my treatment while sleeping. You have help bunches. "When you arise in the morning, think of what a precious privilege it is to be alive --to breathe, to think, to enjoy, to love." first night on cycler... i have had my week of training and now im about to start using my cycler. its a little nerve wrecking...hope everything goes well! wish me luck! cassidy1517 View Public Profile Send a private message to cassidy1517 Find More Posts by cassidy1517 02-13-2012, 09:46 PM #2 lyreesha Member

Join Date: Jan 2012 Location: ohio Posts: 62 Re: first night on cycler... Quote: Originally Posted by cassidy1517 i have had my week of training and now im about to start using my cycler. its a little nerve wrecking...hope everything goes well! wish me luck! Ive been on my cycler for almost a month now, its not to bad.... I wish you luck ESRD since 2004 started HEMO In 2004 recently switched to PD in December 2011 OPEN HEART SURGERY 2005 and 2010 I have 2 mechanical valves GALL BLADDER SURGERY 2010 I have been on the transplant list since August 07, 2009 Re: Finally! hiiiiiiiiii, hello to alll kidney is very important part of the body, my friend all suffering from the kidney problem and she do dialysis many time its very bed to feel that laying on bed and dialysis process is runinig malishajohnjerri View Public Profile Send a private message to malishajohnjerri Find More Posts by malishajohnjerri 02-11-2012, 07:05 AM #26 alice54 Member

Join Date: Feb 2012 Location: TN Posts: 32 Re: Finally! Hi Pat..I am new here with CKD stage 3...33% function. As I read the posts I find inspiration that what ever comes I think I can do it. I am not sure what Liberty cycler is but I am thankful for you that it is giving you a better life...more time to be you. Keep up the good work..perhaps your cats know your hurting and they just wish to be part of your therapy. My best..alice PS ..whenever I vacuum I get pain right below my right rib cage and this am with movement I have pain in the lower side of my back..is this something I should expect and will it become worse...thanks PD and weight loss

Has anyone had success losing weight, while on PD? My husband is working with the transplant center at Johns Hopkins, but he has about 50 lbs to lose before

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they will go forward. He has been trying for almost a year, at this point. He had lost over 200 lbs., but since starting PD his weight has increased greatly. We've

been to two different transplant centers and both have said that they do not believe he can lose weight while on PD. He would rather not switch to Hemo, but

if he can't lose the weight, he might not have a choice.

I'm looking for any experience/thoughts/etc. you might have on this. Thanks! elizabeth View Public Profile Send a private message to elizabeth Find More Posts by elizabeth 02-10-2012, 05:40 PM #2 M3Riddler Senior Member

Join Date: Aug 2009 Posts: 312 Re: PD and weight loss

If he is not cheating on his diet, there is a possibility that it may be the PD solutions as they contain sugar and some people tend to gain weight because of this. He may way to speak with his nephrologists about this. PD - 13 Years 3 Transplants In-Center Hemo - 6 Months NxStage - Since April - 06 Re: "Eating Out" I have stuggled for year with eating out and staying on the terrible diet. I find most restaurant offer potatoes a million ways, but they will also offer rice or veggies. I get boring always eating rice as a side,but it is an accectable choice found at most steak houses, tex-mex restaurants,

and chilis type places. Since ive been on dialysis (going on 5 years) I find tex-mex the best choice for me. I get fajitas because they are filling and i control

exactly what goes in them.

I hav noticed my hand is swollen any thoughts on way to un swell it ! My fistula is on the same arm . It is working well . ,nurse stated I mite have to get an

operation . Not a good thought !

Peter L Bello View Public Profile Send a private message to Peter L Bello Find More Posts by Peter L Bello

02-26-2012, 08:36 AM #2 granny Senior Member

Join Date: Jul 2007 Location: Shropshire UK Posts: 145

Re: Swollen hand may just be fluid retantion. But would get it checked out so it does not affect use of the fistula. Audrey Kidney problems starrted 1980's when I had Saracoidosis Recenty started HD at my local renal u Init in Telford.Still having a few problems with my 2nd line.

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New to CKD and new here. Hello! Two months ago I thought I had an ulcer and last week it turned out to be CKD stage 4. I've been through a ton of medical tests, next Monday I'm hoping to find out what is causing my kidneys to fail. My GFR was normal in February 2011 and went to 28 in December. I'm trying to learn as much as possible about CKD. I look forward to reading through your past experiences and getting to know everyone.

BlueRidgeGal View Public Profile Send a private message to BlueRidgeGal Find More Posts by BlueRidgeGal

02-20-2012, 08:22 PM #2 Marina BlueRidgeGal, I'm sorry to hear of the rapid GFR drop. I hope your Drs can figure out what's causing the GFR drop and help you maintain what you do still have. Take care!!

"Anything is possible if you BELIEVE" (Joel Osteen) "If God brought you to it, He will bring you through it" "After every storm, there is a rainbow!" " What

doesn't kill us, only makes us stronger"

Nov 1979 Diabetes Apr. 2004- Nov 2010 CAPD Nov 9, 2010 I was Blessed with with a kidney and pancreas TX God Bless my donor and her wonderful family for giving me THE GIFT OF LIFE !!! Marina View Public Profile Send a private message to Marina Find More Posts by Marina Thank you for your response Marina. I know I have a lot to learn about CKD. I'm happy to have found this forum. BlueRidgeGal View Public Profile Send a private message to BlueRidgeGal Find More Posts by BlueRidgeGal 02-22-2012, 05:53 AM #4 maryann Junior Member

Join Date: Jun 2009 Location: long island Posts: 15 Re: New to CKD and new here. My husband is the patient. He is in stage 5. Does anyone know if a spike in blood pressure 148/75 and a spike in glucose can affect the creatinine and bun readings? They have also gone up. My doctor is not the most helpful. Thank you. perfect seasoning

Is anyone familiar with papa's perfect seasoning? My father has been in the hospital and this is the seasoning that was given to him. He really likes it a lot. I

would like to know the potassium content if any that it has. I can't seem to find out any info on this. If anyone knows , please contact me. thanks, Diane

dmmoody View Public Profile Send a private message to dmmoody Find More Posts by dmmoody [QUOTE=dmmoody;49557]Is anyone familiar with papa's perfect seasoning? My father has been in the hospital and this is the seasoning that was given to him. He really likes it a lot. I would like to know the potassium content if any that it has. I can't seem to find out any info on this. If anyone knows , please contact me. thanks, Diane[/QUOTE I was recently in the hospital and started my dialysis for the first time and I also was given the papa's perfect seasoning. I have been trying to find out as well. The seasoning taste great. I am still doing some research on it, when I find out I will post the results.

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mebs View Public Profile Send a private message to mebs Find More Posts by mebs 02-13-2012, 09:02 AM #3 JoanFRKPA Junior Member The phone number for more info on Papas Perfect Seasoning is 1-800-367-4421 begin_of_the_skype_highlighting 1-800-367-4421

end_of_the_skype_highlighting. JoanFRKPA View Public Profile Send a private message to JoanFRKPA Find More Posts by JoanFRKPA -------------------------------------------------------------------------------

http://www.mrsdash.com/?s_cid=c3a:go...alt+free+spice I think mrsdash has Papa Dash. I use their salt free products and they work really well. The nutrotion facts are on the bottle. I especially like the Southwest Chipotle. Good luck..Ann alice54 View Public Profile Send a private message to alice54 Find More Posts by alice54 Try Ms Dash I think they have Pappa Dash. I use the seasonings and really like them. The nutrients are on the bottle. Good luck..make sure you take care of your self as you take care of your father. My best..alice If you google it, you'll find all kinds of info. "Anything is possible if you BELIEVE" (Joel Osteen) "If God brought you to it, He will bring you through it" "After every storm, there is a rainbow!" " What doesn't kill us, only makes us stronger" Nov 1979 Diabetes Apr. 2004- Nov 2010 CAPD Nov 9, 2010 I was Blessed with with a kidney and pancreas TX God Bless my donor and her wonderful family for giving me THE GIFT OF LIFE !!! New for forum and need to vent HI, I am new to the forum. My husband of almost 25 years has 3rd stage kidney disease, at his last test in Nov/11 his GFR was 24%. He does not sleep well during the night, mostly waking up. He has congestive heart failure, diabetes, heart attack, stroke, triple bypass, pacemaker/defibulator, and gout. Most nights are spent sleeping in a recliner or arm chair. During the day he does lots of moaning because he is not feeling well (he says he feels like he is going to be sick). He sleeps all the time. The nurses at the renal clinic tell me he will have good days and bad days. It is so hard just having to sit back and watch. We live in Manitoba, Canada, do I am not sure which programs are available. He has changed his diet for the renal program. When the time comes, we will be doing peritonal dialysis at home. How do you just sit back and watch, this is the worst. I have no control and cannot help in any way. Any suggestions would be greatly appreciated. I do my best to not show my bad days. My story so far

My husband is nearly 83 and in poor health in ways besides his ESRD. He's been on peritoneal dialysis over 2 years.He's beat a lot of odds so far.

But I admit that the toll on my has been great. Here are the ways I have found to cope with the stress, loneliness, depression, overwhelming sense of

responsibility, bitterness, etc.

After reading Dr Daniel Amen's books and Suzy Cohen (The 24-Hr Pharmacist), I chose to not take an antidepressant but instead I take 400-500 mg of 5-HTP

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every morning. It calms my temper, raises my spirits, and helps me see the good things in the day. It is a serotonin booster and for me it has no side effects. I

get it at Costco.

I try my very best to do research about recipes that will fit his specific dietary needs based on his latest lab results. Sodium this month? More liquid

needed?

I take advantage of every opportunity to get help. When he is in the hospital, I make friends with all of the staff. In return, when we return to the hospital,

they know us and our problems and they all go out of their way to help us in big and small ways.

I give my husband tools to help him help himself. When he can't remember to warm the next bag of dialysis solution, I gave him my favorite kitchen timer that

hangs around your neck. We moved the garbage can near the back door so he doesn't have to walk far to dispose of the empty bags. I give the empty solution

boxes away on freecycle so we don't have to stuff them in the recycle bin....people fight over these wonderful boxes!

I let my friends and neighbors know how he is doing. When we need assistance, they are there. When we don't have the time or energy to entertain them,

they understand. when I have an urgent problem around the house, they come running. In return I try to repay them with homemade biscotti and wine,

and take them out to dinner.

I am not shy about telling total strangers about our situation. Today I met a lady at Costco and spent nearly an hour talking with her about her husband's

situation. She will probably be part of my support system! I take friends wherever I can find them.

When I feel able to leave my husband alone, I volunteer. When I feel I can't leave the house without worrying, I quilt. I got a pendant for our home alarm system so if he has an emergency when I am gone, he can summon the ambulance. Keeping dog My husband and his little dog are a team. Is it okay for the dog to sleep with him on PD, but not of course in the room when he connects or disconnects to the machine? Same with doing an exchange in the van - maybe if the dog is in a kennel in the back of the van while exchanging? bevnel1 View Public Profile Send a private message to bevnel1 Find More Posts by bevnel1 02-28-2012, 02:59 PM #2 BryanW Junior Member

Join Date: Feb 2012 Posts: 3 Re: Keeping dog Im about to start PD next month and I have 2 dogs and a cat. The two dogs sleeps with us at night. That was my first question and the nurse told me that it is fine as long as the dog are not in the room when i hook myself up. They can sleep with us( just not right on top of me) and everything will be fine. Not sure about the van though. Hope this helps. Using bathroom When my husband eventually uses the cycler, is it possible with the extension to use the bathroom without unhooking in the night?

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bevnel1 View Public Profile Send a private message to bevnel1 Find More Posts by bevnel1 02-18-2012, 07:06 AM #2 lcavender Member

Join Date: Jan 2010 Location: Southwest Ohio Posts: 64 Re: Using bathroom Yes, I do it all the time. Just make sure he doesn't close the door on the tubing. Diagnosed with PKD in 1992 On transplant list since Dec. 2009 Peritoneal dialysis since March 2010 Last edited by lcavender; 02-18-2012 at 08:29 PM. Reason: typo lcavender View Public Profile Send a private message to lcavender Find More Posts by lcavender 02-18-2012, 06:32 PM #3 lyreesha Member

Join Date: Jan 2012 Location: ohio Posts: 62 Re: Using bathroom you have to make sure you can reach the bathroom cause you can not unhook during treatment unless its an emergency only... not every time you have to use the bathroom... you must stay connected your full treatment!!! ESRD since 2004 started HEMO In 2004 recently switched to PD in December 2011 OPEN HEART SURGERY 2005 and 2010 I have 2 mechanical valves GALL BLADDER SURGERY 2010 I have been on the transplant list since August 07, 2009 lyreesha View Public Profile Send a private message to lyreesha Find More Posts by lyreesha 02-22-2012, 08:09 PM #4

bridgetotransplant Junior Member

Join Date: Feb 2012 Posts: 2 Re: Using bathroom I've been going crazy for about 3 weeks,wondering how I would go potty. DUHHHHHH a long tube. Alicia FSGS Diagnosed 1997 Fistula Surgery March 7, 2012 On Transplant list since Sept 2011 Current GFR 11 Quote: Originally Posted by lcavender Yes, I do it all the time. Just make sure he doesn't close the door on the tubing.

www.chron.com/news/article/Ohio-patients-celebrate-saving-power-of-dialysis-3341306.php By Rita Price The Columbus Dispatch Thursday February 9, 2012 7:34 AM Comments: 3 Share This Looked at one way, the numbers behind the celebration might seem grim: Two patients, six failed transplants and a combined 63 years of treatment and dialysis. Jerry Mitchell and Julie Boatwright are the faces — the usually smiling faces — behind that improbable math. “You talk to anybody, and they think dialysis is the end of the road,” Mitchell said. “I feel good, and they took my kidneys out in 1975.” He and Boatwright were honored yesterday by staff members at Fresenius Medical Care-Mount Carmel West for being “quarter-century patients,” which is a festive way of saying that they’ve had successful, decades-long relationships with the blood-scrubbing machines that keep them alive. Mitchell, 58, has been a patient for 36 years; Boatwright is 43 and first underwent dialysis 27 years ago.

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“It’s very unusual,” said Dr. Raj Venkataraman, medical director at the center. “But the idea is, you can. You can live many, many years on dialysis and lead a productive life.” Mitchell said he’s happy to serve as an example for that message, especially when many people with kidney disease don’t receive transplants. According to U.S. Renal Data System information provided by Fresenius, about 382,000 Americans rely on some form of dialysis for their survival. More than 72,000 are on waiting lists for kidney transplants, but only about 18,000 will receive a new organ each year. “Some of them are so down in the dumps,” Mitchell said of dialysis patients. “I walk in and say, ‘Hey, I’ve been doing this going on 37 years.’ They might talk to me, and I give them encouragement.” With 10 siblings, the Grove City man always had a supply of willing donors and good matches for transplants. Brothers gave him kidneys twice, but his disease soon returned. A third transplant failed after his body rejected the kidney. Boatwright, who lives just outside Grove City, went through three transplants, too. The anguish of those experiences behind her, she also tries to serve as a mentor for other dialysis patients. The usual regimen is treatment three days a week for about four or five hours each time. “There are, what, 168 hours in a week?” she said. “Don’t just dwell on the 15 you’ve got to spend hooked up to a machine.” Boatwright lobbied for the recent addition of Wi-Fi at the center, and she and Mitchell both offer advice about the importance of keeping to prescribed medications and diet. Dialysis patients must limit fluid intake and be careful about foods high in sodium, potassium and phosphorus. Center staff members said their two senior patients are model patients. “It’s like a job,” Mitchell said. “You gotta clock in,” Boatwright said, laughing. “And show up,” Mitchell said. “Believe it or not, there are people who call in sick.” Both underwent dialysis late yesterday afternoon as usual, but this time there were shiny balloons tethered to their chairs and renal-friendly cake and punch waiting in the reception area. Mitchell read newspapers on his iPad and kept watch over the machine. He has long studied the science and engineering behind its every beep, pump and whirl. “Never had a blue balloon before,” he said. Boatwright said staff members once gave out little prizes for patients who, because they were taking good care of themselves, had great lab reports.

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She smiled and declined the offer. “Nope,” Boatwright said. “Life is good enough.”

www.donatelifeillinois.org/ Donate Life Illinois Featured in “I Am Hope” Campaign February 24, 2012 Next week, Donate Life Illinois will be featured in the national “I Am Hope” campaign. The “I Am Hope” initiative is part of Donate Life America’s “20 Million in 2012” campaign focused on registering 20 million Americans as organ and tissue donors in 2012. Each state (plus Washington, DC and Puerto Rico) has been assigned a week of the year to feature seven local inspiring stories, one for each day of the week. “I Am Hope” Video from Donate Life America From Sunday February 26 to Saturday March 3, Donate Life America will feature stories from Illinois. We will be sharing stories of donation experiences from Illinois with Donate Life America and its Donate Life partners throughout the country. Check the Donate Life Illinois Facebook Fan Page to view our “I Am Hope” stories next week! Share this: Email Facebook5 Twitter1 Print StumbleUpon Digg Reddit Leave a Comment » | Donate Life America, Donate Life Illinois | Tagged: 20 million in 2012, campaign, donate life, Donate Life America, Donate Life Illinois, donation, donor, facebook, I am HOPE, illinois, organ donation, organ donation stories, organ donor, organ transplant, Recipient, register, registration, transplant, video | Permalink Posted by jmuller123 Show Some Love for Organ and Tissue Donation February 14, 2012 Supporters of organ and tissue donation are some of the most passionate and energetic advocates around. This Valentine’s Day, let’s focus that passion and energy on “showing some love for organ and tissue donation.” How can we show our love for donation? It’s simple . . . just follow these steps: If you haven’t done so already, take 30 seconds to register your decision to save lives through organ/tissue donation at DonateLifeIllinois.org.

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Let others know that you’re a registered donor! Tweet and post about why you support organ/tissue donation. Not a social media fan? No problem! Tell ten co-workers, friends, or family members about why you support organ/tissue donation and why they should register at DonateLifeIllinois.org. Become a Donate Life Illinois volunteer. Learn more about the Donate Life Illinois Volunteer Program at DonateLifeIllinois.org! Advocate for organ/tissue donation in the community and in your workplace. Encourage your employer to participate in the Donate Life Illinois Workplace Partners Campaign. Or, if you’re still in school, organize a Campus Campaign that will encourage your fellow students to register as organ/tissue donors! Thanks for all of your love! Let us know how you “showed your love for donation” by posting on the Donate Life Illinois Facebook Page or tweet at us @DonateLifeIL!

www.fbkidneydisease.info/kidney-disease/

My wife was diagnosed with phase iv renal cell carcinoma in oct.2003.They took her left kidney and the two adrenal glands.She has been on sutent for virtually

a yr and carrying out quite well.There are some facet affects but her tumors are shrinking, so it is certainly well worth it.

I’m a 27-year previous woman diagnosed in Mar 08 with renal cell carcinoma phase 2. Left kidney & adrenal gland had been eliminated. The tumor is 5.eight cm but confined to the kidney. Tumor started out to bleed and which is how it was identified. I had a chest CAT Scan last week and it was normal (Thank God). Is it feasible to find if the tumor had pass on only with a CAT Scan and this quickly immediately after the surgical treatment? What really should I count on from now on? I will participate in a clinical trial (Sutent), is this valuable? They just preserve you all day due to the fact they want the internet site where the biopsy to heal prior to you depart. You have a much better likelihood at having inside bleeding if you are shifting all around. The treatment by itself will not consider extended at all and does not damage as well much. When I had mine carried out I wasn’t allowed to move at all for many several hours. My doc told me that it would only get all around thirty minutes but her nurse advised me that it was an all day point? I am not sure why however…? I noticed that they keep you in at the hospital for a few hours? I am just actually concerned and cant discuss to my document until Monday. It could be an allergic response to the distinction. Go to the ER and get examined out ASAP you never ever know what allergic reactions can guide to,it is greater to be in a hospital beneath observation then anyplace else. Very good Luck.

Be sure to inform me what is improper with my legs….i had an mri with contrast yesterday, am on keflex, kidneys? I had a gadolinium injection for mri with

distinction of head 24 several hours back. I had no signs when I had it. Correct now and all day my legs from the knee down damage. My ft truly feel numb on

my heels, and my legs and ft sort of tingle.

I heard gadolinium can effect kidneys with kidney condition. I’m twenty and healthful looking, not being aware of of any kidney malfunction. Could this leg

discomfort be associated with my kidneys from the distinction injection?

I am so terrified, I failed to want that silly dye products in the very first place, and I do not want to regret it both

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How do you settle for a response from a physician this sort of as “somethings goofy”? I comprehend that you are only 15 and almost certainly terrified 50 % to death, but you ought to consult your physician to be much more specific. He must be capable to inform you whats occurring or what he thinks is occurring. From this stage forward, just take some management! If the medical professional tells you one thing you will not really understand, inquire him to be a lot more certain and to spell factors out for you. Never permit him chat down to you or distract you from discovering out what he thinks may possibly be heading on. He could feel that since you are young that you wont be able to handle or realize what is happening. Knowledge is strength, once you have an concept of whats heading on you will be able to empower yourself and ready yourself to fight what ever before situation you may have! I hope that you finish up being ok and would like you the very best!

I comprehend you are tremendous scared but “kidneys do not just fail”. Your urologist could have stated that “somethings goofy” but that does

not imply you have a terminal illness or everything like that.

My advise, wait until finally the exams are carried out, you are recommended of what the issue is and go from there. In the mean time, attempt to remain

serene, interesting and gathered as your worrying needlessly will not solve any of the difficulty.

Good Luck.

i have to go to cincinnati childrens for a vcug and blader ultrasound on wednesday and for some reason cant battle the feeling that they wont locate anything at all and my kidneys will just fail anyways. Im tremendous terrified. Im 15 and my urologist told me “somethings goofy” Cut them in fifty percent and consider them that way.

You need to have to go to ER asap . You probably have kidney stones,higher protein in your kidneys,kidney infection. You want to see a nephrologist just to

make certain you have correct care.

Very best wishes.

Get the capsules and crunch them up to swallow. If that does not operate inquire your physician for a referral to see a specialist due to the fact you are

nevertheless in discomfort, let the medical professional know how long and everything about all your considerations and be persist.

Since is was 13 I started burning down there and I obtained a very clear discharge. I never ever knew what it was

simply because I couldn’t go to the physician.

Now im 16. Not only does it melt away down there, I now have a yellowish brown discharge, sweating, odor, and sharp pains in my sides. I believe the pain

is coming from my kidneys.

I went to my gyneocologists in october and she informed me that there was practically nothing wrong when she checked me but she stated i may possibly

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have a possible bladder infection and perscribed me some medicine but i cant swallow the capsules due to the fact they are so enormous.

i experience like im in danger simply because ive had these troubles for so long. must i go back again to the medical professional and see if i can get a more

compact capsule?

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Achievement. New! Mailing List! Commence Marketing This Climbing Niche And You Won’t Regret If the only symptom you have is being fatigued, Why has

your medical doctor suggested Lupus? If there is no other explanation for him suggesting lupus I would get a 2nd opinion! and a 3rd if you can. Getting

exhausted is a symptom of so numerous issues! I would refuse to have a biopsy until finally you get at the very least a single far more view and make certain its

an view of a doctor who does not know the physician your currently viewing. My Greatest Needs

If your dr has done blood exams, and located problems with your blood, and particular protiens in your urine, it might be suggestive of Lupus nerphritis. A

distinct sort of Lupus Then Systemic Lupus. Your signs and symptoms could extremely well be diverse.

I have Systemic Lupus (SLE). I havent necessary a kidney biopsy, but did have a Liver Biopsy since I have Lupoid Hepatitis (autoimmune Hepatitis, fr the

Lupus. I know this much, as with a liver Biopsy they do set you to rest, so you arent awake. The liver biopsy when I woke, was sore, but no enormous

discomfort, as well as most dr’s and surgons will give you discomfort killers for the after surgical procedure.

If your tremendous freaked, contact the physician, and request him to make clear his exact reasoning why he thinks you may have Lupus nephritis. If you will

not like the response, get a second impression. But If you do have Lupus Nephritis, you do require treatment correct absent. It is a required organ, and you can

not sit and do nothing, the for a longer time it sits, and the more ill you may become. I Co-Possess a Lupus/autoimmune assistance group, a number of have

Lupus Nephritis, and simply because they acted fast, and just take their meds, are in a position to perform, and reside thier lives.

They could modify your diet plan, and some reasonable, or moderate exersice to get started with can only make you more powerful. I swim, to help me with

the moments when I am down with severe flares (durations of average/severe condition exercise). Lupus can assortment from Delicate to Significant. He may

possibly have also carried out some pre bloodwork, for autoimmune illness that has occur again good as properly.

The modifications I made for lupus above the several years have been numerous as my life and sickness have altered. But I have a good deal of Central Nervous

Method Troubles, not all with Lupus do. So I had to stop functioning. I try to eat better, I took swimming once more a couple of a long time in the past, I

produced an on-line assistance group, I pay much more attention to my wellness, dont drink alcohol anymore or really little. I try out to appreciate the great

times, weeks or months a great deal more, and value them. I relaxation when my physique tells me to. Oh and for the 1st time in my life I really consider most

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perscriptions perscribed….there are a few, and my dr knows which ones, I just physically can not tolerate. So we identified kinds I could.

My kidney doctor stated i may lupus, but i don’t any signs, only tiredness, but i think i’m just lazy..lol…anyways, so he is likely set up an appointment to do a kidney biopsy. Does it damage to get kidney biopsy. I cannot get pain at all. I am so afraid.. And for people who have lupus, what modifications did you do for your lupus? Do you consume various or exercise a lot more? I’m just guessing that it will get about two 1/2 several hours, baring difficulties, but are unable to discover any data on the internet. The greatest point to do is inquire the surgeon’s place of work what you ought to system for. I am so sorry to hear of your mother’s predicament.

The only way ur mom would be in icu is if the surgey does not go effectively.I asked my daughter-in-regulation to inquire her sister because she is a RN.and

has been for 15 years.As significantly as how prolonged any in which from 2hrs,to 4.it genuinely is dependent on if some thing goes improper.Explain to your

mom Great LUCK on her surgey.

It all relies upon on what the docs are gonna do. I had a partial nephrectomy in Dec, 2005, the most cancers hadnt distribute to their knowledge(still checking) but

the surgical treatment took virtually six hours, they did it laproscopically, and they needed to make confident they got it all out. I never put in time in ICU, but

was in the hospital for 4 times. It was rather miserable, but I produced it. i would suppose no far more than a couple of hrs in surgical treatment if they do it open

up. I would like her the greatest of luck! Feel free of charge to e mail me at dmckinner@yahoo.com, if I can provide you the name of a excellent renal most

cancers professional, or be of support.

My son’s sugery took about 4 hrs and he was in the hospital nine times. He was in ICU for two days. Make confident they install a port for chemo while in

medical procedures.

Not like some of the others have stated. It is normal procedure, at the very least at our hospital, to be in ICU for a day or 2 following this form of surgical

treatment.

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My mother identified out two weeks ago she’s acquired kidney most cancers, it has disperse to her renal vein, liver and lungs. She has a twelve centimeter tumor on her left kidney and has to have her left kidney eliminated by open surgical procedure, How lengthy does this surgery normally take? My husband and I have agreed that I would stay and take care of her when she acquired out of the hospital. I would also like to know if its probably that she will be in icu for a day or so? if any person can aid I would appreciate it. About 15% survive five a long time after becoming identified with stage 4 illness. I have two concerns:

Very first has he undergone radiation?

Secondly, when the excision of the tumor in their lung was done in March of 2010, was there any lymph node enlargement or signs that the most

cancers had distribute to the surrounding lymph nodes in the lung?

The reason why I question is because cancer cells can pass on from 1 element of the body to an additional, or metastasize, two distinct methods, the bloodstream

and the lymphatic program. It is possible that the cells produced their way to the lungs via the bloodstream given that the kidneys receive a huge volume of our

blood provide nonetheless, given that the tumors have reappeared this prospects me to imagine that they have afflicted the lymphatic program.

If this is the circumstance radiation treatment could be one thing to think about if it hasn’t yet been regarded. The tumors inside of the lung are most

probably the identical variety of most cancers cells that originated in the kidneys even though, which implies they may not be really prone to chemo or

radiation.

It is also attainable that the cancer could unfold to the encompass bone (the backbone) and to the brain. Prognosis is not hopeful.

I want to just include I’m very sorry for you and whoever it is who is heading through this. Most cancers isunspeakablyy challenging and my sympathy and

condolences go out to you the two. My father had a mind tumor and I can only say that I comprehend how difficult it is. He’s place up an remarkable battle as a

result far and you never ever know what the human body can do.

September 2008 – fifty three y/o douleur with no obvious health problems collapses from hypertension. October 2008 – discovered huge tumor encased in left Kidney. Nephrectomy profitable three days later on. Biopsy verified Renal Mobile Carcinoma, Stage 2. Scans thoroughly clean until finally February 2010. February 2010 – Large tumor discovered in still left lung. Stop of March, 2010 – Sleeve method utilised to get rid of fifty percent of the lung. Thoroughly clean margins. Biopsy confirmed Renal Mobile Carcinoma, Stage 4. December 2010 – Extreme pneumonia. Hospitalized, and scans were carried out exhibiting no abnormalities. March 2011 – Scans show far more than 10 tumors, all more compact than a BB in proper lung. 6cm x 7cm tumor on Adrenal gland. No signs or symptoms whatsoever. Has been on Sutent because April, 2010. Now altering

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to IV Torisel on the 25th. Has any person taken this drug? Can anybody give me a prognosis on how prolonged the patient has? Kidneys failing is not a great indicator, but if document are nonetheless chatting about working, they need to be contemplating she’ll live extended sufficient to see benefits from the surgical procedure. I’m not a health care professional, but I do know that if medical professionals never feel a person has a opportunity, they’re not really going to make the affected person submit to a distressing, costly surgery that will not prolong the patient’s existence.

I would get this affected person to the biggest health care middle in the location and make confident that you have the best resources. Make physicians describe

issues to you extensively so you understand what the predicament is.

The diabetes, if uncontrolled, will significantly increase the stage of difficulties and size of recuperation for this individual.

It might be time to contemplate top quality of time versus amount… blood in urine, soreness in lower to mid back again region, common weak point or fatigue

Decreased urine output, although sometimes urine output continues to be regular Fluid retention, leading to inflammation in your legs, ankles or ft Drowsiness

Shortness of breath Fatigue Confusion Seizures or coma in significant circumstances Sometimes nausea and vomiting due to irregular electrolytes

A basic lab test can explain to you inside 4 hours.

Edema. Fingers, encounter, ankles, ft, then all more than. The edema is typically there in the a.m. Other circumstances it is even worse in pm. Reduced urination.

Complications. Backaches. Other. Fever. Nausea, diminished appetite. Hypertension . Blood in urine. Albumin in the urine. Discolored urine.

A whole lot of issues can cause kidney failure. There are numerous various varieties of kidney failure. Nephritis is a type of kidney failure, there is acute

and chronic.

Strep infections can lead to acute. Strep throat can lead to nephritis, and then to far more extreme long expression situations. That is why when you have

strep you get abts and are advised to just take all of it, and get rechecked.

Go to the physician long before these even if you only suspect you are

getting kidney dilemma.s

the initial one is spot on You really, truly want to inquire the lab what dietary constraints are required, if any. I will not don’t forget having any limits when I was just

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acquiring my kidney capabilities examined.

Whilst you’re on the phone with the lab, request them about the urine collection “hats” for women, if you happen to be feminine and have difficulties peeing into

a cup. The “hat” is a plastic thingamajiggy that is location more than the toilet bowl, and you pee into it as a substitute of the toilet. For those of us who don’t

have created in urine aiming products, they’re much easier to use.

My endocrinologist is concerned about my Co2 amount, and suggested I see a nephrologist for testing of renal function. I have been online scaring

myself senseless understanding about Chronic Kidney Illness, indications of which match a lot of of my beforehand-idiopathic wellbeing signs perfectly.

The dilemma/rationalization?

I’m anorexic, and have been off and on for ten several years. If, for instance, 1 check is employed to decide protein ranges, what does it suggest for the exam

if I haven’t eaten because November?

Here are my quantities- labs not mentioned were in ref. assortment.

CBC w/ Diff: RBC- 5.30 (3.87-5.eleven) Hemoglobin- fifteen.two (twelve.-fifteen.)

Liver Profile: Bilirubin, Somme- 1.five (.3-1.two) Indirect

Bilirubin- 1.two (.-.nine)

NOTES: Somme Cholesterol/HDL Ratio 3.2 < —– 1/2 avg risk for women Glucose- 75 (70-99)

<—-Normal BP- 81/56 <—- Low

My bilirubin levels have always been high, as have my mother’s- mine have dropped significantly since I’ve lost weight.

She ought to be noticed by a nephrologist if she has not however noticed 1. If she has higher blood pressure or diabetes these ought to be managed as they

add to kidney ailment.

3%????? I by no means noticed that. My physician place me in the hospital when I went down to 15%. She requirements to see a excellent nephrologist, and

quickly! When you are down that lower, you’re not creating new blood cells, and you might be very harmful. It sounds like she needs a transplant, or at

minimum dialysis.

my sister born with a solitary kidney.. she turned fifty this yr… this modern many years, her kidney purpose percentage is decreasing by one% every single yr… physicians said ppl can reside usually until the percentage turned 3%.. now it truly is eight% be sure to assist if anybody is aware any medication or medical professionals almost everywhere i can make contact with so that it can quit or slow it decreasing?

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Renal Dialysis is a procedure by which practitioners move your blood by a membrane that filters your blood for you, just as the kidney would. This method can consider some time, but most folks are comfy.

Dialysis is nessicary when a persons technique does not properly filter blood. This can be triggered by Renal (kidney) failure, Nephrectomy (removing of a

single kidney), or failure of the nephrons (filtering models) inside of the kidney.

The kidneys are utilised to filter all of the fluid that passes from your gut into your bladder. They serve various functions such as regulating the volume

of h2o you retain to avoid dehydration.

Their primary operate is to filter vitamins and added fluid and dispose of the poisons and other pointless components. Aspects which, above time, would

accumulate in your body and make you extremely sick.

Considering that you have one kidney, it is functioning far more difficult than standard and these test-ups are to make sure that it is functioning commonly. In

the circumstance of a kidney donor, each the individual and the donor will be monitored to make sure that each and every kidney proceeds to purpose usually.

You can envision that considering that your single kidney is operating 2 times as challenging, it actually demands to have a break every so typically to

minimize the risk of it failing completely.

This is exactly where dialysis is utilised.

Generally you are admitted as an out-patient or day affected person – you normally do not have to continue to be right away. You are hooked up to a device that

gently cycles your blood by way of a filtration method in much the identical way that your kidney filters issues.

I’m certain that you are already on a limited listing of factors that you can eat or drink.

It truly is an artificial way of taking away the toxic compounds in which a device does the function and all you have to do is rest.

Dialysis is typically utilised for individuals who are previously in renal failure but medical doctors have found out that preventative dialysis can take the strain

off a kidney and permit it to relaxation in an effort to avert renal failure.

Your best bet is to talk to your medical doctor or renal specialist and request these questions. Ask them to explain it in straightforward terms if it appears all also

medical and scientific. They must demonstrate you the machine as well so you know what to expect.

Hope this assists and good luck with your remedy!

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okay well i was born with 1 kidney and i get yearly checkups

and im suppose to get a renal dialysis but im not positive

what it is can you assist

unfortunately it is a day to day factor now=sorry

Usually when hospice comes in it is to help the man or woman and the household go threw the finish stages of life iam really sorry to listen to this is happeing to

you i know what you are really going threw

You could request the medical professional, but my guess would be a couple of months. There are some even though that live for a long time after stopping

dialysis, so it is totally dependant on the specific. The itching could be a medication aspect result, especially if he is on predinisone, which is identified to result

in pores and skin problems. If he desires to extend his lifestyle without having the dialysis, he ought to chat to a nutritionist about what sort of diet regime he

should be on to just take stress off of his coronary heart and kidneys. If he is unable to concentrate his urine, dehydration could become the most significant

problem. Make confident he gets lots of fluids.

Have you deemed donating a kidney?

I assume from your description that your father has determined to slip away at this stage. I do not feel acquiring finish phase renal failure provides your father

more than a couple of weeks in phrases of life expectancy.

I actually hope you, your family, and doctors can give him comfort and ease in the course of his remaining time. My father handed absent and I was not there, I

regret that extremely a lot, so may possibly I recommend that you devote as considerably time with your father as you can.

Greatest wishes, and God bless you all.

Hospice individuals are Godsent. They ought to be in a position to help you via this. Certainly, he produced this choice, and the most standard point in

the world is for you to problem it now.

Say certainly to every thing hospice provides you. You want and have earned their assist.

One of the items that kidneys filter is phosphorus. If it is not filtered, it leads to itchiness, which can be unbearable. Partnered with phosphorus is calcium, and

calcium deposits are most likely building in his arteries. The point that will trigger his loss of life is yet another coronary heart strike. This is simply because

potassium will build up, the muscle groups (like the heart) are vulnerable to changes in potassium amounts. Once the potassium will get to a certain point your

dad’s coronary heart will quit. The most telling indicator of large potassium is muscle weakness, even though this is misleading since it sounds like your dad has

been weak for a while.

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It truly is tough to explain to how prolonged he will dwell since I will not know the extent of the treatment he is acquiring, regardless of whether his

diabetes is being managed, how much protein he is taking in. and so forth. It sounds like he has not had dialysis considering that March, and I’m actually

stunned he is lived this prolonged. It won’t be prolonged. Other issues to view for are confusion as the urea (primary squander in urine) builds up in his

blood. If he loses the capability to make urine he will have some inflammation, largely in his ankles. As this fluid builds up it can congest the heart.

My father inlaw was on dialysis for eight many years. He had to have it or he would die. He produced the determination in April of 2006 to stop

therapies on a saturday and he handed away the subsequent Friday.

How long your father has is dependent on numerous aspects. His wellness prior to stopping dialysis, how a lot function his kidneys have at this position

and how significantly urine he is generating, his will to endure.

Kidneys filter the blood from waste materials. With no ample filtering, toxins develop up causing various signs and symptoms, some of which you are

presently viewing – itching, almost certainly some confusion and lethargy.

Permit him to try to eat and consume what he would like at this position. If he refuses foods or fluids at this stage, permit him this. Several family members

attempting to be supportive by trying to pressure their cherished kinds to try to eat due to the fact they experience responsible that their cherished one

particular is “starving to demise”. This is not the case. He is not hungry, consequently you are not starving him. Typically forcing a terminally ill person to

eat leads to other issues — nausea and vomiting, abdominal bloating. It is part of our culture to make people greater with food – will not feel guilty because

he are unable to take in, realize that this possibly just isn’t a aware choice, but a reaction to illness.

He will also commence refusing fluids — exact same problem as previously mentioned. Many family members want to commence IV fluids at this time. If you

artificially introduce fluids into a body whose kidney’s can not deal with the fluid presently existing, then the fluid stays in the entire body creating inflammation

in the legs or fluid in the lungs – this will result in issues with respiration or pain connected with the swelling. Again – do not experience responsible if your

beloved one can not consume.

Some items you can do — thoroughly clean your loved ones mouth out with drinking water or a very delicate mouthwash with a delicate taste. Use a toothette

(stick with a tiny sponge at the finish) to cleanse the mouth and tooth. A toothbrush will almost certainly be also challenging on the gums at this time. Ask your

hospice to offer if they haven’t presently. Utilize a lip balm to the lips usually. Utilize lotion to the epidermis for the itching. Aveeno has a excellent lotion. You

can consider a benadryl cream for the itching as well.

As far as time — most likely a number of times to a few of months – once more relying. Your hospice nurse could probably give you a better notion.

I am sorry for your father’s illness. I was priviledged to care for my father at the stop of his existence. It is the most difficult task there is to care for an sick

loved a single.

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Howdy, I’ve studied and labored in dialysis with ESRD and Kidney Failure for many several years. A lot of men and women who have Kidney problems, have

other issues that occur along with it. Appears to me like your Dad may be producing the choice to not have Dialysis, but on best of his other well being troubles it

is not sure to how extended he will dwell. There are numerous factors that can figure out why the medical professional suggested to reinstate dialysis. From your

concern, you failed to make clear what form of crisis he went via in March. If he has kidney purpose at all, the proportion of his kidney’s that function is what is

trying to keep him alive. When his kidney’s entirely fall short, he will only reside a brief time. Not dialyzing for the duration of ESRD on leading of other health

problems will at some point lead to his kidney’s to fully fall short. If he ended up to go on dialysis, it would almost certainly support out, but there is no ensure.

The doctor would possibly start him out very little by little and remove only tiny amounts of fluid more than long durations of time. It is attainable for him to

endure, if he has his other wellness issues below manage, if he would commence dialysis. If he commences to maintain fluids(edema in his experience, legs, and

body) greatly, then that would be a excellent indication his kidneys have failed. Secondly, he would not be capable to urinate, nor would catheterization be

necessary. All in all, if his kidney’s are the only troubles he is getting, Dialysis would be the response. There is no amount of time I could give you, but I hope

the best for you and your family members. God Bless!

My dad is 67, had had three coronary heart attacks over the last 3 several years. Previous summer he was hospitalized with a MRSA infection and had two vascular surgeries. He is also an insulin type 2 diabetic. After the second surgical treatment he coded and was revived.He expended nine weeks in essential problem 12 weeks inpatient in total, and was acquiring dialysis 3 instances a week.He put in 2 months in rehab and continued dialysis there. On his release in Dec ’06 he no extended needed dialysis. In March he had a heart&kidney crisis and doctors told him that he could require to begon dialysis once more and he refused. He is confined to a bed because of to a muscle tear, and had been on hospice considering that April. He has gotten so thin- urge for food goes up and down, and has now started to itch all more than his human body. It is too late to change again now, this is his choice, but how prolonged can he linger like this? He certainly was not that dependent on the dialysis. Is there a thing that we really should be observing for? Ok, calm down. Your diabetic friends is possibly really experienced about diabetes and his possess kidneys, but he is not a physician or familiar with your body. First, your 2nd exam confirmed development. That’s excellent information. Also, the medical doctor didn’t rush you to the unexpected emergency place for kidney failure, did he? You said you be concerned you aren’t urinating appropriate, but you also said you are hoping to ingest much more. This signifies you have transformed your fluid intake so your “output” so to talk will also modify. I’m certain you know how damaging stress is to the human physique. If you are freaking out about this, you are only hurting oneself… and you do not even know if something is actually inappropriate. Wait around right up until you see the professional. Try to chill out and not stress so a lot that your physique begins freaking out way too. Items are rarely as poor as we assume they are. And if some thing is truly incorrect, then good for you for catching it now. Also, what kind of “buddy” tells you that you have kidney failure prior to you even see the professional??? Try out to encompass oneself with far more hopeful folks.

I went for an annual bodily and my physician instructed me there was a slight lower in kidney perform because my previous physical. I guess the pertinent

amounts are: BUN = 16, Creatinine = one.five. I went in 6 months afterwards and it was: BUN = sixteen, and Creatinine = one.38. He said that even though it

has improved, it is even now not normal and wishes me to see a kidney doctor. My appointment is up coming 30 days.

I mentioned this to a friend who is an superior diabetic and extremely knowledgeable with kidney problems. He stated the composing is on the wall and it is just

45

a make a difference of time just before I am on dialysis or worse. He stated the 1.five Creatinine signifies my kidneys are only funtioning at fifty% capability.

Others I’ve talked to said the amounts will not look that far out of line. In the meantime…

I am freaking out! I’ve by no means had anything occur back again irregular on a blood test just before. I may be turning out to be a hypochondriac more than

this. Ahead of my bodily, I felt very good. Now I’m imagining that my reduce again feels swollen and unpleasant, that I am not urinating right, and so on.

How nervous should I be about this? Is it true that I’m hunting at total kidney failure and/or dialysis ultimately?

I really should almost certainly include that I do a extremely inadequate job of hydrating myself. I go all day with no drinking any drinking water or liquids, besides coffee and a few sips of coke with a meal. Not positive if this could lead to a kidney dilemma, but I’m hoping to drink 8 eyeglasses/day now. I would truly appreciate any info. Thanks. you create like a 6 calendar year outdated, how old are you? if you are worried about your kidneys see a doctor. we cant notify you regardless of whether your kidneys are failing or not. If you happen to be consuming a lot, you may pee a great deal.

The back again ache could be kineys or if on your right facet could be your liver. Go to MD & get a blood test & inquire specifically to contain test for kidneys &

a liver panel. Never fear until you have to. Excellent luck Congratulations on being so joyful! You may or may possibly not have a problem with your kidneys or

something else, you won’t know for sure right up

until you see a medical professional. The quicker, the better. Make sure you don’t forget, existence is stuffed with excellent occasions and

poor. In the unfortunate moments it

really is significantly better to talk with somebody than to give up. There are aways people who treatment, even if they never often look to. get

treatment & very best wishes ten mounts back I tulk a hole bottle of ibuprofen and it created me sic now my back hurts allot when I consume and I have to piss all the time and Im wordy about my kidneys…..I was trying to kill my self back then now I’m the happies iv actually been and I’m depend wordy yeah kidney failure is shown in bloodwork. And you would appear yellow and your eyes would be quite yellow so that is not it. You might be a hypocondriac (and that is not rude ment that is a genuine dissease)

46

I would think about you are getting development pains. Stop worrying about dying, absolutely everyone does it and if you continue at 13 you will be dead by

20. Are living your nutritious lifestyle pressure cost-free.

not confident why you are sooo youthful and scared of your health so a lot. sure you can make up items and want them to be accurate probably trigger you get

more sympathy and stuff attention. but you know what it sounds like you are okay. i am not sure why your leg is like that but kidney failure you would know and

be on machiens if that was the circumstance and feel me its terrible. you would experience out of seven times a single day very good. its extremely tiring and its

terrible you are not acquiring that. it could be apinched nerve that is bugging you and they are unable to uncover nothing wrong with you i would be ok with it if i

were you. just a checkup every year is good for you and bleive me if they discovered somethign they would be the 1st to explain to your parents and then you so

just be comforting and take pleasure in liife. did you know that when you do die your soul is leaving the entire body and returns to wherever we are to be? higher

we’re not of this entire world and we know this i am not confident how much faith you think but God is almost everywhere and he requires treatment of us and

you so just be interesting and go with the flow consider treatment and have a very good day.

Cease stressing about these health-related problem that you will not have.You are thirteen yrs aged start residing your existence. Are you sleeping nicely? Are

you consuming a suitable diet program? So given that all the blood function has came back Typical YOU are fine. The Dr stated you are healthy.

so i’ve been to the hospital a number of times in the past 5 months for a lot of factors. The medical professionals have told me there is nothing wrong with me

and i have axiety problems( that means i am forcing myself to consider there is some thing incorrect with me and thats what is causeing the syptoms.) I am fairly

much about all of the indicators exept one. The symptom i nonetheless have is in my leg. i have been finding truly random pains in my legs the previous couple

of months and a couple minutes in the past my leg began to experience really weak. it feels greater now but i have go through that kidney failure can show up in

your legs. i am thirteen years previous and medical professionals say im properly nutritious. i am not diabetinc or have high blood pressure. but i am still

extremely conserned. remember to aid me =/

thanks.

also, i went for a chewck up about two weaks ago and they took blood and didnt uncover everything. i observed kindey failure is demonstrated in your

blood. but just assist me anyhow. thanks so muchh.

This would seem like an allergic reaction you need to have to get her to the emergency space as quickly as attainable.

Hi there,

From my own encounters – I used to be allergic to my possess sweat that I was burning off during physical exercise – throughout a time in my lifestyle when I

used to have significant toxic compounds stored inside of my human body body fat. I at some point learned that itching or rashes are signs or symptoms of

47

maladies that could become significantly even worse if in no way healed with excellent selections.

Despite the fact that I have noticed that most root troubles for ‘skin’ problems for myself and others has usually usually been from extended and or quick phrase

allergic reactions to ‘something’ Mixed WITH a weakened lymph liver kidney skin and immune programs – IF the adhering to signs would ever before occur – I

feel the worst rash one particular may well probably have quickly acquired is from deadly bacterial meningitis, BUT bacterial meningitis would be Very Rare.

The two quotations beneath are from: <> http://en.wikipedia.org/wiki/Bacterial_Meningitis <>

<> “IF a rash is current, it could indicate a specific cause of meningitis for instance, meningitis caused by meningococcal bacteria might be accompanied by a

characteristic rash.” <>

<> “The MOST frequent symptoms of meningitis are headache and neck stiffness connected with fever, confusion or altered consciousness, vomiting, and an

inability to tolerate mild (photophobia) or loud noises (phonophobia). Occasionally, specially in modest youngsters, only nonspecific symptoms may possibly be

current, such as irritability and drowsiness.” <>

For further particulars see: <> http://www.cdc.gov/meningitis/about/faq.html <>

<><>

To help you with much more information on itch rash ailments and for long phrase answers TO THEM ALL – the adhering to link has considerable info

inside of a ‘report’ I lately posted:

<> http://answers.yahoo.com/concern/index?qid=20091113104039AAbnGet <>

I definitely hope what you find out will assist you to make a decision on the proper selections that will treatment your painful malady in the foreseeable future.

My best to you and yours,

AI – self taught nutritionIsT ><+>[(-:]

my niece has a kidney illness and for two week, she has been getting this medicine, and is itching and c/o of her human body getting scorching. nose

bleeding. now she is inflammation from her abdomen to her legs and is in excellent soreness.

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hmm not positive, id like to know as properly

I ate cold sizzling pet dogs when I was a child too. Not one difficulty. And my kids ate Vienna sausages…shut to the identical. Once again, no problems.

I dont think it would lead to his kidneys to fail… but it could have bacteria that is unsafe to humans.

NO!!!

I have been ingesting cold hot canine for 50 a long time and I’m ok, at your age maybe if you had a much better option of what to operate your body on

may well be a great concept.

No as they are previously cooked prior to offering so all protected.

No, they will not lead to his kidneys to fall short. Be positive to acquire “totally cooked” very hot pet dogs. They are pretty considerably like most pacjkaged

lunch meats. The heating is mainly for the flavor of the specific andf it is what makes them “hot”. If you are genuinely anxious and want peace of head, cook a

few in the microwave and set them in the frig to calme ahead of serving them.

Wow this keeps coming up, yet again and yet again. Initial off, retain in thoughts that all scorching dogs are completely cooked by the maker. So, there’s no

dilemma there. Secondly, there is a very Extremely minimal danger of coming in contact with “Listeria”, a bacteria which can, repeat CAN, be found in hot pet

dogs and other cooked deli meats. Heating these meats will get rid of the germs.

However, the thing to bear in mind is that only .seven for each 100,000 healthful folks are contaminated with virulent Listeria each and every calendar year and

of those thirty% of cases are expecting ladies and practically 70% are immune compromized folks.

So, permit him eat the cold canines and preserve your concerns for a thing crucial, like when he begins to date.

I have an eight calendar year outdated who only eats sizzling canines cold. He is grossed out if I heat them up. I’ve listened to they can cause kidneys to fall

short.

they poke a needle via your again to get the sample out…. u just relaxation in a different posture right after that

A kidney biopsy is completed employing a lengthy skinny needle place by means of the back (flank) into the kidney. This is referred to as a percutaneous kidney

biopsy. A tissue sample is taken and sent to a lab. It is seemed at underneath a microscope. The sample can support your medical professional see how healthful

your kidney is and look for any difficulties.ou will need to have to get off all or most of your clothing. You will have on a gown. Ahead of the biopsy, you may

49

possibly be given a sedative by way of an intravenous (IV) line in a vein in your arm. The sedative will aid you loosen up and lie even now throughout the

biopsy.

You will be requested to lie facedown on an examination table. A sandbag, a organization pillow, or a rolled towel will be positioned below your body to

assistance your stomach. It is really essential that you follow your doctor’s instructions about respiration, keeping your breath, and lying nonetheless

although the biopsy is getting carried out.

Your doctor will take a look at your again and may mark the biopsy site by generating a minor dent in your epidermis with a pencil or tool. The biopsy may be

accomplished on either the right or the left kidney. The web site will be cleaned with a particular soap. Your doctor then gives you nearby anesthetic to numb

the location where the biopsy needle will be inserted.

Your medical doctor places the biopsy needle by way of the pores and skin even though looking at your kidney with ultrasound. You will be asked to maintain

your breath and keep very even now whilst the needle is set into the kidney.

The needle is removed immediately after the tissue sample is taken. Stress is place on the biopsy website for a number of minutes to quit the bleeding. Then a

bandage is place on the site. The biopsy normally requires 15 to thirty minutes.

Immediately after the biopsy, you will rest in mattress for six to 24 several hours. Your pulse, blood pressure, and temperature will be checked frequently right

after the biopsy. You may truly feel a brief sting or pinch when the numbing medication is place in. When the biopsy needle is set in, you may possibly feel a

sharp soreness for a few seconds.

It is typical to really feel some muscle mass soreness in the location of the biopsy for 2 to 3 times right after the biopsy. You might have a small volume of

bleeding on the bandage after the biopsy. Biopsy benefits are completely ready in two to four days. If assessments are done to locate infections, it may

possibly take several weeks for the benefits to be all set.

What you have to do following the biopsy is completed will count on what the biopsy tells the medical doctor.

Their is no recognized Remedy for CRF or Nephritis in the traditional technique of medication, finally they place you on a dialysis.

Homeopathy is your very best bet.

Study these beneath websites for extra info.[these internet sites are not mine but i searched them for u]

[tell your signs in depth so that i may possibly support u a lot more]

50

Some more information:

1. 6c, 30c, 200c , a thousand do is potency of the medicines. 2. Dont put any sort of perfume or something that smells great or negative 3. Dont take any foodstuff 1 hour prior to or right after taking homeopathy medicines. four. Just take it straight on tongue, 1 dose is three drops for the duration of the program of homeopathy medicines. 1. Constantly shake the bottle 10 instances prior to getting any dose. 2. Homeopathy medicines are without any aspect effects if taken below supervision of a certified physician. 3. Purchase homeopathy medicines from primary homeopathy pharmacies, like schwabe, reckeweg, helios and so forth 4. Take in alot of fruits like oranges, applies. nine. Operate a mile each day and you will never ever want a physician. 10. Homeopathy is a two hundred year outdated science that treats a affected person according to individual symptoms, as every single body has exclusive

symptoms, so may be one particular homeopathy medicines will have no effect on the an additional person with exact same condition with various signs.

Consequently the notion of clinical trials is not valid in the homeopathic context.

probably 5 more ahead of to a lot uric acid in her blood

I’m so sorry, But I do not feel it will be prolonged now remain with her & say your goodbyes but most of all give her your really like.God bless.

Kidney failure can be managed with dialysis nonetheless aside from transplantation there is no remedy or adequate conduite for liver failure. You actually require

to converse to the medical professionals to get an idea of the prognosis as they know her circumstance nicely. It possibly would not be much longer offered the

hypotension and multiorgan failure. Sorry.

Individuals can are living for days when their kidneys & liver are shutting down. Folks do not die all at when when this happens…it is gradual. She is almost

certainly obtaining much more confused & sleeping much more, all signs that her physique is slowing down.The finest issue you can do is to continue to be by

her facet, maintain her hand, & inform her how a lot you adore her. She requirements to hear that & you need to have to tell her. Be with her for as lengthy as she

has still left. God bless.

my mother is in the hospital, she has pneumonia and her kidneys and liver have failed. The Dr says she wont recover, I want to know how extended she is gonna previous. Her body temp is 84 and blood strain in 56/18 but its been two days she passed on final night time

fsgssucks/blogspot.com Today has been a tough day : FSGS Sucks Actually, this entire week has been hell. Yup...that about sums it up. And if you don't like to read things where people are complaining about their lives, then you might want to skip this particular post, because that's all I'm gonna do.

51

It wasn't as if I wasn't fully aware that this week would suck, but that doesn't really make it any better. We move 2 weeks from yesterday, and as such, there are still a LOT of little details to wrap up. And this week, I've been in software training on the north side of town all day, every day. It's been a tough training class too, and it's requiring a lot of my focus, but so is everything else. Every single second that I've been on break has been spent on the phone trying to tie up some loose end. I've been on the phone with our new mortgage company, our moving company, our relocation company, our realtor, our builder, my general practitioner, my nephrologist, my clinical trial coordinator, Mayo clinic, The Nephcure Foundation, The National Kidney Foundation, my new insurance agent and my bank. I was on the phone so much yesterday that, by noon, my batter was down to 20%. It's been......consuming. And there's no internet on our computers because The Embassy Suites is too cheap to let us have it for free, which means I'm doing all of this internet searching for phone numbers, addresses/directions, email attachments. I tried to send a copy of my labs to Mayo clinic today because I had them in the cloud (on Dropbox) but I couldn't attach a file from there using my mobile email (arg). I had so much anxiety today that I hurried up and worked a few labs ahead so I could leave early. I wanted to hit up all of my doctor's offices and sign medical release forms so they could send my files to Mayo. While I was near St. Francis, I stopped in to see my friend who just had her baby at 12:05am. This has been one of the few bright spots in my week. Her little boy is absolutely delicious. I was able to sit with her and chat while her husband left to get their other son from daycare to bring him back to the hospital. We got to catch up and I even get to take the new baby and their family photos next week as a gift to them!!! So excited about that! Sadly, I didn't realize how much that visit would affect me tonight. I sat there at dinner, spacing out, and just started crying. Crying because that little baby smelled so good...he was so tiny. I forgot how soft newborn baby hair and skin is. And those little white dots on their nose right after their born...and the incredibly tiny fingernails. I guess the last time I walked through those doors at the hospital I was pushing a baby out, never knowing that was probably the last time. I still think a part of me....wait, I KNOW a part of me, still nurtures the hope that maybe, just MAYBE, I'll be lucky enough to get to experience pregnancy again. But tonight, I was overcome by sadness at the thought that maybe I won't be that lucky. It's hard, and feels very unfair right now. I'm a chosen one!!!! : FSGS Sucks A few weeks ago, I completed an application to take part in the National Kidney Foundation's advocacy program. The timing seriously couldn't be worse, considering my move and everything, but I feel so passionately about educating people that I couldn't pass up the chance, and I'm so glad I didn't because I got off the phone tonight with the NKF and I'M GOING!!!! I feel so very honored as only 20 people were selected!!! I'll fly out on March 7th, and we'll be doing a training session in the afternoon. There will be an event that evening, and then spending the next day on the hill talking to members of Congress, educating them about NKF initiatives (including extended Medicare coverage for immuno-suppressants for transplant patients) as well as just educating them about kidney disease. And then I'll fly home the evening of March 8th, which is World Kidney Day. I'm so excited. I can't WAIT to share this experience with you!!!!! This one's for Macy : FSGS Sucks Macy is this adorable little girl who has FSGS. She had a kidney donated to her by a family friend and the transplant took place on June 29, 2011 in Chicago. Please understand that a transplant is not a CURE. It's another treatment. And I say this because, and it seems especially so in the case of these kids, that their battle is daily. It's constant. It's mom's measuring the amount of water their kids drink every day to make sure they don't drink too much (dialysis) or drink enough (transplant). It's constantly switching gears, fighting bugs/viruses. I bitch a lot, but I still consider myself lucky because I'm stable. But today, Macy was admitted to the hospital in Denver (where they live) because her creatinine (a measure of kidney function) jumped up (and up is not good). Hopefully it's dehydration and they can give her fluids and she can be on her way. I'm just asking people that read this to take a moment and send out a prayer/good vibe/positive energy towards this adorable little girl. I need to meditate : FSGS Sucks ...because I'm feeling completely out of control. This is not a cry for help, so please don't take it that way. I fully understand what is happening, but I need to write about it. I think I've said it before, but I'll say it again. To say that I'm busy is such a wild understatement. I feel as though

52

I only have the ability to focus on any one thing for about 5 minutes. That's not an exaggeration....just fact. Driving is hard. My mind is always wandering. I'm supposed to be working at home. I'm not doing such a great job at that either. I sit down in front of the computer to get started, and then 2 hours later go by and I've done nothing. I read the same paragraphs over and over and over. I know they say meditation helps, and I'm going to try. I'm positive my friend Holly would be crying out "Hallelujah" right now reading that sentence :) I'm still working out, although even now, being home a lot, I still feel like I'm trying to squeeze that in. And even when I start working out again, the good feelings only last so long because quickly the guilt creeps in because I'm not working out enough. I stay up too later because it's the only quiet time, and then I take a Xanax (because we switched my happy pill meds for my IBS) at night, and I swear I could sleep a solid 12 hours a day and feel minimally rested. And if you can't tell, I'm REALLY hard on myself..by far the worst critic I'll ever have. I need to feel centered. I need to take a deep breath. I need space to stretch out because I feel like my limbs are constricted. Even having all this time at home hasn't helped because every single freaking day there's some kind of commitment that I have. Some phone call I HAVE to make, some errand I HAVE to run, some paperwork I FORGOT to complete, some appointment I HAVE to go to....it's never fucking ending. I NEED a break. I NEED all of this move business/instability to end. Pages Home Here's my story.... Thursday, March 8, 2012 I'm sitting here writing this blog post from the 4th floor of the Russel Senate Office Building. I have a few minutes before my 2:00appointment with Sen. Dan Coates' legislative aid, so I thought I'd take a few minutes to collect my thoughts. This day mattered. It mattered to me, and even though the timing was less than ideal, I want to thank my husband for understanding how important it was to me to be here and advocate for me and others like me. I've learned so much in the last two days. Not only about kidney advocacy, but also the political process. DC is a stunningly beautiful city (doesnt hurt that its nearly 70 degrees and sunny :) and I look forward to coming back here one day with Joacim and Izzy. Whether or not we change anyone's mind today, at least I know I educated one person about what it's like living with CKD. It's so hard to read people here in this big political machine....watching all of the moving parts has been fascinating, and the number of navy blue suits is mind-boggling! I even chatted with a Capitol Police officer while I was standing in front of it, trying not to blow away :) Okay...few hours later now. I'm sitting on the plane, ready to fly home, and I can't begin to describe how tired I am, or how swollen I am. But it was worth it. The kidney community is small but incredibly welcoming...we're all have a story to tell. I shared a cab to the airport with 2 kidney donors...one was an altruistic donor and the other was donating her kidney to her dad 7 DAYS FROM TODAY! How amazing is that? I also met another FSGS sufferer...she's on her 2nd transplant right now and is doing really well. I saw a fistula for the first time, and it wasn't nearly as scary as the ones I'd seen on You Tube (granted, she had it done while she was in France and they did it cosmetically on the underside of her forearm). These people I'll stay in contact with, and I can't wait to share some pictures from the day. :) Location:World Kidney Day at 7:57 PM 1 comments Email ThisBlogThis!Share to TwitterShare to Facebook Links to this post Tuesday, March 6, 2012 It's been awhile / Advocacy Day / Celebrity Apprentice Can't believe it was the middle of February when I posted the last time. There was just no way I could keep up with everything, what with the relocation and all. We're up here in Minnesota now, not completely settled yet, but closer than we were. What I AM excited about is my trip to Washington DC today for the National Kidney Foundation's Advocacy Day!!! Sadly, I won't arrive until late tonight because there's a group of other advocates meeting for dinner and a chat. No worries...I'll meet them all on Wednesday. I can't wait to share my learnings and adventures with everyone who reads this blog. Also, I wanted to share something else with you. Real Housewife of New Jersey star, Teresa Giudice, is helping us bring some MUCH needed attention to FSGS and Nephrotic Syndrome through her appearance on this season's "The Celebrity Apprentice". Please watch the following PSA...the kids are so cute!!! http://www.youtube.com/watch?v=iHXy5gDshOU&feature=youtu.be at 3:52 PM 1 comments Email ThisBlogThis!Share to TwitterShare to Facebook Links to this post Thursday, February 16, 2012

53

Today has been a tough day : FSGS Sucks Actually, this entire week has been hell. Yup...that about sums it up. And if you don't like to read things where people are complaining about their lives, then you might want to skip this particular post, because that's all I'm gonna do. It wasn't as if I wasn't fully aware that this week would suck, but that doesn't really make it any better. We move 2 weeks from yesterday, and as such, there are still a LOT of little details to wrap up. And this week, I've been in software training on the north side of town all day, every day. It's been a tough training class too, and it's requiring a lot of my focus, but so is everything else. Every single second that I've been on break has been spent on the phone trying to tie up some loose end. I've been on the phone with our new mortgage company, our moving company, our relocation company, our realtor, our builder, my general practitioner, my nephrologist, my clinical trial coordinator, Mayo clinic, The Nephcure Foundation, The National Kidney Foundation, my new insurance agent and my bank. I was on the phone so much yesterday that, by noon, my batter was down to 20%. It's been......consuming. And there's no internet on our computers because The Embassy Suites is too cheap to let us have it for free, which means I'm doing all of this internet searching for phone numbers, addresses/directions, email attachments. I tried to send a copy of my labs to Mayo clinic today because I had them in the cloud (on Dropbox) but I couldn't attach a file from there using my mobile email (arg). I had so much anxiety today that I hurried up and worked a few labs ahead so I could leave early. I wanted to hit up all of my doctor's offices and sign medical release forms so they could send my files to Mayo. While I was near St. Francis, I stopped in to see my friend who just had her baby at 12:05am. This has been one of the few bright spots in my week. Her little boy is absolutely delicious. I was able to sit with her and chat while her husband left to get their other son from daycare to bring him back to the hospital. We got to catch up and I even get to take the new baby and their family photos next week as a gift to them!!! So excited about that! Sadly, I didn't realize how much that visit would affect me tonight. I sat there at dinner, spacing out, and just started crying. Crying because that little baby smelled so good...he was so tiny. I forgot how soft newborn baby hair and skin is. And those little white dots on their nose right after their born...and the incredibly tiny fingernails. I guess the last time I walked through those doors at the hospital I was pushing a baby out, never knowing that was probably the last time. I still think a part of me....wait, I KNOW a part of me, still nurtures the hope that maybe, just MAYBE, I'll be lucky enough to get to experience pregnancy again. But tonight, I was overcome by sadness at the thought that maybe I won't be that lucky. It's hard, and feels very unfair right now. at 10:30 PM 2 comments Email ThisBlogThis!Share to TwitterShare to Facebook Links to this post Monday, February 13, 2012 I'm a chosen one!!!! : FSGS Sucks A few weeks ago, I completed an application to take part in the National Kidney Foundation's advocacy program. The timing seriously couldn't be worse, considering my move and everything, but I feel so passionately about educating people that I couldn't pass up the chance, and I'm so glad I didn't because I got off the phone tonight with the NKF and I'M GOING!!!! I feel so very honored as only 20 people were selected!!! I'll fly out on March 7th, and we'll be doing a training session in the afternoon. There will be an event that evening, and then spending the next day on the hill talking to members of Congress, educating them about NKF initiatives (including extended Medicare coverage for immuno-suppressants for transplant patients) as well as just educating them about kidney disease. And then I'll fly home the evening of March 8th, which is World Kidney Day. I'm so excited. I can't WAIT to share this experience with you!!!!! at 9:13 PM 1 comments Email ThisBlogThis!Share to TwitterShare to Facebook Links to this post Wednesday, February 8, 2012 This one's for Macy : FSGS Sucks Macy is this adorable little girl who has FSGS. She had a kidney donated to her by a family friend and the transplant took place on June 29, 2011 in Chicago. Please understand that a transplant is not a CURE. It's another treatment. And I say this because, and it seems especially so in the case of these kids, that their battle is daily. It's constant. It's mom's measuring the amount of water their kids drink every day to make sure they don't drink too much (dialysis) or drink enough (transplant). It's constantly switching gears, fighting bugs/viruses. I bitch a lot, but I still consider myself lucky because I'm stable. But today, Macy was admitted to the hospital in Denver (where they live) because her creatinine (a measure of kidney function) jumped up (and up is not good). Hopefully it's dehydration and they can give her fluids and she can be on her way. I'm just asking people that read this to take a moment and send out a prayer/good vibe/positive energy towards this adorable little girl.

54

And if you read this Kelly, I hope you don't mind but I "borrowed" this photo from your CaringBridge website. I think it's so important to put a face with every name... at 9:31 PM 1 comments Email ThisBlogThis!Share to TwitterShare to Facebook Links to this post Labels: Macy I need to meditate : FSGS Sucks ...because I'm feeling completely out of control. This is not a cry for help, so please don't take it that way. I fully understand what is happening, but I need to write about it. I think I've said it before, but I'll say it again. To say that I'm busy is such a wild understatement. I feel as though I only have the ability to focus on any one thing for about 5 minutes. That's not an exaggeration....just fact. Driving is hard. My mind is always wandering. I'm supposed to be working at home. I'm not doing such a great job at that either. I sit down in front of the computer to get started, and then 2 hours later go by and I've done nothing. I read the same paragraphs over and over and over. I know they say meditation helps, and I'm going to try. I'm positive my friend Holly would be crying out "Hallelujah" right now reading that sentence :) I'm still working out, although even now, being home a lot, I still feel like I'm trying to squeeze that in. And even when I start working out again, the good feelings only last so long because quickly the guilt creeps in because I'm not working out enough. I stay up too later because it's the only quiet time, and then I take a Xanax (because we switched my happy pill meds for my IBS) at night, and I swear I could sleep a solid 12 hours a day and feel minimally rested. And if you can't tell, I'm REALLY hard on myself..by far the worst critic I'll ever have. I need to feel centered. I need to take a deep breath. I need space to stretch out because I feel like my limbs are constricted. Even having all this time at home hasn't helped because every single freaking day there's some kind of commitment that I have. Some phone call I HAVE to make, some errand I HAVE to run, some paperwork I FORGOT to complete, some appointment I HAVE to go to....it's never fucking ending. I NEED a break. I NEED all of this move business/instability to end. at 4:52 PM 3 comments Email ThisBlogThis!Share to TwitterShare to Facebook Links to this post Monday, February 6, 2012 It's not as easy to recover : FSGS Sucks ....from a night out with the girls. For those of you that don't know where I'm from, I live in Indianapolis. And unless you live under a rock, you know that my city hosted the Super Bowl on Sunday. Annnnnd with the game comes along a host of seriously fun activities. So my girls and I decided to brave the masses (and I do mean MASSES) on Friday night and have a night out on the town. I was out for 8 hours, and had a total of 4 drinks, and a 36 hour hangover. I soooo wish I was kidding. I got home at around 4:30am....yes...AM. We went out to eat...went dancing...we had a FANTASTIC time. I seriously can't remember the last time I laughed that much...seriously. But I had to get up at 9am because we were having a surprise party for my Grandma about 2 hours away, and I was responsible for the entrees and the cake so I HAD to get up and go. I made it through Grandma's party and we actually stayed a lot longer than I thought we would. My colon, of course, was pissed off. It could've also been that damn Red Bull...apparently 37 year-olds can't drink those anymore :) Who knew? THANK GOODNESS Izzy was staying with Grandma and Grandpa. I got home, laid on the sofa with my heating pad and fell asleep. I was in bed by 9:30pm..asleep by 11pm, and slept till noon the next day. I DID feel better, thankfully, when I woke up. Holy hell. I was never drunk....but that was the worst hangover I've had in a long time. I CLEARLY cannot go out and pretend that I'm something I no longer am...it's a sobering reminder. But I'll always have THAT night to remember, and that's enough for me for now :)

Hemodoc.com Today has been a tough day : FSGS Sucks Actually, this entire week has been hell. Yup...that about sums it up. And if you don't like to read things where people are complaining about their lives, then you might want to skip this particular post, because that's all I'm gonna do. It wasn't as if I wasn't fully aware that this week would suck, but that doesn't really make it any better. We move 2 weeks from yesterday, and as such, there are still a LOT of little details to wrap up. And this week, I've been in software training on the north side of town all day, every day. It's been a tough training class too, and it's requiring a lot of my focus, but so is everything else.

55

Every single second that I've been on break has been spent on the phone trying to tie up some loose end. I've been on the phone with our new mortgage company, our moving company, our relocation company, our realtor, our builder, my general practitioner, my nephrologist, my clinical trial coordinator, Mayo clinic, The Nephcure Foundation, The National Kidney Foundation, my new insurance agent and my bank. I was on the phone so much yesterday that, by noon, my batter was down to 20%. It's been......consuming. And there's no internet on our computers because The Embassy Suites is too cheap to let us have it for free, which means I'm doing all of this internet searching for phone numbers, addresses/directions, email attachments. I tried to send a copy of my labs to Mayo clinic today because I had them in the cloud (on Dropbox) but I couldn't attach a file from there using my mobile email (arg). I had so much anxiety today that I hurried up and worked a few labs ahead so I could leave early. I wanted to hit up all of my doctor's offices and sign medical release forms so they could send my files to Mayo. While I was near St. Francis, I stopped in to see my friend who just had her baby at 12:05am. This has been one of the few bright spots in my week. Her little boy is absolutely delicious. I was able to sit with her and chat while her husband left to get their other son from daycare to bring him back to the hospital. We got to catch up and I even get to take the new baby and their family photos next week as a gift to them!!! So excited about that! Sadly, I didn't realize how much that visit would affect me tonight. I sat there at dinner, spacing out, and just started crying. Crying because that little baby smelled so good...he was so tiny. I forgot how soft newborn baby hair and skin is. And those little white dots on their nose right after their born...and the incredibly tiny fingernails. I guess the last time I walked through those doors at the hospital I was pushing a baby out, never knowing that was probably the last time. I still think a part of me....wait, I KNOW a part of me, still nurtures the hope that maybe, just MAYBE, I'll be lucky enough to get to experience pregnancy again. But tonight, I was overcome by sadness at the thought that maybe I won't be that lucky. It's hard, and feels very unfair right now. I'm a chosen one!!!! : FSGS Sucks A few weeks ago, I completed an application to take part in the National Kidney Foundation's advocacy program. The timing seriously couldn't be worse, considering my move and everything, but I feel so passionately about educating people that I couldn't pass up the chance, and I'm so glad I didn't because I got off the phone tonight with the NKF and I'M GOING!!!! I feel so very honored as only 20 people were selected!!! I'll fly out on March 7th, and we'll be doing a training session in the afternoon. There will be an event that evening, and then spending the next day on the hill talking to members of Congress, educating them about NKF initiatives (including extended Medicare coverage for immuno-suppressants for transplant patients) as well as just educating them about kidney disease. And then I'll fly home the evening of March 8th, which is World Kidney Day. I'm so excited. I can't WAIT to share this experience with you!!!!! This one's for Macy : FSGS Sucks Macy is this adorable little girl who has FSGS. She had a kidney donated to her by a family friend and the transplant took place on June 29, 2011 in Chicago. Please understand that a transplant is not a CURE. It's another treatment. And I say this because, and it seems especially so in the case of these kids, that their battle is daily. It's constant. It's mom's measuring the amount of water their kids drink every day to make sure they don't drink too much (dialysis) or drink enough (transplant). It's constantly switching gears, fighting bugs/viruses. I bitch a lot, but I still consider myself lucky because I'm stable. But today, Macy was admitted to the hospital in Denver (where they live) because her creatinine (a measure of kidney function) jumped up (and up is not good). Hopefully it's dehydration and they can give her fluids and she can be on her way. I'm just asking people that read this to take a moment and send out a prayer/good vibe/positive energy towards this adorable little girl. I need to meditate : FSGS Sucks ...because I'm feeling completely out of control. This is not a cry for help, so please don't take it that way. I fully understand what is happening, but I need to write about it. I think I've said it before, but I'll say it again. To say that I'm busy is such a wild understatement. I feel as though I only have the ability to focus on any one thing for about 5 minutes. That's not an exaggeration....just fact. Driving is hard. My mind is always wandering. I'm supposed to be working at home. I'm not doing such a great job at that either. I sit down in front of the computer to get started, and then 2 hours later go by and I've done nothing. I read the same paragraphs over and over and over. I know they say meditation helps, and I'm going to try. I'm positive my friend Holly

56

would be crying out "Hallelujah" right now reading that sentence :) I'm still working out, although even now, being home a lot, I still feel like I'm trying to squeeze that in. And even when I start working out again, the good feelings only last so long because quickly the guilt creeps in because I'm not working out enough. I stay up too later because it's the only quiet time, and then I take a Xanax (because we switched my happy pill meds for my IBS) at night, and I swear I could sleep a solid 12 hours a day and feel minimally rested. And if you can't tell, I'm REALLY hard on myself..by far the worst critic I'll ever have. I need to feel centered. I need to take a deep breath. I need space to stretch out because I feel like my limbs are constricted. Even having all this time at home hasn't helped because every single freaking day there's some kind of commitment that I have. Some phone call I HAVE to make, some errand I HAVE to run, some paperwork I FORGOT to complete, some appointment I HAVE to go to....it's never fucking ending. I NEED a break. I NEED all of this move business/instability to end. Pages Home Here's my story.... Thursday, March 8, 2012 I'm sitting here writing this blog post from the 4th floor of the Russel Senate Office Building. I have a few minutes before my 2:00appointment with Sen. Dan Coates' legislative aid, so I thought I'd take a few minutes to collect my thoughts. This day mattered. It mattered to me, and even though the timing was less than ideal, I want to thank my husband for understanding how important it was to me to be here and advocate for me and others like me. I've learned so much in the last two days. Not only about kidney advocacy, but also the political process. DC is a stunningly beautiful city (doesnt hurt that its nearly 70 degrees and sunny :) and I look forward to coming back here one day with Joacim and Izzy. Whether or not we change anyone's mind today, at least I know I educated one person about what it's like living with CKD. It's so hard to read people here in this big political machine....watching all of the moving parts has been fascinating, and the number of navy blue suits is mind-boggling! I even chatted with a Capitol Police officer while I was standing in front of it, trying not to blow away :) Okay...few hours later now. I'm sitting on the plane, ready to fly home, and I can't begin to describe how tired I am, or how swollen I am. But it was worth it. The kidney community is small but incredibly welcoming...we're all have a story to tell. I shared a cab to the airport with 2 kidney donors...one was an altruistic donor and the other was donating her kidney to her dad 7 DAYS FROM TODAY! How amazing is that? I also met another FSGS sufferer...she's on her 2nd transplant right now and is doing really well. I saw a fistula for the first time, and it wasn't nearly as scary as the ones I'd seen on You Tube (granted, she had it done while she was in France and they did it cosmetically on the underside of her forearm). These people I'll stay in contact with, and I can't wait to share some pictures from the day. :) Location:World Kidney Day at 7:57 PM 1 comments Email ThisBlogThis!Share to TwitterShare to Facebook Links to this post Tuesday, March 6, 2012 It's been awhile / Advocacy Day / Celebrity Apprentice Can't believe it was the middle of February when I posted the last time. There was just no way I could keep up with everything, what with the relocation and all. We're up here in Minnesota now, not completely settled yet, but closer than we were. What I AM excited about is my trip to Washington DC today for the National Kidney Foundation's Advocacy Day!!! Sadly, I won't arrive until late tonight because there's a group of other advocates meeting for dinner and a chat. No worries...I'll meet them all on Wednesday. I can't wait to share my learnings and adventures with everyone who reads this blog. Also, I wanted to share something else with you. Real Housewife of New Jersey star, Teresa Giudice, is helping us bring some MUCH needed attention to FSGS and Nephrotic Syndrome through her appearance on this season's "The Celebrity Apprentice". Please watch the following PSA...the kids are so cute!!! http://www.youtube.com/watch?v=iHXy5gDshOU&feature=youtu.be at 3:52 PM 1 comments Email ThisBlogThis!Share to TwitterShare to Facebook Links to this post Thursday, February 16, 2012 Today has been a tough day : FSGS Sucks Actually, this entire week has been hell. Yup...that about sums it up. And if you don't like to read things where people are complaining about their lives, then you might want to skip this particular post, because that's all I'm gonna do.

57

It wasn't as if I wasn't fully aware that this week would suck, but that doesn't really make it any better. We move 2 weeks from yesterday, and as such, there are still a LOT of little details to wrap up. And this week, I've been in software training on the north side of town all day, every day. It's been a tough training class too, and it's requiring a lot of my focus, but so is everything else. Every single second that I've been on break has been spent on the phone trying to tie up some loose end. I've been on the phone with our new mortgage company, our moving company, our relocation company, our realtor, our builder, my general practitioner, my nephrologist, my clinical trial coordinator, Mayo clinic, The Nephcure Foundation, The National Kidney Foundation, my new insurance agent and my bank. I was on the phone so much yesterday that, by noon, my batter was down to 20%. It's been......consuming. And there's no internet on our computers because The Embassy Suites is too cheap to let us have it for free, which means I'm doing all of this internet searching for phone numbers, addresses/directions, email attachments. I tried to send a copy of my labs to Mayo clinic today because I had them in the cloud (on Dropbox) but I couldn't attach a file from there using my mobile email (arg). I had so much anxiety today that I hurried up and worked a few labs ahead so I could leave early. I wanted to hit up all of my doctor's offices and sign medical release forms so they could send my files to Mayo. While I was near St. Francis, I stopped in to see my friend who just had her baby at 12:05am. This has been one of the few bright spots in my week. Her little boy is absolutely delicious. I was able to sit with her and chat while her husband left to get their other son from daycare to bring him back to the hospital. We got to catch up and I even get to take the new baby and their family photos next week as a gift to them!!! So excited about that! Sadly, I didn't realize how much that visit would affect me tonight. I sat there at dinner, spacing out, and just started crying. Crying because that little baby smelled so good...he was so tiny. I forgot how soft newborn baby hair and skin is. And those little white dots on their nose right after their born...and the incredibly tiny fingernails. I guess the last time I walked through those doors at the hospital I was pushing a baby out, never knowing that was probably the last time. I still think a part of me....wait, I KNOW a part of me, still nurtures the hope that maybe, just MAYBE, I'll be lucky enough to get to experience pregnancy again. But tonight, I was overcome by sadness at the thought that maybe I won't be that lucky. It's hard, and feels very unfair right now. at 10:30 PM 2 comments Email ThisBlogThis!Share to TwitterShare to Facebook Links to this post Monday, February 13, 2012 I'm a chosen one!!!! : FSGS Sucks A few weeks ago, I completed an application to take part in the National Kidney Foundation's advocacy program. The timing seriously couldn't be worse, considering my move and everything, but I feel so passionately about educating people that I couldn't pass up the chance, and I'm so glad I didn't because I got off the phone tonight with the NKF and I'M GOING!!!! I feel so very honored as only 20 people were selected!!! I'll fly out on March 7th, and we'll be doing a training session in the afternoon. There will be an event that evening, and then spending the next day on the hill talking to members of Congress, educating them about NKF initiatives (including extended Medicare coverage for immuno-suppressants for transplant patients) as well as just educating them about kidney disease. And then I'll fly home the evening of March 8th, which is World Kidney Day. I'm so excited. I can't WAIT to share this experience with you!!!!! at 9:13 PM 1 comments Email ThisBlogThis!Share to TwitterShare to Facebook Links to this post Wednesday, February 8, 2012 This one's for Macy : FSGS Sucks Macy is this adorable little girl who has FSGS. She had a kidney donated to her by a family friend and the transplant took place on June 29, 2011 in Chicago. Please understand that a transplant is not a CURE. It's another treatment. And I say this because, and it seems especially so in the case of these kids, that their battle is daily. It's constant. It's mom's measuring the amount of water their kids drink every day to make sure they don't drink too much (dialysis) or drink enough (transplant). It's constantly switching gears, fighting bugs/viruses. I bitch a lot, but I still consider myself lucky because I'm stable. But today, Macy was admitted to the hospital in Denver (where they live) because her creatinine (a measure of kidney function) jumped up (and up is not good). Hopefully it's dehydration and they can give her fluids and she can be on her way. I'm just asking people that read this to take a moment and send out a prayer/good vibe/positive energy towards this adorable little girl. And if you read this Kelly, I hope you don't mind but I "borrowed" this photo from your CaringBridge website. I think it's so important to put a face with every name... at 9:31 PM 1 comments Email ThisBlogThis!Share to TwitterShare to Facebook Links to this post Labels: Macy

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I need to meditate : FSGS Sucks ...because I'm feeling completely out of control. This is not a cry for help, so please don't take it that way. I fully understand what is happening, but I need to write about it. I think I've said it before, but I'll say it again. To say that I'm busy is such a wild understatement. I feel as though I only have the ability to focus on any one thing for about 5 minutes. That's not an exaggeration....just fact. Driving is hard. My mind is always wandering. I'm supposed to be working at home. I'm not doing such a great job at that either. I sit down in front of the computer to get started, and then 2 hours later go by and I've done nothing. I read the same paragraphs over and over and over. I know they say meditation helps, and I'm going to try. I'm positive my friend Holly would be crying out "Hallelujah" right now reading that sentence :) I'm still working out, although even now, being home a lot, I still feel like I'm trying to squeeze that in. And even when I start working out again, the good feelings only last so long because quickly the guilt creeps in because I'm not working out enough. I stay up too later because it's the only quiet time, and then I take a Xanax (because we switched my happy pill meds for my IBS) at night, and I swear I could sleep a solid 12 hours a day and feel minimally rested. And if you can't tell, I'm REALLY hard on myself..by far the worst critic I'll ever have. I need to feel centered. I need to take a deep breath. I need space to stretch out because I feel like my limbs are constricted. Even having all this time at home hasn't helped because every single freaking day there's some kind of commitment that I have. Some phone call I HAVE to make, some errand I HAVE to run, some paperwork I FORGOT to complete, some appointment I HAVE to go to....it's never fucking ending. I NEED a break. I NEED all of this move business/instability to end. at 4:52 PM 3 comments Email ThisBlogThis!Share to TwitterShare to Facebook Links to this post Monday, February 6, 2012 It's not as easy to recover : FSGS Sucks ....from a night out with the girls. For those of you that don't know where I'm from, I live in Indianapolis. And unless you live under a rock, you know that my city hosted the Super Bowl on Sunday. Annnnnd with the game comes along a host of seriously fun activities. So my girls and I decided to brave the masses (and I do mean MASSES) on Friday night and have a night out on the town. I was out for 8 hours, and had a total of 4 drinks, and a 36 hour hangover. I soooo wish I was kidding. I got home at around 4:30am....yes...AM. We went out to eat...went dancing...we had a FANTASTIC time. I seriously can't remember the last time I laughed that much...seriously. But I had to get up at 9am because we were having a surprise party for my Grandma about 2 hours away, and I was responsible for the entrees and the cake so I HAD to get up and go. I made it through Grandma's party and we actually stayed a lot longer than I thought we would. My colon, of course, was pissed off. It could've also been that damn Red Bull...apparently 37 year-olds can't drink those anymore :) Who knew? THANK GOODNESS Izzy was staying with Grandma and Grandpa. I got home, laid on the sofa with my heating pad and fell asleep. I was in bed by 9:30pm..asleep by 11pm, and slept till noon the next day. I DID feel better, thankfully, when I woke up. Holy hell. I was never drunk....but that was the worst hangover I've had in a long time. I CLEARLY cannot go out and pretend that I'm something I no longer am...it's a sobering reminder. But I'll always have THAT night to remember, and that's enough for me for now :)

www.ihatedialysis.com/ Sagamore Hills man finds that donating a kidney is no simple thing Published: Sunday, February 26, 2012, 8:15 AM Updated: Sunday, February 26, 2012, 9:03 AM By Angela Townsend, The Plain Dealer One year must pass before a kidney donor and recipient can meet and only if both parties agree to it. "For me, personally, it would be interesting for me to meet him," Curtis Hendrix says of the California man who now lives with Hendrix's kidney. "But if I don't meet him, that's fine." CLEVELAND, Ohio -- At 2:40 a.m. Pacific time on Dec. 13, a man in his 50s received a new kidney following a 3 1/2-hour surgery in California. He had been on the transplant wait list for more than four years. The kidney came from Curtis Hendrix of Sagamore Hills, who was recovering in a room in the Cleveland Clinic's Miller Family Pavilion that night. Six months earlier, Hendrix, 21, had decided he wanted to donate a kidney. To a stranger. The idea, he said, came to him in a dream. The dream was "the most vivid, intense, realistic dream I've ever had," Hendrix said. "It was long. It came out of the blue." The next day, with the

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dream replaying in his mind, Hendrix started researching how to go about becoming a kidney donor. Despite the risk involved with any surgery, and despite some vocal opposition from a few friends and relatives who thought he was a bit crazy, Hendrix was confident that his chances of having a successful surgery and outcome were good. His hope from the start was to help someone in need without drawing attention to himself. One week after having the dream, talking to family and friends, and researching kidney donation online, Hendrix finally called the Clinic's transplant center and shared the revelation that he wanted to donate a kidney. The administrative assistant who fielded the call took Hendrix's name, address and phone number. Someone would call him back, she told him. About paired exchange transplants In late 2006, little over a year before the founding of the National Kidney Registry, the Alliance for Paired Donation was formed in suburban Toledo. Like NKR, the alliance also specializes in facilitating paired exchange transplants as a way to address the number of available kidney transplants. A kidney chain is made up of donor-recipient pairs in which the donor's kidney is incompatible with the intended recipient. So that donor gives a kidney to another patient in need, starting a chain that ends when the person originally identified as the recipient of the first donor's kidney finally receives a kidney transplant. The Alliance for Paired Donation, which works with 80 transplant centers across the country, has started 19 kidney chains, says executive director Laurie Reece. One hundred transplant centers have signed up to participate in the national Kidney Paired Donation Pilot Program, which is being run by the Organ Procurement and Transplantation Network. OPTN hopes to use the pilot program, in which 18 transplants have occurred to date, as the basis of a new national policy. OPTN is scheduling public hearings on the plan within the next couple of months. The OPTN's board of directors will then vote in November. If the board approves the policy, it will go into effect in February 2013. Hendrix wasn't so sure. "There was definitely a lot of, 'What's going on?' and 'Are they really gonna blow me off? Are they gonna take me seriously?' going through my mind," he said. The Clinic did take him seriously. Two days later, Audrey Caplin, called. Caplin, a nurse, is one of two people at the Clinic who coordinate what are termed living kidney donations. For about 20 minutes, the two talked about Hendrix's general medical history. Caplin wanted to make sure there were no red flags -- active cancer, heart disease or diabetes, a family history of kidney disease -- that would disqualify Hendrix immediately. Caplin also asked Hendrix what his family thought about his plan to give one of his kidneys to a stranger. He assured her they were supportive. She provided him with a general idea of the donor process. "It was nerve-racking, definitely," he said. "I'm not sure why. It was really uncomfortable." The unease came, in part, from the degree of inquiry. "We ask all kinds of questions," Caplin said later. "We educate them. That's part of our process." Caplin also mailed Hendrix an information packet. Three weeks later, Hendrix called her back; he hadn't changed his mind. On Aug. 18, Hendrix went to the Clinic and met Caplin for the first time. They talked for about an hour, going over what he could expect as the process moved forward. Hendrix then talked with social worker Cheryl Gillespie. It was as if he were telling her his entire life story, he said -¬what his childhood was like, what was going on in his life right now. The final conversation that day was with a psychiatrist. Dr. Kathy Coffman conducted some basic psychiatric tests and quizzed Hendrix on his memory recollection and association. Because Hendrix had called the Clinic to offer his kidney to whoever needed it, his meeting with a psychiatrist came early in the screening process. Most people don't meet with a psychiatrist until after they are approved as a potential donor, with the session coming as part of two days of medical tests and consultations. The following week, a committee convened to review all of the details of Hendrix's case -- the only one that didn't have an identified recipient -- and those of other potential kidney donors. From eight to 12 people, including surgeons, kidney specialists, social workers, bioethicists, an independent donor advocate, nurses and the living-donor coordinator, attend these weekly meetings, which can last up to 90 minutes. The committee approved Hendrix as a potential kidney donor. Caplin called to tell him the good news. In any given year, the Clinic -- like other transplant centers -- fields hundreds of calls from people who want to donate a kidney to someone they don't know. "Maybe 20 [of those calls] are serious. Ten are thoroughly evaluated and go through the process completely. And just a rare few wind up completing," said Dr. Stuart Flechner, a Clinic transplant surgeon. Health issues disqualify many people. Others back out when they realize that they don't get paid for donating (it's against the law) or that the surgery doesn't come with a same-day recovery. Although the operation is usually performed laparoscopically with minimal incisions, it can take three to four hours, is performed under general anesthesia and is followed by a few nights in the hospital. "People really don't have a clue about what it means to be a patient and to have surgery," Flechner said. "They haven't thought it through." Of the 48 living kidney donors who had surgery at the Clinic in 2011, only two -- including Hendrix -- did not know who the recipient would be. Seven patients at the

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Clinic have received a kidney from anonymous living kidney donors since 2003. 'We are very cautious' about donors under 25 As part of a battery of medical tests that Hendrix had to complete to be cleared to donate, he had to collect urine samples over 24 hours. That proved a challenge for the fourth-year computer engineering student at the University of Akron. How rare are anonymous donors Of the 4,731 people who were living donors in the United States from January through November 2011, only 142 donated anonymously, according to data provided by United Network for Organ Sharing. About half of 170 hospitals that have performed kidney transplants have used anonymous living donors three times or fewer. Of the more than 110,000 living donors in the United States from 1988 through November 2011, about 1 percent -¬1,136 -- have been anonymous. "I was carrying a cooler around campus," he said. "I had to keep [the sample containers] refrigerated." On Sept. 13, cooler in hand, Hendrix showed up for what would be nine hours of further testing at the Clinic. First up -- a blood test to check Hendrix's glomerular filtration rate, or GFR, to see how well his kidneys were functioning. That was followed by an EKG, chest X-ray, CT scan and the start of 24-hour blood pressure monitoring. All of this was to rule out diabetes, high blood pressure and heart disease. Also that day, for the first time, Hendrix met with Flechner, the man who would perform the surgery. "There were two big issues about him," Flechner recalled. "One was his age; he was extremely young. Is he mature? Two, being altruistic, what is really the motive?" At 21, Hendrix was past the legal age of informed consent, 18. That doesn't mean much, though, in the process of vetting potential donor candidates. "We are very cautious about those, let's say, under 25," Flechner said. "The reason is twofold. One, are they adult enough? Are they making decisions and choices that they wouldn't regret later? And two, the younger you are when you donate, the more life years you have to have something to go wrong. We want to make sure that really young folks are super-clean, medically. . . . It's more delicate." In early October, Hendrix skipped classes to go back to the Clinic for meetings with a kidney specialist, Dr. Brian Stephany, and a bioethicist. People who say they want to donate to someone they don't know automatically meet with a bioethicist. They're not the only ones. Anyone whose relationship with a potential recipient raises a flag -- an employee donating to his boss, a tenant offering a kidney to her landlord -- receives extra scrutiny, Caplin said. "It's protection for the donor," said Caplin, adding that potential donors are advised throughout the process -- up until they are wheeled into the operating room -- that they can back out of surgery at any time. The following week, the bioethicist called Hendrix with the results of the medical tests and evaluations. Everything looked good. Again Hendrix heard the words, "We'll call you." On Oct. 20, Hendrix's case was once again presented at the kidney donor selection committee. Based on the test results and evaluations, Hendrix was approved as a kidney donor candidate. Four months had passed since his dream. The Clinic called Hendrix that day to schedule a date for surgery. During his first conversation with the Clinic, Hendrix stated when he wanted to have the operation. "The only request he had -- and he was quite gentle and low-key in expressing it -- he had this window of finishing his finals and being off for three weeks," Flechner said. "He asked me twice, in the most humble way, could it happen in that interval." The Clinic, Flechner said, pushed for the National Kidney Registry in New York to accommodate Hendrix's class schedule. "That usually doesn't happen but we really went overboard to make it user-friendly for Curtis," Flechner said. The Clinic had worked with the registry, a nonprofit organization that specializes in coordinating paired exchange transplants, for only a few months. "We're very enthusiastic about them," Flechner said. The registry also develops sequences of donor-recipient pairs, in which the donor's kidney can't go to a planned recipient for medical reasons. Hendrix's kidney started a chain reaction that will end with a kidney going to a recipient at the Clinic. The chain could theoretically involve 12 transplants, Flechner said. After one potential recipient fell through because the match wasn't favorable, in late November the National Kidney Registry identified another potential patient. Once blood test and tissue typing results from a patient in California came back favorable, the Clinic notified Hendrix he was a match. Following Hendrix's wishes, the surgery was scheduled to take place 10 days later. As with all kidney transplants, all costs related to Hendrix's surgery and recovery (as well as his pre-surgery medical evaluations) would be picked up by the recipient's health insurance. On Dec. 12, during his winter break from classes -- one week after taking his last final of the semester and about a month before starting a five-month engineering co-op at the Minerva, Ohio, operation of PCC Airfoils -- Hendrix would give away his left kidney. Following the two-hour, 40-minute surgery, which had begun at 8 a.m., Hendrix's kidney was put on a charter plane to Chicago. From there it was flown to San Francisco, then on to Sacramento, where it was taken by ambulance to the hospital at the University of California-Davis. At 7:40 p.m. Pacific time, the kidney arrived at the hospital. For the next few hours, the organ was evaluated by the surgeon. The fat that

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surrounds and protects the kidney was removed. The ureter (the tube that carries urine from the kidney to the bladder), artery and vein also were prepared before the transplant. At 11:13 p.m., Dr. Richard Perez, a professor of surgery and director of the kidney transplant program at the UC-Davis in Sacramento, began the surgery and finished 21 hours and 40 minutes after Hendrix's surgery began in Cleveland. After three nights in the hospital, Hendrix went home. For the next few days after that he didn't do much more than sleep and lie around in bed. Once he felt a little stronger, he hung out with family and friends but pretty much took advantage of his vacation to recuperate at home. Two days after Hendrix was discharged, the California man also went home with his new kidney. Hendrix returned to the Clinic Jan. 3 for a follow-up visit with Flechner, who checked that the incisions were healing correctly. Hendrix's six-month follow-up will be sometime in June. After that, as is required by UNOS, he will come back for a one-year and two-year follow-up, the cost of which will be covered in full through the Clinic's Donor WIn (Wellness INitiative) program, designed to meet the post-surgery health needs of living kidney donors. Because he is young and healthy, Hendrix's remaining kidney will grow big enough to provide his body with about 70 percent kidney function, Flechner said. That's fine with Hendrix. "If everything goes well, there are pretty much no changes in your health," he said. "I look at it [as], what if the roles were reversed? If I were stuck on dialysis with no kidney function left, I would want somebody to give me a kidney. I'm extremely healthy. This is something that I could do." In-center Hemodialysis Revisited: The American Endotoxin Debacle « on: February 12, 2012, 11:47:21 PM » Sunday, February 05, 2012 In-center Hemodialysis Revisited: The American Endotoxin Debacle By Peter Laird, MD My delight of the many benefits of Kaiser compared to other health care providers I have dealt with since beginning hemodialysis is at times tempered by Kaiser's idiosyncrasies brought about by their large bureaucratic approach to even simple tasks. One such instance is with with iron infusions. My only two choices are to go to an infusion center where they treat patients with severe resistent bacteria with IV antibiotics. Sadly, some of my closest and favorite nurses at Kaiser work in our infusion clinic and I have not been able to see them due in part to their own insistance that I stay away from their workplace for this reason alone. My only other option is to go back in-center for an infusion of iron while on dialysis. Here again, I am faced with more obstacles. The local unit utilizes Venofer, an iron preparation that I would most likely have to have several infusions to correct a low iron count in the space of several months. While this unit is close, I prefer to go to my home dialysis unit in the middle of LA nearly an hour and half away to get one infusion that usually lasts me up to a year before I need another dosage. This was my way of celebrating my five years of dialysis on February 1, 2012 with one more round of in-center hemodialysis. As in many difficulties in our lives, the further we get away from those episodes in months and sometimes years, the memory fades on why we hated those particular experiences. I got a full dosage of in-center hemodialysis to remind me of why I am so happy to be at home. I did three hours of dialysis at a blood flow rate of 350 ml/min, my usual home dialysis blood flow rate. My iron infusion went well with no complications. However, immediately after leaving the dialysis unit, the old sensations of "butterflies" in my stomach returned. I never experience any significant symptoms with my home dialysis regimen. Recovery time is essentially negligible if any at all. Many days, I remove the needles, stop the bleeding and immediately go to church or other activities with my wife and family and feel well. This day on the precise anniversary of beginning dialysis, I experienced a rather severe, for me anyway, and difficult recovery. The ubiquitous dialysis headaches I have hated so much in the past came roaring back. It certainly wasn't the worst post-dialysis headache I have ever experienced, but it's presence certainly was univited and surprising since I had forgotten the sensation but on the rarest of occasions with home dialysis. I experience several symptoms associated with dialysis disequilibrium syndrome including reduced attention, fatigue and the abdominal sensation which is most similar to the type of butterflies experienced speaking before a crowd from nervousness. I truly did not recover from this dialysis session for nearly two days. The question that begs an answer is why would I experience such severe differences in post dialysis recovery times from in-cente dialysis and my home treatments? Although I am left to speculation, there is one possible explanation that the American dialysis industry has failed to address adequately compared to Europe and other nations, that of the total allowable endotoxin levels in dialysate. Endotoxins are chemically active break down products of bacteria cell walls. Even after bacteria are killed during preparation of dialysate fluids, the cell walls are still present. Endotoxins are responsible for many of the symptoms

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and physiologic changes seen in septic patients by promoting a complex set of inflammatory reactions. Dialysis patients are likewise subjected to damaging inflammation that is a known marker of worse outcomes. One strategy to reduce inflammation is to use ultra-pure dialysate: Ultrapure dialysate reduces plasma levels of beta2-microglobulin and pentosidine in hemodialysis patients RESULTS: The switch from conventional to ultrapure dialysate significantly decreased plasma levels of beta2MG, from 30.1 +/- 1.4 to 27.1 +/- 1.4 mg/dl (p < 0.05) and pentosidine, from 1,535.8 +/- 107.5 to 1,267.6 +/- 102.9 nmol/l (p < 0.01) after 1 month of use. The change of dialysate also significantly decreased plasma levels of CRP, from 0.28 +/- 0.09 to 0.14 +/- 0.05 mg/dl (p < 0.05) and IL-6, from 9.4 +/- 2.7 to 3.5 +/- 0.8 pg/ml (p < 0.01) over the 1-month period. These changes in plasma levels of beta2MG, pentosidine, CRP and IL-6 were maintained over 6 months after switching to ultrapure dialysate and returned to basal levels by switching back to a conventional dialysate. CONCLUSIONS: Ultrapure dialysate decreases plasma levels of beta2MG, pentosidine and inflammatory markers in hemodialysis patients. The use of ultrapure dialysate might be useful in preventing and/or treating complications of dialysis, such as dialysis-related amyloidosis, atherosclerosis and malnutrition. It is time for America to address endotoxin levels and embrace ultrapure dialysate especially in the home dialysis setting. NxStage Medical utilizes ultrapure dialysate in their Pureflow process. With essentially identical blood flow rates and estimated clearances with a three hour conventional session vs my four hour home sessions, endotoxins in my opinion are the most likely culprit. Endotoxins are just one of many largely ignored issues of hemodialysis in America that could dramatically improve patients quality of life and survival. My latest reminder of conventional dialysis is just one more example of the need for addressing the deficiencies of this procedure in the same systematic fashion that all medical procedures have evolved through constant improvements in the last thirty years. Instead, dialysis in America remains stagnated in failure to act upon known clinical dangers and side effects with know alternatives that would eliminate these issues completely. I won't look any time soon to my next inevitable encounter with conventional dialysis when my iron levels are once again low. Sadly, every day this is the clinical experience of hundreds of thousands of American dialysis patients. In a few hours, the clinic doors will open one more time,a nd patients will enter feeling better than when they leave. That in itself should engage the American nephrology community to at least address these issues. Sadly, it is unlikely that many nephrologists will even see their patients with the minimal level of oversight mandated by regulations. The only people who will know about this are the patients themselves as they hobble out of their chairs in a red eye shuffle that could have been prevented. I would hope that the American nephrologist never experiences this in their own lives, but it might be the only way to wake their colleagues up to the need for improvement. Maybe someday indeed. http://www.hemodoc.com/2012/02/in-center-hemodialysis-revisited-the-american-endotoxin-debacle.html? utm_source=dlvr.it&utm_medium=twitter Stranger donates kidney to Ga. musician « on: February 12, 2012, 03:21:05 PM » Stranger donates kidney to Ga. musician ATLANTA — An Atlanta Blues musician who was in need of a new kidney said he owes his life to a complete stranger. Now, his wife is repaying the deed by donating her kidney to someone else in need. Breeze Kings front man Carlos Capote has been dealing with kidney failure for the last several years. He said he never felt good and had no energy. “You just realize that I am always at 75 percent power at best,” Capote told Channel 2’s Diana Davis. He needed a kidney transplant, but there were no suitable matches. He said it could have been several more years before he reached the top of the waiting list, but thanks to complete stranger, it was much less. “I just felt it was the right thing to do to help someone else out,” donor Carolyn Connor told Davis. She originally wanted to donate a kidney to a friend. When that transplant didn’t work, she stayed on the list and became a donor to Capote. “It’s overwhelming. There no other word for it,” he said. His wife, Terri, called it a selfless act. “She had no reason to do it other than she’s an angel,” Terri Capote said. Through tears, Connor said kidney donation is something she wishes more people would consider. “If you care about people and the other people around you, then you should try to help,” Connor said. She inspired Capote’s wife to pay Connor’s gift forward. Next week, she will give her kidney to another patient on the

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list. “We’re all connected. We’re all family,” Terri Capote said. Ten years ago, so-called paired transplants were rare, but Piedmont Hospital officials said many of its live donor transplants are now done that way. “It makes a significant impact, because there's just basically no waiting time once you have a living donor,” Dr. Miguel Tan Just four days after Capote’s transplant, the couple said the difference in his health is stunning. “Night and day, emotional, mental and physical,” Capote said. Because neither of the Capotes will be able to work for a while after the transplants, a fundraiser is set for Sunday to help them cover expenses. The event will be held at Blind Wille’s Blues Club at 5 p.m. If you would to make an online donation to the Capote family, click here. http://www.wsbtv.com/news/news/local/stranger-donates-kidney-ga-musician/nHWt4/ 'I donated a kidney... I now know what my patients go through' « on: February 12, 2012, 03:10:04 PM » 'I donated a kidney... I now know what my patients go through': The remarkable story of a top transplant expert By BONNIE ESTRIDGE Last updated at 10:44 PM on 11th February 2012 Recovering in his hospital bed having just undergone surgery to donate one of his kidneys, Dr John Scoble confessed to feeling ‘a little sore’. As a consultant nephrologist and transplant expert at London’s Guy’s and St Thomas’ NHS Foundation Trust, he had advised patients on the exact same procedure for decades. But two years ago, by an extraordinary twist of fate, John discovered just how it felt to be a patient when he became a donor to his 66-year-old cousin, Derek Scoble. John says: ‘Intellectually, I knew what would happen, but emotionally the experience changed my perspective completely. Becoming a donor was an amalgam of all the things I had heard from my patients. I now know the hope, the fear, the disappointment when there are setbacks, as there were in our case – and the ultimate joy that comes when the transplant is a success.’ Derek Scoble and his cousin and donor, Dr John Scoble John, 57, and Derek were born in Plymouth. Their fathers – both now deceased – were brothers but John says that because of the age gap between them, he and Derek did not have a strong bond as children. However, 15 years ago, Derek contacted his cousin because he wanted to ask him about a condition he had just been diagnosed with – nephrotic syndrome, which causes the kidneys to fail. This can occur in patients who have diabetes, infections such as hepatitis, immune disorders and cancer, and it can affect all age groups. The most common symptom is swelling, particularly in the arms and legs, and also in the abdomen. John says: ‘Nephrotic syndrome is a progressive disease of the kidneys, which normally filter toxins from the blood. In his case it was idiopathic – in other words, the reason that Derek had it was unknown. ‘Donors must be in very good overall physical health and have a healthy organ if the transplant is to work. Having spent 20 years working with living donors, I know that problems can be encountered, often late in the process,’ said John. ‘It can be controlled with drugs for some years but over time kidney function diminishes, meaning that at some point a transplant is needed. I told Derek that as I was blood group O, the universal blood group, I would be happy to give one of my kidneys to him when the time came that he needed a donor.’ In 1998 Derek’s condition was stable, enabling him to stay fit enough in his job as a fireman. But his kidneys failed 11 years later, and it was then he contacted John to ask him if his offer still stood – which it did. John, who lives in Wimbledon, South-West London, says: ‘As it turned out, Derek’s wife Janis had also offered to donate. She was 62 and had no medical problems that we knew about. I have to admit that the thought “I’m off the hook .??.??.” did go through my head.’ Before becoming eligible, a potential donor goes through a rigorous series of assessments. This includes scans of the kidney and the arteries surrounding it, blood tests to assess how well the organ is working, and tests to show up any underlying problems such as heart disease. John says: ‘Donors must be in very good overall physical health and have a healthy organ if the transplant is to work. Having spent 20 years working with living donors, I know that problems can be encountered, often late in the process.’ Unfortunately, this scenario is exactly what happened – a CT scan showed that Janis’s kidneys were scarred, ruling her out of the operation. ‘This scarring had no effect on Janis but we transplant only perfect kidneys,’ explains John. Dr Scoble feels he is able to prepare his patients better now that he has been through the surgery himself Derek continues: ‘Janis was devastated but no one would want to risk giving a scarred kidney to someone who already has kidney disease. ‘John and I talked extensively about the transplant and we were both confident in the team at Guy’s. They have a worldwide reputation of excellence – the fact that John was putting himself in their hands said it all. ‘But it must

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have been difficult for him because he knew only too well from his patients just what being a donor involves. As he says, we can function perfectly with one kidney but living donation is the only procedure in which a fit person goes into surgery in an operation that has no benefit for themselves.’ John admits the thought of surgery left him a little anxious. ‘I’d not had an operation since my appendix was removed when I was 12. Sometimes I would wake up in the night thinking, “I don’t want to do this.” I was worried I wouldn’t be fit enough.’ John returned to work after four weeks, which is typical for a fit donor. But for Derek, it was 18 months before he felt well enough to enjoy his favourite pastime – golf But by the day of the surgery – March 26, 2010 – neither donor nor recipient was particularly concerned about what lay ahead. John’s kidney was removed under general anaesthetic using keyhole surgical techniques. Derek was given the transplant via traditional open surgery, in which his damaged kidney was removed and the donor organ attached in its place. ‘I came round on the ward after five hours feeling a little sore, but otherwise well,’ recalls John. ‘However, I realised that no one had come to tell me that Derek was OK and a deep feeling of dread crept over me.’ In fact, Derek was still in theatre. While the procedure should have taken about four hours, he ended up in intensive care after 12 hours of surgery because one of the arteries to the kidney had developed blockages caused by blood clots. ‘When I came round two days later I didn’t feel too good,’ says Derek. ‘I was in intensive care for two weeks and I spent a total of eight weeks in hospital when it should have been five to ten days.’ John returned to work after four weeks, which is typical for a fit donor. But for Derek, it was 18 months before he felt well enough to enjoy his favourite pastime – golf. ‘It was touch-and-go for a while but now I feel absolutely terrific,’ he says. ‘I will never be able to thank John enough for what he did for me.’ John adds: ‘All my donors are told when I make my assessment that there is a two per cent chance that their donated kidney could fail in the first month of transplantation. ‘Many respond “But it won’t fail”, and to this I now tell them that although my kidney eventually thrived in Derek, it came so close to being part of that failure rate. ‘I was devastated and, like many donors I see, I told myself it wasn’t going to happen to me. ‘So now I can tell people that if I can become close to failing, it can fail for anyone else. ‘It’s a huge decision to donate a kidney and having done so myself I think I can prepare patients better for the rollercoaster ride it can be.’ lFor information about how to become a living donor, visit http://bit.ly/fwrpIt. Read more: http://www.dailymail.co.uk/health/article-2099831/I-donated-kidney--I-know-patients-The-remarkable-story-transplant-expert.html#ixzz1mCTP9rUB Caring husband gives up kidney to get wife a transplant! « on: February 12, 2012, 03:06:20 PM » Caring husband gives up kidney to get wife a transplant! Published on Sunday 12 February 2012 10:20 WATCHING his wife anxiously wait for a kidney transplant convinced Michael Williams to volunteer for a pioneering scheme. Michael (55) decided to become a ‘living donor’ to help wife Susan – signing up for a kidney swap. He told the Herald: “Susan was diagnosed with kidney disease nearly 20 years ago and started having dialysis about five years ago. “It took five hours a night, three times a week. It completely took over our lives. “I was trained how to do it and we had the equipment put in our garden shed. We would both be working 12 hour days then coming home to sit in the shed for five hours. Basically it felt like we were both on the machine.” Susan was placed on the organ transplant waiting list, but Michael decided that he could not wait for a suitable kidney to become available. He said: “I was tested, but my kidney wasn’t a match. “However, I convinced the doctors to put me on the pairing system in March last year. It means you can ‘swap’ kidneys with other people who are a match for your loved one. “We got a match straight away, so my kidney went to Northern Ireland, a kidney came from Northern Ireland to Bristol and then a kidney from Bristol was given to Susan. There were helicopters and motorbikes travelling all across the UK with the kidneys to carry out the three transplants” The operations, at Glasgow’s Western Infirmary on July 22 last year, were a complete success and six months on both were able to return to work. Michael said: “It’s made a 100 per cent difference to our lives.” In recent weeks the Herald has been running a campaign to get readers to sign up to the Organ Donor Register ¬ allowing their organs and tissue to be used to save lives in the event of their death.

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Tragically, only around 30 per cent of people are currently signed up, meaning those needing a vital transplant operation can be left waiting for years. Signing up for the register is easy - just go to www.organdonation.nhs.uk, call 0300 1232323, or text ‘SAVE’ to 84118. * Have you got a comment or a story? E-mail kirkyherald@jnscotland.co.uk http://www.kirkintilloch-herald.co.uk/news/local-headlines/caring_husband_gives_up_kidney_to_get_wife_a_transplant_1_2103845 How to Be a Better Boss? Spend Time on the Front Lines « on: February 12, 2012, 02:55:11 PM » How to Be a Better Boss? Spend Time on the Front Lines By JOANN S. LUBLIN To succeed in upper management, consider walking in the shoes of your lower-level workers. Scott Moorehead, Carolyn Kibler and Don Fertman did exactly that at different stages of their careers. They gleaned potent insights that made them more effective leaders and authentic communicators. Such lessons could hasten your advancement, too. Facing increased turnover during the recovery, businesses have resumed grooming executives with such skills, leadership experts say. When Mr. Moorehead finished college and joined his family's business Moorehead Communications Inc. in 2001, his parents forced him to spend a year working briefly in nearly every job–including delivery-truck driver. Holding 32 positions for a half a day to three weeks per job "made me a very employee-centric CEO,'' says Mr. Moorehead, who took command in 2008. The company, which does business as the Cellular Connection, became the biggest U.S. dealer for Verizon Wireless phones and services in 2010. DaVita Division Vice President Carolyn Kibler visits a company clinic in Atlanta. Ms. Kibler moved up at DaVita Inc., the nation's No. 2 dialysis-treatment operator, after she toiled alongside dialysis technicians for three days in 2007 as part of its Reality 101 immersion program. Now an operational vice president, she oversees twice as many divisions and staffers as five years ago. DaVita is among the handful of firms that require key officials to do front-line stints so they can stay in closer touch with their troops. Under an expanded version of Reality 101 launched this month (Feb.), middle managers and executives must also shadow employees in other roles such as dietitian and social worker for at least one day a year. Don Fertman, chief development officer of Subway Restaurants, appeared on CBS's "Undercover Boss'' reality TV show in 2010, donning a pseudonym and beard to be a "sandwich artist" for a week. He was so clueless about sandwich making that he mistakenly believed he had locked himself in a walk-in freezer. Subway executive Don Fertman spent time as a sandwich maker in one of his company's restaurants for the CBS TV show "Undercover Boss." Mr. Fertman says he gained a ground-level perspective about customer service that will help the world's biggest restaurant chain exceed its 2016 goal of 45,000 stores. For instance, he says he has proposed putting sandwich artists at the top of Subway's organizational chart because they "ultimately determine our success." All three executives recognize that "the front-line employee represents a different world,'' notes L. Todd Thomas, an associate professor at Northwood University's management school. Yet other executives frequently ignore workers' unique contributions, cavalierly calling them "our greatest asset,'' he notes, adding: "Assets depreciate over time.'' For Ms. Kibler, the stressful dialysis duty sharpened her awareness that even minor management decisions affect patient caregivers. "I truly understand the challenges our front-line teams face every day,'' she explains. "It's like a layer of my skin.'' One of Ms. Kibler's operational managers recently proposed using dialysis staffers differently in order to improve clinic efficiency. She says she realized the change would make facility administrators feel they needed to get the same work done with less support. She asked the lieutenant to revamp his proposal and pay closer attention to its impact on administrators, who often care for patients, too. Ms. Kibler took similar steps right after her immersion experience. She became more lenient when clinics fell behind on paperwork due to staffing shortages. And she tried to plan better so last-minute deadlines wouldn't distract administrators and technicians.

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During his year-long tryout rotation, Mr. Moorehead learned the importance of employee feedback for the top brass. One assignment landed him in the "returns" department, shipping damaged cell phones to manufacturers. When the owners' son arrived, recalls Jackee Eib, a veteran returns employee, staffers "didn't think he would do the work." Scott Moorehead, chief executive of The Cellular Connection, says a stint on his company's sales floors led him to change policies on worker pay. Those workers toiled in a small warehouse crowded with 30 bins. "None of the higher-ups realized it, but the employees were miserable in the tiny space'' and it quickly grew disorganized, Mr. Moorehead remembers. He persuaded his mother to knock out a wall to expand the space—a move that made operations more efficient. More significantly, he saw firsthand how the wide pay discrepancy between salespeople and store managers led to worker resentment and high turnover. When he took on the top job, he changed pay for the sales staff, a decision that immediately reduced staff turnover. As Mr. Moorehead advanced, he created channels for frank feedback. One was Voice It, an internal website link created in 2006. Employees willing to identify themselves aired complaints online and received monthly responses from executives. But "there were a lot of petty gripes,'' such as store staffers who disliked limits on wearing jeans, Mr. Moorehead recollects. In late 2008, the company removed Voice It. The chief executive says he didn't recognize that was the wrong call until he tried another experiment in empathetic leadership. Before a management retreat last fall, he asked 86 participants to pretend they wore his shoes for the rest of 2011 – and write memos describing how the ersatz CEO would improve the company. Sixteen managers lamented the loss of a "family feeling" at the fast-growing company—feedback that hurt and humbled Mr. Moorehead. "I had become disconnected from my front-line employees, especially the new ones,'' he admits. He soon restored Voice It and started an employee newsletter. Subway's Mr. Fertman devised different tactics to reinforce lessons from his sandwich artist days. He persuaded the rest of senior management to also spend a week in the role – and consider making the mandate an annual assignment. Mr. Fertman gained additional insights by conducting a dozen focus groups with sandwich artists. When he again dons an artist's apron for a week this year, he expects to be keenly aware that "they want to feel good about what they are doing for a living.'' Write to Joann S. Lublin at joann.lublin@wsj.com http://online.wsj.com/article/SB10001424052970203824904577212951446826014.html Nothing says 'I love you' like a kidney « on: February 12, 2012, 02:53:02 PM » Nothing says 'I love you' like a kidney Woman gives kidney to her husband By Kim Lamb Gregory Posted February 11, 2012 at 3 p.m. Antoinette and Alex Grassi have been married 44 years and have known each other since they were 13 and 15 and growing up in the same Bronx neighborhood in New York. They display a 1965 high school prom photo. In January, Antoinette gave Alex a kidney. With Bronx accents as thick as the mozzarella cheese their moms used to buy in Little Italy, Alex and Antoinette Grassi recalled the Valentine's Days the two spent growing up across the street from each other in the New York neighborhood. "I would come to her house and she's looking out the window to see what I got her," Alex, 66, said. "It's my favorite holiday," said Antoinette, 64. But all the candy hearts in the world couldn't equal the gift Antoinette gave Alex this January when she helped save his life by giving him one of her kidneys. "I told him he already has my heart," she said. "Now he can have my kidney." The Thousand Oaks couple will mark 45 years of marriage this April. "I'm so proud of her," Alex said, tears flooding his eyes. "I'm sorry I had to take it (the kidney)." Alex blinked, looked away, then strode into the kitchen. "You want some coffee?" He pulled strawberries out of the refrigerator and began slicing them. "He's always feeding you," Antoinette said with a smile. The Grassis have called Thousand Oaks home since 1980, after they came to California on vacation, fell in love with it, and moved out here with their two children.

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It was the second half of a love story that began in a cluster of apartment buildings between two train tracks in the Bronx. "We grew up between two trains that we never heard," said Antoinette's sister, Nicolette Cicatelli, 58, of Thousand Oaks. "People would say, how can you live around that noise?" Antoinette was one of four kids, Alex was the youngest of three. They were born in the same hospital, and had all the same friends. "It was 'Who's playing stickball, who's jumping rope? Who's roller skating?" Cicatelli said. "Everybody had three to five kids." Antoinette's dad was a milkman and Alex's dad was a barber. Alex became a hairdresser and eventually ran several salons. "He was the cutie hairdresser," Antoinette said. A smitten Antoinette used to try to get Alex's attention in ways only a teenager can dream up. "'Googy' was his nickname," Cicatelli said. "Sometimes he would play pool and she would say 'Call and ask if Googy's there. I'd call Scotty's Pool Hall and say 'Is Googy there?" and he'd come to the phone and she'd have me hang up." PHOTO BY CHUCK KIRMAN, VENTURA COUNTY STAR A copy photo shows Antoinette and Alex Grassi on their wedding day 44 years ago. Alex played it cool, tossing a pan of water on Antoinette's friends, who would chant "Antoinette likes you" underneath his window. "He was such a noodge," Antoinette joked. "That means I was a pain in the a--," Alex said. They had their first date at the movies when she was 13 and he was 15. They were hooked. On prom night, Antoinette donned a yellow gown, borrowed a mink stole and let Alex do her hair into a double-decker bubble hairdo. "Prom night was fabulous. It was in Manhattan. We went to Mama Leone's and took the Staten Island Ferry ride," Antoinette said. Alex dropped down to one knee in front of both families on Christmas Eve of 1966 and they were married in 1967, about six years after their first date. The couple moved to Westchester, N.Y., where he opened a shoe business. Eight years later, Kim was born, followed five years later by Andy. In the early 1980s, the Grassis moved to Thousand Oaks where Alex eventually opened a pool business and Antoinette found work as an administrative assistant at the Cardon Conejo School, a private school in Westlake Village. The marriage worked, and was anything but dull. "One minute they're at each other and arguing and the next minute they're hugging and kissing each other," Cicatelli said. "They're like Gracie Allen and George Burns." Then, eight years ago, Antoinette pestered Alex to go to the doctor because he was weak and didn't look right. He had always had difficulty with his kidneys, which had suffered a viral attack years ago, the couple said, but was managed with medication. Alex was diagnosed with prostate cancer. Surgeons removed his prostate, but soon after, Alex's kidneys declined. He was bewildered. "I was never sick in my life," Alex said. In August of 2011, Alex went on four hours of dialysis three times a week at UCLA Medical Center, He said doctors told him it would be about eight years before a kidney became available, but they would put him on a kidney registry. His daughter and son were willing donors, but Kim had just been pregnant and Alex didn't want to leave his son with one kidney. Antoinette volunteered but another transplant center told her she was too old, she said, but UCLA Medical Center said they could perform the transplant up to age 65. Both had the same blood type and were a good cross match. "A cross match is where we mix the donor cells with the recipient cells," explained registered nurse Tonya Frazier, Living Donor kidney transplant coordinator with UCLA Health System's Kidney and Pancreas Transplant Program. If the donor cells react with the recipient cells, there is a greater chance of rejection, she explained. Years ago, spouse-to-spouse transplants were not possible she said, but with advances in anti-rejection drugs, spouses don't have to be a perfect match in order for the transplant to work. "In the olden days, the donor and recipient had to be identical twins almost," Frazier said. Antoinette had no reservations about donating a kidney. In fact, she thanked God she was enough of a match to make

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the donation. PHOTO BY CHUCK KIRMAN, VENTURA COUNTY STAR Antoinette and Alex Grassi have been married 44 years and known each other since they were teenagers and growing up in the same Bronx neighborhood. In January. Antoinette gave Alex a kidney. "She said to me, 'What am I supposed to do? Let him die?'" Cicatelli said. "When she said that, my heart sank to my stomach. It's true. She's been with him all her life. I said to myself, she loves him. She truly loves him." Cicatelli moved to Thousand Oaks to care for her sister and Alex after their Jan. 3 transplant operation. Antoinette said she was warned that the operation was hardest on the donor, but she was willing to do anything it took. After the operation, the two were kept in opposite wings, which is customary, Frazier said, so the donor can make pressure-free decisions. "It's like a protection for the donor," Frazier explained. "We have seen situations where the donor has been coerced by the family to donate." Antoinette was lying in her hospital bed when Alex's nurse showed up at her door. "She said 'I'm your husband's nurse and I'm off duty, but he wants to tell you he loves you," Antoinette remembered. "Then she starts blowing me kisses." Antoinette then struggled to her feet, and wheeled herself and her intravenous drip pole down to the other wing to see Alex. Cicatelli cared for the two, which was an easy job, she said, as Antoinette's co-workers from Cardon Conejo showed up with food every night for two weeks, as well as dozens of gifts and flowers. Antoinette is now back at work and Alex is up and around and feeling much better. For Christmas, he showed his appreciation by surprising her with a BMW to replace her 1995 Honda Accord. "I wanted to treat her to something special," Alex said. "She's my hero." Frazier was touched by the Grassis' devotion, referring to Antoinette as "my VIP patient, which I don't do very often," she said. Frazier said the staff at the transplant center have heard couples report an improved relationship after a spouse-to¬spouse donation. "It's a cardinal sign of love," she said. "It's a gift. It's a true gift." Read more: http://www.vcstar.com/news/2012/feb/11/nothing-says-i-love-you-like-a-kidney/#ixzz1mCP41aFJ Against the odds: A lengthy ‘daisy chain’ transplant benefits elderly « on: February 12, 2012, 02:39:45 PM » Against the odds: A lengthy ‘daisy chain’ transplant benefits elderly Posted on 12:01 am, Saturday, February 11, 2012. Special to Hawaii 24/7 At age 80, receiving a kidney transplant was nearly out of the question for Honolulu resident Henry Tai. Most program requirements place limits on age (e.g. the person must be a certain age to enter the waiting list). Though much research has been done and many studies suggest that age alone should not be a factor, dialysis patients over the age of 65 experience many obstacles when trying to receive a transplant. Hoping to enhance the quality of her father’s life, Cynthia Tai left The Hague and began the process of being a living donor in San Francisco. Unfortunately, though matched genetically, their tissue type did not match up, and Cynthia was deemed not a suitable donor for her father. Although the traditional route of organ transplant did not seem accessible for Henry, rather than being discouraged, the family sought an alternative solution. They opted to proceed with testing in the hopes that a matched donor could be found. In March 2009, the New England Journal of Medicine, reported an extraordinary set of kidney transplants made possible by donors who gave their kidneys to people they did not know. Dubbed, the “NEAD (nonsimultaneous, extended, altruistic donor) chain” or “daisy chain” transplant, organizations help link potential donors with recipients around the world. It all begins with a kidney from an altruistic donor that is a possible transplantable match to a patient who has a relative or friend willing to donate but whose kidney is not compatible by blood or tissue type. Once the altruistic donor kidney is matched up and transplanted, the kidney from the willing donor from the original incompatible pair goes on to assist another incompatible donor-recipient pair and so on. Through this route, Cynthia was able to donate her kidney to a donor-recipient pair, who then donated to another pair, and then eventually it led back to her father receiving a kidney from another donor-recipient pair. Procedures such as these are carefully orchestrated with donors and recipients in various locations and coordinated to preserve the integrity of the kidneys. This particular chain facilitated 12 transplants at seven medical centers across the country. On Feb. 18, 2010, Henry received his kidney at the University of California, San

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Francisco Medical Center, the day it was removed from a woman at the University Medical Center of Southern Nevada. In a nearby operating room, at virtually the same time, a single mom with two children in California was the benefactor of Cynthia’s kidney. Though the recovery rate is one to two months post-operation, Cynthia was back online and continuing her work as a trial lawyer with the International Criminal Court in The Hague just days after the operation. Her father, though an elder recipient, spent no longer than younger recipients in healing and getting back to his everyday tasks. At approximately the same time this operation was taking place, Dorry L. Segev, M.D., Ph.D., an associate professor of surgery at John Hopkins University School of Medicine, released a statement supported by the American Journal of Transplantation, stating that patients over the age of 65 were waiting longer than necessary for a lifesaving kidney because their doctors failed to put them in a queue for organs from senior donors. It was believed that older kidneys once were discarded because they conferred too little benefit. However, studies have found that it is actually untrue. By accepting these kidneys, an older person’s chance for survival actually increases. Kidneys from older donors are not expected to live as long as those from younger ones, but older recipients do not need organs to last as long. Studies have found that those willing to accept older kidneys are in fact more likely to be transplanted sooner than those waiting to accept a younger kidney. The mortality rate of those on dialysis waiting for a transplant is higher than that of those that have opted for an older organ and received their transplant sooner. Now, after two years, and against the odds, Henry Tai is as healthy as ever. Both he and Cynthia have “no regrets.” Cynthia has even stated, “This was one of the best decisions I have ever made.” ——— Henry Tai, born on Kauai, was a former Administrative Law Judge in Honolulu. He is currently retired and still resides on Oahu. Cynthia Tai is currently an attorney for the International Criminal Court (ICC) in The Hague. Prior to her position with the ICC, she was a deputy prosecuting attorney for the County of Hawaii. She returns to the states often to give lectures and speeches on the progress of the ICC in prosecuting individuals that are responsible for the most serious crimes of concern to the international community. These are crimes that threaten the international community as a whole. These crimes, falling within the jurisdiction of the ICC are genocide, war crimes, crimes against humanity and crimes of aggression. — Find out more: National Kidney Registry: www.kidneyregistry.org http://www.hawaii247.com/2012/02/11/against-the-odds-a-lengthy-daisy-chain-transplant-benefits-elderly/ Man takes himself off kidney transplant list because he’s happy with home dialys « on: February 11, 2012, 04:12:36 AM » Man takes himself off kidney transplant list because he’s happy with home dialysis Sunday, February 5, 2012 - 6:04 pm OGDENSBURG -- An Ogdensburg man has elected to take himself off of a kidney-transplant list because he says a new home dialysis machine has made it unnecessary. Gary Adams, 70, is retired and spends his time enjoying his family, gardening and woodworking. He has end stage renal disease, which means his kidneys can no The home dialysis machine. longer clean his blood, requiring Adams to undergo dialysis to survive. Unlike most on dialysis, Adams relinquished his spot on the kidney transplant list. “I’m just not interested in it,” said Adams. “I’m happy with the way I’m living my life now.” Adams undergoes hemodialysis at home and not at a dialysis center like the majority of Americans who require the treatments. Adams has a small, portable home hemodialysis machine, the NxStage System One, that hooks up to his home’s existing plumbing and electrical systems and provides him with the same treatments that ESRD patients receive in a dialysis center. Before bringing the machine home to Ogdensburg, Adams and his wife trained in its operation for a few weeks. Once Adams started dialyzing at home, he said he immediately noticed a difference. He was able to dialyze on his own time and more frequently, which was closer to normal kidney function. Soon Adams was able to stop taking all of his blood pressure medications and regained the energy he had been lacking for years, enabling him to exercise, garden and woodwork again. “When I was diagnosed with kidney disease, it was a shock,” said Adams. “I had no family history of kidney disease so I had a lot to learn about it. My advice to fellow kidney disease sufferers is to educate yourself about your treatment options and select the treatment that works best for you.” The NxStage System One is available at Agarwal Renal Center in Ogdensburg.

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To talk to a doctor about doing dialysis at home log onto nxstage.com/findadoctor/. http://northcountrynow.com/news/ogdensburg-man-takes-himself-kidney-transplant-list-because-hes-happy-home¬dialysis-049264 Kidney Donors Not at Higher Risk of Needing Acute Dialysis « on: February 11, 2012, 02:03:54 AM » Kidney Donors Not at Higher Risk of Needing Acute Dialysis Jody A. CharnowFebruary 09, 2012 Living kidney donors are at no higher risk for requiring acute dialysis than non-donors, according to a study conducted in Canada and the United States. Investigators led by Amit X. Garg, MD, of the University of Western Ontario in London, compared 2,027 living kidney donors with 20,270 matched non-donors. After a median follow-up period of 6.6 years, only one donor received acute dialysis, which translated into 6.5 events per 100,000 person-years, according to an online report in Nephrology Dialysis Transplantation. This rate was no different statistically from the non-donor group, in which 14 subjects required acute dialysis, for a rate of 9.4 events per 100,000 person-years. “The overall incidence of acute dialysis is very small and will not occur in over 99.99% of donors in the decade following donation,” the investigators wrote “During this time, living kidney donors are unlikely to suffer from the inciting events that may pre-dispose to acute kidney injury.” The authors added that when such events occur, “it is possible that the remaining kidney adequately compensates to prevent acute kidney injury.” http://www.renalandurologynews.com/kidney-donors-not-at-higher-risk-of-needing-acute-dialysis/article/226964/ This thingy looks promising! « on: February 09, 2012, 01:09:22 PM » CE Mark Clearance for Vital Access's Implantable Hemodialysis Access Device 0 0 0 SALT LAKE CITY, Feb. 8, 2012 /PRNewswire/ -- Vital Access Corporation today announced that its Venous Window™ Needle Guide has been granted CE Mark clearance for use in Europe to provide vascular access for hemodialysis treatment, the most common treatment method for patients with advanced kidney failure. As a result of CE Mark clearance, Vital Access™ has begun initial efforts to ramp-up sales and marketing in Europe for its Venous Window Needle Guide. "This is a major milestone that our team has been focused on since the inception of the company. This approval allows us to begin selling in over 30 countries in Europe and to expand access around the world," stated Doug Smith, President and CEO of Vital Access. He added, "Most important, we are excited to provide solutions to kidney failure patients to help in their struggle to maintain and improve their dialysis access sites." The Venous Window Needle Guide is a subcutaneously implantable medical device that is surgically attached to the top of an Arteriovenous (AV) Fistula to provide a palpable target beneath the skin. When used, the Venous Window Needle Guide acts as a funnel directing a dialysis needle to the patient's AV Fistula. The Venous Window Needle Guide's opening at the AV Fistula surface allows the needle to directly access the vessel utilizing the Buttonhole Technique which has been demonstrated to minimize vessel damage. Vital Access was granted CE Mark clearance for its Venous Window Needle Guide following successful implantation and repeated cannulation during its First in Human clinical trial conducted at sites in New Zealand. Leading the clinical trial as Principal Investigator was Dr. Andrew Hill, MBChB, FRACS. United States Clinical Trial Vital Access is currently conducting a pivotal IDE trial in the United States called the SAVE Trial (Vital Access Venous Window Needle Guide for Salvage of AV FistulaE). For more trial information on the Vital Access IDE trial, please refer to www.clinicaltrials.gov. About Vital Access Vital Access Corporation, founded by Dr. Duane Blatter MD, is a privately held medical device company located in Salt Lake City, Utah that specializes in technologies to improve vascular access. For more information, please call 801-433-9390 begin_of_the_skype_highlighting 801-433-9390 end_of_the_skype_highlighting. © 2012 Vital Access Corporation. All Rights Reserved. Vital Access and Venous Window are trademarks of Vital Access Corporation. Vital Access Contact DaVita has wider health care ambitions; patients wary « on: February 21, 2012, 09:44:38 PM »

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http://www.denverpost.com/breakingnews/ci_20005473 By Michael Booth The Denver Post Denver-based dialysis giant DaVita has ambitious plans to manage all of its kidney patients' health needs while also pushing into primary care for the general public, opening rich new territory but worrying patient advocates. DaVita, with $7 billion in revenue, manages about $33,000 a year in Medicare spending for each of its 142,000 dialysis patients. But those chronically sick patients spend another $55,000 a year in Medicare money for other conditions, from diabetes to heart failure. DaVita would like to join doctor and hospital groups who are contracting with Medicare to create "accountable care organizations," to oversee a patient's entire health care needs. If the ACOs hit quality standards while saving the government money, they can split the savings with Medicare. The dialysis chain has opened a primary care clinic for its own employees, or "citizens" in company parlance, in Tacoma, Wash., and wants to expand the clinic's care to other employers in the area. That clinic will serve as a research and development model for DaVita's wider health care ambitions, DaVita Chairman Kent Thiry said in talks with The Denver Post and Wall Street analysts last week. "For us, this is the Holy Grail," said Thiry, who argues that DaVita's improving quality measures, relationships with patients and doctors, and high volume all could improve care beyond dialysis. Dialysis patients, who already spend about 12 hours a week in clinics owned by DaVita, Fresenius and smaller nonprofits, are wary of giving up more of their care to a for-profit chain's ambitions. "I just don't see this ending well," said Bill Peckham, a Seattle dialysis patient who writes a blog popular in the kidney care field. "You're substituting business ethics for medical ethics, and I think that's a bad deal," said Peckham, who gets his dialysis from a nonprofit center. Though the government is emphasizing its quality mandates in the ACO contracts it has issued so far, Peckham said the model encourages withholding of care to save money and create profit-sharing. DaVita faces legal challenges to its use of the critical dialysis drug Epogen, and to its business relationships with doctors. Thiry calls himself "The Mayor," and employees "citizens" of the DaVita "Village," Peckham noted. "Where does that leave the patients? We're the 'crop.' We're the 'ore' in the mines. That's not a fun place to be if you're the person who needs dialysis," he said. Most other ACO proposals are dominated by groups of physicians, hospitals, or the two working together. Thiry said DaVita has been encouraged to branch out into more managed care areas by early success in a pharmacy it launched called DaVita Rx. DaVita Rx handles specialty drugs not part of a dialysis patient's usual "bundle" of services paid by Medicare, and is already a $300 million business. The average dialysis patient is on 8.6 prescriptions. The company, with 1,600 dialysis clinics, opened a general health clinic for 1,000 employees in Tacoma to combat rising prices in DaVita's own health plan. "We think there could be a real business model there that we can provide to other employers of different sizes," Thiry told analysts. DaVita is not interested in employing many primary care doctors directly at the moment, Thiry said. (Kidney patients are referred to DaVita clinics by their nephrologist, or kidney specialist.) Thiry said DaVita's multiple locations and high volume fit well with patients' overall needs. Dialysis patients are often diabetic, he said as an example, and need frequent foot checks to ward off infections from poor circulation. Those checks could easily happen while 30 patients at a time sit for hours in a dialysis clinic. "We want to be a role model for American health care," he said. The U.S. government's first wave of ACO partnerships did not include multinational corporations like DaVita. The company has been working with Medicare officials on a pilot proposal, and would need to see the government's terms in a specific agreement before moving ahead in coming months, Thiry said. DaVita would not force patients to use specific doctors or hospitals, Thiry said, but the company "might give our opinion" on the best providers.

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Other independent experts critiquing the ACO model give it high potential for savings and quality, but echo Peckham's concerns about the power of the "gatekeeper" model. The government must carefully monitor patient outcomes, they say, and patient advocates must watch to make sure the ACO operator doesn't skimp on hospital stays or other expensive forms of care. Thiry said DaVita would handle concerns about withholding care to save money by being "totally transparent" about how patients fare. Logged http://www.billpeckham.com "Dialysis from the sharp end of the needle" tracking industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis Incenter Hemodialysis: 1990 - 2001 Home Hemodialysis: 2001 - Present NxStage System One Cycler 2007 - Present * 4 to 6 days a week 30 Liters (using PureFlow) @ ~250 Qb ~ 8 hour per treatment FF~28 Bill Peckham Premium Member Elite Member Offline Gender: Posts: 2323 Re: DaVita has wider health care ambitions; patients wary « Reply #1 on: February 21, 2012, 09:58:58 PM » Thiry said DaVita would handle concerns about withholding care to save money by being "totally transparent" about how patients fare. This answer does not suffice. Profits can be increased by, in effect, shifting costs to the dialyzed. I wonder what sort of coercion will DaVita employ to increase patient compliance with fluid and dietary guidelines? What medical care will patients be subject to as a requirement to receive their dialysis at DaVita? If nephrologists become employed by DaVita will the nephrologist act to decrease the disease burden or will they work to increase economic efficiencies? A patient centered ACO would put the doctor/patient relationship at the center of the model, and measure success in terms that are meaningful to the dialyzed. « Last Edit: February 21, 2012, 10:00:44 PM by Bill Peckham » Logged http://www.billpeckham.com "Dialysis from the sharp end of the needle" tracking industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis Incenter Hemodialysis: 1990 - 2001 Home Hemodialysis: 2001 - Present NxStage System One Cycler 2007 - Present * 4 to 6 days a week 30 Liters (using PureFlow) @ ~250 Qb ~ 8 hour per treatment FF~28 cattlekid Full Member Online Gender: Posts: 410 Re: DaVita has wider health care ambitions; patients wary « Reply #2 on: February 22, 2012, 11:42:47 AM » This whole thing makes me sick to my stomach. I can't see how this would be good for the patient in any way, shape or form. Dialysis clinics are the worst at infantilizing their patients. At least with my current nephrologist and remainder of my health care team, I can have an adult conversation and make my own choices with their guidance. With my clinic however, it's "my way or the highway" and "we know better than you". I shudder to think about the stupid hoops patients would have to jump through if DaVita coordinated all their care. Logged Lillupie Full Member Offline Gender: Posts: 464 wedding 12-10-11 Re: DaVita has wider health care ambitions; patients wary « Reply #3 on: February 22, 2012, 01:25:13 PM » I hate Davita with the passion and will be leaving to go elsewhere the first opportunity I get. They are constatntly threatening me with "Medicare wont pay" if i dont comply and do what they say. Like I have to beg for epo. THey wont let me take the epo at home like I did for 4 years, they make me come to the center just for them to save money.

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Lisa Check out my Facebook profile for CKD "Help Lisa Spread Awareness for Kidney Disease" It is my utmost dream and desire to reach out to other kidney patients for them to know that they are not alone in this, also to reach out to those who one day have to go on dialysis though my book i am writing! dx with lupus nephritis 5/99' daughter born 11/2005 stage IV CKD 11/2005-6/2007 8/2007- PD cathater inserted 9/2007- revision of PD Cathater 10/2007 started PD Just an unhappy pappy Re: DaVita has wider health care ambitions; patients wary « Reply #4 on: February 22, 2012, 02:18:49 PM » My State Rep gave davita a chance to help out before the state hearing we had yesterday - looks like they are declining. Ok, gloves are back off. A picture is worth a 1000 words. Here are 1000 plus: http://dialysisethics2.org/open_images/flyers/Legislative_flyer.pdf I'm getting chills thinking of davita expanding their already dysfunctional organization. « Last Edit: February 22, 2012, 02:27:11 PM by plugger » Logged Gift of organ donation keeps mother going despite loss « on: July 30, 2009, 03:08:14 PM » COMMENTARY Gift of organ donation keeps mother going despite loss By MARY SANCHEZ The Kansas City Star Despite the tears, the sorrow in her expression, Cynthia Pecina will convince you that her son Joseph is still living. Her voice is calm and assured as she explains: A 65-year-old real estate agent, married 46 years and a father to three children, received Joseph’s heart. A 43-year-old, also married, with two children, has Joseph’s liver. A 14-year-old girl will return to school, freed from a dialysis machine because of Joseph’s kidney. Its mate ended a man’s two-year wait. Two people now see with Joseph’s corneas. His marrow will go to cancer patients, grafts will be made of his bones and connective tissue. Amputations will be avoided. Veins will be transplanted. Dozens will experience a better life through the death of one 18-year-old, Joseph Pecina-Pine, who — just hours after proudly crossing a stage to accept his high school diploma — suffered fatal head trauma in a May car wreck. As his mother learns more details from the Midwest Transplant Network, she talks of her loss as an unimagined gift, a way to appreciate life. But this Kansas City mother always held those values. Joseph’s death was just the tragic trigger to bring them into action. Pecina had long preached about the selfless gift of organ donation. It was a bit of a family joke, how so little of her body should be left that just a few ashes would remain to scatter in Mexico. So that horrible night when doctors declared her son gone, her first wish was to find his wallet. He had insisted on signing the organ donor option. “Save every part of his body for others,” she recalls saying. “I want him to live for others.” Despite our fascination with medicine, a plethora of hospital-related TV shows, only 38 percent of licensed drivers are registered to be donors. Pecina would like to tell them how preparations for harvest gave her time for a goodbye. She rested beside her son. She held his warm hand, listened to his heart beat, smiled at the gel in his hair, the smell of his familiar cologne. A friend of Joseph’s, 21-year-old Evaristo Limas, also died that night. He was driving the pickup that sped from police and rolled four times. Pecina’s aware that the other young man had mixed drinking with driving before and was on probation. The accident toxicology reports are not yet available. “It’s not his family’s fault,” she says, with not a hint of hesitancy. “They lost a brother, a son, just as we did.” Pecina’s sorrow is as deep as any parent’s in this situation. But it’s also different. I suspect this is because of how she chooses to live through her son’s passing. The name Joseph means “God increases.”

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“It keeps me going, knowing that he is still alive in somebody, that is the biggest gift,” she said. “He’s going with God, but he is still living.” To reach Mary Sanchez, call 816-234-4752 begin_of_the_skype_highlighting 816-234-4752 end_of_the_skype_highlighting or send e-mail to msanchez@kcstar.com. Posted on Wed, Jul. 29, 2009 11:14 PM http://www.kansascity.com/115/story/1354023.html Medical center commits to giving Oakland father a kidney transplant Medical cen « on: February 10, 2012, 03:44:01 AM » Medical center commits to giving Oakland father a kidney transplant By Hannah Dreier Contra Costa Times Posted: 02/09/2012 11:48:08 AM PST Updated: 02/09/2012 10:30:20 PM PST UC San Francisco Medical Center said Thursday that it is committed to providing an illegal immigrant from Oakland the kidney transplant he needs to live. The announcement followed the nationwide response to a story in this newspaper last week about the man's plight. Jesus Navarro, a 35-year-old father, became the focus of a national "Save Jesus" campaign after it was reported that he might not receive the transplant because of his immigration status. Navarro had been waiting for a kidney transplant for more than six years. He had private insurance to pay for the operation, and was nearing the top of the waiting list at UCSF. But Navarro says administrators at UCSF, after learning about his immigration status in May, told him that the medical center could not provide the transplant because of uncertainty about whether he could afford follow-up care, including costly anti-rejection medications. His wife said she offered to donate her own kidney. In its first public statement about its handling of Navarro's case, the medical center said Thursday that concerns about follow-up care have been addressed and there had been a miscommunication between administrators and Navarro over his eligibility for a transplant. The announcement was met with joy from Navarro and his supporters. "I am very happy I will receive a transplant and be able to play with my daughter again," he said on his website. The medical center said that it Advertisement never decided to deny Navarro a transplant. Rather, his status on the waiting list had changed to "inactive" because of concerns that his immigration status might prevent him from receiving the needed care and medication after the transplant. The change to inactive status meant Navarro "would not receive a transplant even if he reached the top (of the list) unless he had a reasonable coverage plan in place," according to the joint statement issued by UCSF on behalf of Navarro and the medical center's chief medical officer. "Mr. Navarro has told UCSF that, to him, this meant he could not get a transplant until he resolved his immigration status; this was not what UCSF was trying to convey," the statement read. The statement went on to say, "UCSF regrets the misunderstanding and is committed to reviewing its processes to make sure that communication is consistent and clear with all patients, including Mr. Navarro." UCSF also said it referred Navarro to two community-assistance organizations that specialize in immigration issues. While Navarro's waitlist status remains "inactive," a medical center spokeswoman said the center expects all remaining issues to be resolved in coming months. Navarro, who has a 3-year-old daughter, is high on the waiting list and could reach the top in three to six months, UCSF said. The donor would not be his wife. UCSF's kidney transplant center is one of the largest in the world, and the medical center says it has performed more transplants than any other clinic in the country. UCSF said in the statement it does not discriminate on the basis of immigration status. Last week, Navarro's allies set up a website and Facebook page, established a Twitter hashtag and launched an online petition targeting the hospital, garnering 140,000 signatures from around the country. Navarro, who is on dialysis, and an advocate met with UCSF administrators this week. "They feel comfortable that we've come up with a good plan for aftercare," said Donald Kagan, a partner in a Berkeley technology firm who has become Navarro's chief advocate. He did not detail the plan. Kagan received a kidney transplant himself at UCSF in 2010, and said he was never asked about his legal status. His donor was a Nicaraguan immigrant who came to this country illegally and later gained citizenship. Navarro said he did not seek out help from nonprofit organizations like the ones advocating for him now because he assumed that people would not care about his situation. In January, Navarro was caught in an immigration audit and lost his job of 14 years at Berkeley's Pacific Steel. His supporters have arranged to have him keep his private insurance for at least 18 months. Cesar Navarro, who moved to San Pablo from Minnesota to help his older brother when he fell ill seven years ago, described the national campaign as a "godsend." Going forward, UCSF will ask all transplant candidates about their immigration status and help patients who are undocumented find a way to guarantee aftercare, spokeswoman Amy Pyle said. "It's a wake-up call for us to find out that people aren't always following through," Pyle said.

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http://www.insidebayarea.com/news/ci_19929067?source=most_viewed In Practice: Father's decision makes a hero of his dying son « on: February 09, 2012, 04:39:25 AM » In Practice: Father's decision makes a hero of his dying son Talking to a family about harvesting organs for transplant can be painfully difficult. But one father looked beyond grief to his son's legacy. January 16, 2012|By Robert Lanz, Special to the Los Angeles Times He was a young Mexican man, just 19 years old and in the prime of life. He had come to the United States, found a job, worked hard and had begun to achieve the American dream. He made enough money to send some home to his parents, and on Sundays he could enjoy a game of soccer in the park. And there he was, standing there at the goal waiting for the ball. Then he went down. Brain aneurysm. Nobody knows for sure why aneurysms happen. They just do. And so the young man's life began to end as the part of his brain that made him be the guy he was faded away. The first night in the hospital was terrible for everyone. His friends had all shown up with high hopes that sophisticated American doctors could save him. But for all intents and purposes, the young man was already gone. His brain was dead. We had two good reasons to use all of our high-tech machines to keep the rest of him alive. First, it is in the best interests of the family to have a body to embrace when they say goodbye. There is a need for closure. The second good reason was that this patient was the perfect organ donor. From the neck down, everything worked perfectly. We could save his organs and give them to someone else. If we can get consent from the family, we call the regional organ procurement agency and they figure out who will match up with the donor. Then the "harvesting" teams fly in from different parts of the country, go into the operating room and take the parts they need. When they're done, they fly back to their own hospitals, where anxious patients are waiting. The nurse called me to the dying patient's room when the father showed up late that night. I wasn't looking forward to what I knew was going to be a difficult situation. This man hadn't seen his son for three years, and now he would be watching machines breathe for him until he died. It would be a sad goodbye. Medical ethics and the law say we have to approach every family of a dead or dying patient about the possibility of organ donation. There's even a place on the paperwork we fill out when patients die in the hospital: "Was the family approached about organ donation?" "If not, why not?" There's no place on the form to explain that you just weren't up to it or that it was somebody else's turn. There's no place to write "I was afraid I'd start crying," or "The patient looked just like my brother or mother or father or someone else I love." There was only a box to check. Sometimes life is just that simple. It doesn't matter how you feel, only what you do. And that night, it was my turn to do. When I came into the room, the father's pleading eyes caught mine and there was no place for either of us to hide. There was only that damn box to check. Everyone else in the patient's existence until that time was about life. Not me — I was about death. Slowly, I explained what had happened. I told him death was imminent, that even with all our machines we could keep his son alive only a little bit longer. He seemed to understand that death would come no matter what we did, and his face ever so slightly signaled acceptance. He quickly made his peace with death. And then he looked me in the eyes again as if to say, "Now what?" I had to check the box. "Mr. Lopez," I said, "how would you feel about letting us take your son's heart and lungs and some other important parts?" "What would you do with them?" he asked me. "Save lives," I answered. I explained how that worked, and he looked truly amazed. I could relate. I've been doing this for a long time, and I am still awed by the concept of organ transplantation.

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I could see from the way he held his chin in his hand that I was getting close to a yes. I could almost visualize myself putting that check in the right box. I knew he just needed some final piece of understanding, and after 30 years of traveling in Mexico, I knew exactly what it was. This man would not return to his little village in defeat, sad and grieving. He would go home the proud, respected father. We could make his son a hero and send him home in glory. So we talked. "When your son came to this country, he had dreams and plans. He wanted to be a success in America. He wanted to make you proud of him. He wanted to come home a hero, and a real hero is a man who doesn't think of himself first. He is a man who is willing to make sacrifices. A hero is a man who will give up his own life so others may live. That is what a hero is." The old man looked deep into my eyes. "I will tell you in the morning" he said, and then he left. The next day, when I went to meet with the father, he greeted me with an embrace. "Let us talk of heroes," he said. "How many lives can my son save today?" "He can save two lives with his kidneys, two lives with his lungs and another with his heart," I said. "He can save a life with his liver and help a diabetic with his pancreas. With his skin we can heal the burns that otherwise would be forever painful, and with his bones we can help many people walk. With his eyes he will bring sight to two people who would be in darkness without him. He will save many lives and change many more." "Good, then we can put up a plaque in the church by the plaza so that everyone in the village can see. My son will come home a hero. I hope you will do our family the honor of coming to visit the plaque sometime and see the place where my son grew up." That night, when I filled out the death form, my tears fell on the part that asked if the family was approached about organ donation. I had never felt so good about putting an "X" in the box. I had never felt better about what I do. It just doesn't get any better than being on a team that saves lives and at the same time helps ordinary people become heroes. Someday I'm going down to that village in Mexico. I'm going to see that plaque and meet that young man's family. I need to tell them again what a hero he was. They all need to know he saved so many lives. Robert Lanz, a retired licensed clinical social worker, spent 30 years working the night shift in Huntington Hospital's emergency room in Pasadena. He is now president of Giving Music, a nonprofit that arranges concerts for hospitals, nursing homes and other healthcare facilities. In Practice is a forum for doctors, nurses and others in healthcare to write about their experiences on the job and lessons they have learned from them. Please send submissions (800 words or fewer) to health@latimes.com. http://articles.latimes.com/2012/jan/16/health/la-he-practice-organ-donor-20120116 Severe Vitamin D Deficiency Raises Death Risk in Hemodialysis Patients « on: February 06, 2012, 05:24:48 PM » Severe Vitamin D Deficiency Raises Death Risk in Hemodialysis Patients http://www.renalandurologynews.com/severe-vitamin-d-deficiency-raises-death-risk-in-hemodialysis¬patients/article/225435/ Hemodialysis (HD) patients with severe vitamin D deficiency are more than twice as likely to die from any cause compared with those who have sufficient levels of the vitamin, according to a German study. The study, which retrospectively examined data from 6,518 HD patients, also showed that severe vitamin D deficiency —defined as a 25-hydroxyvitamin D blood (25(OH)D) level below12.5 ng/mL—was associated with a significantly increased risk of death from cardiac disease, infectious disease, and cancer. “The findings of this evaluation highlight the need to ensure an optimal vitamin D status especially in patients with end-stage kidney disease on hemodialysis,” the authors concluded in Anticancer Research (2012;32:391-396). The investigators, led by Rolfdieter Krause, MD, of the KfH Nephrological Center in Maobit, Berlin, also concluded that their findings support the notion that “cholecalciferol supplementation, according to current clinical guidelines, is an essential part of the treatment of patients undergoing hemodialysis.” Of the 6,518 subjects, 41.2% were had severe 25(OH)D deficiency. Compared with patients who were 25(OH)D sufficient (levels of 30 or above), those with severe deficiency had a 2.67 times increased risk of death from any cause and a 57%, 48%, and 51% increased risk of death from cardiac disease, infectious disease, and cancer, respectively, after adjusting for potential confounding factors.

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Dr. Krause and his colleagues observed that their study results are consistent with data from HD patients in the United States and data from the general population. In addition, they noted that their finding of an increased risk of death from infectious causes agrees with evidence that vitamin D is linked to antibacterial defense mechanisms via the toll-like receptor and cathelicidin. Ten-way kidney transplant benefits Burgeo and Ramea natives « on: February 07, 2012, 04:39:12 AM » Ten-way kidney transplant benefits Burgeo and Ramea natives Latest News Published on February 6, 2012 Brodie Thomas When Burgeo resident Michael Green agreed to donate a kidney late last year, he had no idea that a woman originally from Ramea might receive it. He still doesn’t know for sure that Sharon Crewe, now of Stephenville Crossing, received his kidney on Jan. 20. Medical officials won’t say for sure who donated to whom out of privacy concerns, but both Michael and Ms. Crewe have their suspicions. “On Friday they only did two operations,” said Ms. Crewe. “Michael came out of the OR and I went in.” The two were part of a 10-person kidney exchange through a program known as the Living Donor Paired Exchange program. Five donors and five recipients took part in the exchange that benefited Ms. Crewe and Michael’s father Ben Green, 57. The three southwest coast residents travelled to Halifax’s QEII Health Sciences Centre for operations on Jan. 19 and 20. Even if Ms. Crewe didn’t receive Michael’s kidney directly, she benefited from the chain of giving that resulted from the paired exchange program. Michael, 28, originally wanted to donate a kidney to his father. Although he wasn’t a match for his father, doctors offered him the chance to donate to a stranger so Ben could get a kidney in return from another stranger. Michael’s decision to donate was an easy one for him. Ben is a diabetic and his kidneys were failing. In the summer of 2011, Ben started travelling from Burgeo to Corner Brook for dialysis three times a week. “Dad said they only way he was going to get better was if he got a kidney,” said Michael. “I said, ‘If there’s anything I can do, I’ll give you my kidney. It’s not a big deal.’” Ben wasn’t too keen on letting his son take part in the paired swap. “At first I didn’t want to go along with that,” said Ben. “I didn’t want Michael to get involved. But he insisted. After talking to the doctors in there, he was convinced.” Dr. Ian Alwayn was the surgeon who operated on both Michael and Ms. Crewe. He said paired exchanges such as this are becoming more common. “This program has been up and running since 2009. It started small in B.C. and Ontario but is now extended to all the provinces.” Dr. Alwayn said an elaborate computer program creates the potential chains of giving. Every three or four months a match cycle is run and hundreds of potential matches are produced. Doctors then work out the chains of giving. The 10-person swap that was done in January was likely the largest of its kind done in Halifax so far, but 10-person exchanges have taken place in other parts of the country. Dr. Alwayn hopes paired donor exchanges will reduce wait times for patients and reduce overall wait lists across Canada. “We know that kidneys from live donors last longer than kidneys form deceased donors,” said the doctor. “We appreciate and value donors within the chain, such as the Green family.” Surgery Michael said he was originally going to fly to Saskatoon, Sask. to donate. At the last minute, that recipient was taken off the list. Michael was then called in to Corner Brook for more tests and bloodwork. He was there at the same time as Ms. Crewe, and the two spoke. The pair knew each other because the dialysis community is small, and ties between Burgeo and Ramea are close, too. Ms. Crewe had met Ben many times before while receiving dialysis. Ms. Crewe said she had a feeling about what would happen after that day in the hospital with Michael. “As we were leaving the hospital, I said to my dad, ‘I’m getting Michael’s kidney.’” For Ms. Crewe, it was her third kidney transplant. The first was from her mother in 1989. That only lasted four months. The next was in 1993 from a deceased organ donor. That one functioned for 16 years. The 41-year-old said receiving a third kidney from a live donor was like winning the jackpot. Ms. Crewe wasn’t originally part of the paired donor program. She didn’t have a friend or family member give up a kidney. She believes one recipient dropped off the list while a donor stayed on. It meant she was contacted at the last minute to take part. Regardless of whom it belonged to, the kidney she received is functioning. A few days following the surgery, her creatinine levels ranged from 66 to 93. In the days before her surgery, her creatinine levels were at 800. Ben’s story Ben said in the early hours after his surgery, his body appeared to be rejecting the kidney. Doctors adjusted his medication and as of last week he was doing great. “They figured they had a real good match but you can’t depend on what your own body is going to do to something foreign,” he said. This was Ben’s first transplant. He said he noticed a difference in his health almost immediately. “The next day I was a totally different person,” he said. “I had more energy. There were no pains in my back or my knees. And I just figured I was getting old.” Ben said the people of Burgeo were incredibly generous when they heard he and Michael would be travelling out for surgery. They held a bingo and other fundraisers to help with travel

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expenses. “I’d say most of the community sent me get well cards and donations,” said Ben. The coincidences don’t stop with the Burgeo-Ramea connection. Ben stayed with his niece while in Halifax. The niece’s husband’s co-worker took time off work to take part in the exchange, as well. While on dialysis for six months, Ben began to realize just how many people on the southwest coast are having kidney trouble. He hopes more families will have the opportunity to take part in the paired exchange program. “They say it’s like winning the lottery,” he said. “I feel pretty strongly that I did win the lottery. I got a second chance at another life.” http://www.gulfnews.ca/News/2012-02-06/article-2886995/Tenway-kidney-transplant-benefits-Burgeo-and-Ramea¬natives/1 Woman donates kidney to stranger, end up a perfect match « on: February 03, 2012, 04:04:25 AM » Woman donates kidney to stranger, end up a perfect match Posted: Feb 03, 2012 12:33 AM PST By Cami Mountain, Anchor, Multimedia Journalist - bio | email ADAMS COUNTY (WAOW) -- It's been said, sometimes things don't go your way for a reason. This story proves that. Two central Wisconsin women, who'd never met ended up being a perfect match for a kidney donation. But it's how they met that's the real story. Jill Dillon and Sara Solinsky met by a lifesaving chance. Sara, in desperate need of a new kidney. Jill, with a desperate desire to give. Just a few months before the pair met Jill was set to donate a kidney to a family friend named Lonnie . Unfortunately, there was a barrier in the donation. Lonnie was able to find another donor and had a successful surgery. Jill says, "We ended up being told by one hospital that we could to ahead and do it, we were a match but two weeks before surgery they canceled for other health reasons that he had. We ended up transferring to UW Hospital who told us, according to their records, we were not a match. Let down, Jill was back to square one. That's when she told a friend, if you know someone who needs a kidney, I'll give them mine. That friend did. She just got a big smile on her face and I said, "What? Do you think I'm crazy?" And she said, "No, I don't think you're crazy but I think I know of someone who may need your kidney." That someone was Sara. In her early twenties Sara was diagnosed with Blastomycosis and learned she was born with only one kidney and it was failing. Sara needed dialysis and was constantly tired and nauseous, making it difficult to care for her young daughter, Ashlyn. And when she heard about Jill, she was cautious. "Right away I thought, oh my God. This is it. But then in the back of my mind I thought, don't get your hopes up. This might not work. But it did. Jill and Sara were a perfect match and back in July they went through with the surgery. Sara says, "She's not only helped me, she's helped my family, Ashlyn. Without her, I would have been on dialysis." Seven months later, they're doing great and have created a new, extended family. Jill adds, "I now have Sara who's like another sister to me and it's been wonderful." On Saturday, February 4, at the Central Wisconsin Fairgrounds Junior Expo building, a fundraising benefit will be held by Sara and Jill to defray the costs of the kidney operations. It runs from 12-10 PM. Also, donations can be written out to Sara Solinsky Benefit, and mailed to or dropped off at Pioneer Bank in Auburndale, Wisconsin. http://news.google.com/news?pz=1&cf=all&cf=all&ned=us&hl=en&q=dialysis&scoring=n&zx=mz3sl9vf4eef Snapshot of dialysis: Who's getting treated at home? « on: February 03, 2012, 03:57:01 AM » Snapshot of dialysis: Who's getting treated at home? February 2, 2012

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Home-based dialysis treatments are on the rise in both the developing and developed worlds, but developed countries appear to be turning to them less often, according to a study appearing in an upcoming issue of the Journal of the American Society Nephrology (JASN). The findings, which provide a global snapshot of dialysis use among patients with kidney failure, may impact future business and research innovations. Dialysis treatments for kidney failure come in two forms: peritoneal dialysis is usually done at home, while hemodialysis is predominantly clinic-based. During peritoneal dialysis, fluids that are pumped into the abdominal cavity collect wastes pulled in from the blood and are then removed from the body. During hemodialysis, blood is removed, purified by a machine, and returned to the body. Peritoneal dialysis is less expensive than hemodialysis, but its use seems to be declining, particularly in developed countries. To get a sense of the recent trends in peritoneal dialysis use around the world, Arsh Jain, MD (University of Western Ontario, in London, Canada) and his colleagues analyzed records from 1997 to 2008 in 130 countries. Among the major findings: In 2008, there were approximately 196,000 peritoneal dialysis patients worldwide, representing 11% of the dialysis population. In total, 59% of peritoneal dialysis patients were treated in developing countries and 41% in developed countries. Over the 12 years of the study, the number of peritoneal dialysis patients increased in developing countries by 24.9 patients per million population and in developed countries by 21.8 per million population. The proportion of all dialysis patients treated with peritoneal dialysis did not change in developing countries but significantly declined in developed countries by 5.3%. These findings indicate that the number of patients treated with peritoneal dialysis rose worldwide from 1997 to 2008, with a 2.5-fold increase in the prevalence of peritoneal dialysis patients in developing countries; however, the proportion of all dialysis patients using this type of treatment continues to decline in developed countries. "Our findings may impact future business and research innovations," said Dr. Jain. Because of the increasing use of peritoneal dialysis in the developing world and the lower cost of doing research there, "it may be the developing world and not the developed world that drives future medical innovations in peritoneal dialysis," he said. More information: The article, entitled "Global Trends in Rates of Peritoneal Dialysis," will appear online at on February 2, 2012, doi:10.1681/ASN.2011060607 Provided by American Society of Nephrology (news : web) http://medicalxpress.com/news/2012-02-snapshot-dialysis-home.html Man waits 10 years for kidney transplant.. and then finds perfect match living n « on: February 03, 2012, 03:35:47 AM » Man waits 10 years for kidney transplant.. and then finds perfect match living next door Feb 3 2012 AN organ transplant patient who has suffered kidney failure for 10 years couldn’t believe his luck when he found a life-saving match – from his NEIGHBOUR. Alan Love, 31, suffers from a rare form of renal failure because of an inherited condition which means he has been on dialysis for 12 years. Knowing that he would die without a transplant, Alan’s family were all tested but none was a match. So Alan, who attends hospital three times a week for dialysis, was stunned to find his neighbour Gillian Paterson, 27, was a perfect match. The pair will undergo surgery in coming weeks. Alan, who has been unable to work or go to university because of his condition, said: “Most neighbours only pop round to borrow a cup of sugar – Gillian is giving me a kidney. “She’s got to be the best neighbour in Scotland. I’m ecstatic – she is quite literally giving me a new lease of life.” Alan, who lives in Raploch, Larkhall, suffers from a rare kidney condition called De Toni-Fanconi syndrome, which caused the death of his father Russell when he was only 50. They are only the second father and son in the UK to have the condition. Alan and Gillian have been neighbours for a number of years. They went to Larkhall Academy as teenagers but lost touch until Gillian, who has a three-year-old girl called Jodi, moved to the neighbourhood. She said: “I had been trying to convince Alan for years. Once we found out that we had the same blood group, I wanted to donate to him. “But he was having none of it – he didn’t think it was fair to ask me. But eventually I managed to convince him that this is something I wanted to do for him because he is my friend and I love him. “My own family are really supportive and my daughter calls him uncle Alan. She understands he is sick and that mummy is helping him.” Alan said: “Gillian has undergone a number of tests. “However, doctors told me she is the closest match I’ll get to a blood relative, which is unbelievable. “I am really over the moon. Words can’t explain how I feel. It will change my life forever. “I want to go to university and get a degree and hopefully work in nursing. I feel I need to give something back for what they have given me over the years.” The transplant

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comes less than two months after Alan’s niece Aimee, seven, wrote a letter to Santa asking for a new Kidney for her uncle. She wrote: “My special wish is for my uncle, who gets dialysis, to get a transplant and be well again so he can run around with me and my friend and tickle me lots.” http://www.dailyrecord.co.uk/news/scottish-news/2012/02/03/man-waits-10-years-for-kidney-transplant-and-then¬finds-perfect-match-living-next-door-86908-23733087/ The Ethical Complexities of Online Organ Solicitation via Donor–Patient Websites « on: January 28, 2012, 06:28:33 AM » The Ethical Complexities of Online Organ Solicitation via Donor–Patient Websites: Avoiding the “Beauty Contest” E.M. Neidich1, A.B. Neidich2, J.T. Cooper2,3, K. A. Bramstedt4 DOI: 10.1111/j.1600-6143.2011.03765.x American Journal of Transplantation Volume 12, Issue 1, pages 43–47, January 2012 Abstract The proliferation of the Internet has spurred the creation of websites dedicated to facilitating living directed organ donations. We argue that such sites potentially devolve into “beauty contests” where patients in need are evaluated on the basis of their personal appearance and biography—variables which should have no relevance to organ allocation. Altruism should be the guiding motivation for all donations, and when it does, there is no place for a beauty contest. The power of the Internet is optimally used when it facilitates Good Samaritan donations—donations to any stranger, rather than handpicked ones. Social networking sites which aim to match potential donors and patients should mask personal identifying information, allowing the ethical principles of altruism and justice to guide organ allocation. http://onlinelibrary.wiley.com/doi/10.1111/j.1600-6143.2011.03765.x/abstract Sports digest: Prognosis improving for Tom Brady's quarterback mentor « on: June 27, 2011, 03:06:47 AM » Sports digest: Prognosis improving for Tom Brady's quarterback mentor Staff and wire reports Posted: 06/26/2011 06:58:54 PM PDT Updated: 06/26/2011 09:54:21 PM PDT Tom Brady's quarterback mentor, Tom Martinez, is a candidate for kidney and heart transplants two weeks after his family used Facebook to announce the San Mateo County coaching icon had just weeks to live. "I'm feeling better, and I'm optimistic after being almost completely certain that I was going to die," Martinez told the San Francisco Chronicle during his 33rd annual quarterback camp Saturday at Woodside High. Martinez, who suffers from complications from diabetes, told the Bay Area News Group two weeks ago that "My numbers say I'm basically gone'' after doctors at Stanford told him his blood pressure was too low to continue with dialysis and he had weeks to live. A day earlier, his daughter, Linda Martinez Haley, issued a farewell statement from Martinez on Facebook. Martinez told the Chronicle that the post generated an unexpected response -- offers of kidney donations and an opportunity to be seen by doctors at UCLA, where Martinez said doctors adjusted his pacemaker and a donor with his blood type was found. "Incredible, isn't it?" Martinez told the Chronicle, adding he will return to UCLA for more tests this week. "They might try to do a double transplant if everything works." http://www.mercurynews.com/other-sports/ci_18358561 Woman gets kidney from hubby's mistress « on: February 20, 2012, 04:16:01 AM » Woman gets kidney from hubby's mistress Published: Feb. 16, 2012 at 3:41 PM NEVSEHIR, Turkey, Feb. 16 (UPI) -- A Turkish woman who has been receiving kidney dialysis treatments for 12 years said she received a kidney from an unlikely source -- her husband's mistress. Meliha Avci, 34, of Nevsehir, said her husband, Mehmet, began an affair with Ayse Imdat, 34, five years ago after meeting her at the hospital while Meliha was receiving treatment, Today's Zaman reported Thursday. Meliha, who previously received a blood donation from Imdat, said she only recently found out about the affair. "We have shared blood, we have shared my husband and now we are sharing kidneys," she said. She said Imdat insisted she accept the kidney donation. "In all the years that I have suffered from kidney problems I have never said to anyone, 'Would you give me a kidney,'" Meliha Avci said. "However, Ayse was insistent that I should take her kidney. Now my life has completely changed. I have Ayse and my husband to thank for this."

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Read more: http://www.upi.com/Odd_News/2012/02/16/Woman-gets-kidney-from-hubbys-mistress/UPI-93341329424917/#ixzz1mub0ogZ7 Lack of Unified System Hampers Kidney Transplant Efforts « on: February 20, 2012, 03:18:59 AM » Lack of Unified System Hampers Kidney Transplant Efforts By KEVIN SACK Published: February 18, 2012 Many of the most prominent names in the field of kidney transplantation agree that the way to maximize the number of transplants through paired exchanges is to create a single, nationwide registry. That, they note, would vastly expand the pool of potential matches among transplant candidates who have willing but incompatible donors. And yet, more than a decade after the first organ swap in the United States, the transplant world remains disjointed, with competing private registries operating with little government oversight or regulation. The federal government started a paired exchange pilot project in late 2010, but it lags far behind nonprofits like the National Kidney Registry in making successful matches. Whether the disparate groups will join forces is uncertain. But the continuing fragmentation may be preventing potential transplant matches. And it means that a number of sensitive ethical concerns, like ensuring that kidneys are allocated according to universally accepted priorities, could go unsettled for years. “It’d be best if we could have a master registry,” said Katrina A. Bramstedt, a transplant ethicist and co-author of “The Organ Donor Experience: Good Samaritans and the Meaning of Altruism.” “But there are so many little kingdoms in the transplant world, and I don’t know that we’ll ever break away from that.” Registry leaders regularly call for a unified system even as they expand their own domains. Some are national in scope, others are regional, and some exist within a single hospital. “Unfortunately, I’m part of the problem, and I regret that,” said Dr. Michael A. Rees of the University of Toledo Medical Center, whose registry, the Alliance for Paired Donation, put together the first non-simultaneous kidney chain. “Dealing with the egos of transplant surgeons — and I’m one of them, and we all think we have the right way — is like herding cats. It’s such a solvable problem. We just need to work as a single entity.” In late March, a consortium of medical societies plans to hold a “consensus conference” near Washington to begin the search for common principles, and perhaps a common structure. “Organs should be seen as a national resource,” said the meeting’s organizer, Dr. Sandy Feng, a transplant surgeon at the University of California, San Francisco, medical center. “And so we should look for agreed-upon principles to guide practice.” The conference agenda includes discussion about whether there should be a single registry or whether multiple networks might work more effectively because of the logistical challenges posed by chains, Dr. Feng said. If there are going to be several registries, she said, they should abide by the same policies about how organs are distributed. For example, should more weight be given to making difficult matches for recipients who are particularly prone to rejection, or to achieving as many transplants as possible? Should a patient’s health status or age or time on the federal transplant waiting list be considered? The answers now vary from registry to registry. “This is organ allocation,” said Dr. Dorry L. Segev, a transplant surgeon at Johns Hopkins Hospital, which has a registry that caters to hard-to-match patients. “They’re deciding who lives and who dies.” With black-market organ brokers and Internet matching in the headlines, pioneers in kidney-paired exchange recognize that they may be one misplaced shipment or medical mishap away from deeper scrutiny. But they also continue to stretch boundaries. Garet Hil, founder of the National Kidney Registry, which is based on Long Island, N.Y., said he hoped to attempt a transoceanic swap some day soon. Others have discussed starting chains with deceased donor kidneys, adding magnitudes of logistical complexity. “It is a little bit like the Wild West,” said Dr. Robert A. Montgomery, another transplant specialist at Hopkins. “There has to be some regulation, and it has to be fair, because if people don’t think it’s fair, they’re not going to donate organs.”

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The paired exchange registries have fought the perception that kidney swaps unfairly steer the benefits of altruistic donations to transplant candidates who have willing donors. A Good Samaritan who wanted to give a kidney to a stranger could otherwise donate to someone on the waiting list for a deceased organ, although doing so would not start a chain. The wait for a deceased kidney can take years, and they typically do not function as well or survive as long. There is a racial dimension because African-Americans, who have high rates of kidney disease, are underrepresented among those with willing donors and overrepresented on the waiting list for cadaver kidneys. Researchers point to a variety of possible reasons: lower incomes, lower rates of insurance coverage and less access to high-level care; fewer suitable donors because of the prevalence of diabetes and hypertension; and perhaps a cultural reluctance to ask family members to donate. In the record-setting transplant chain completed in December by the National Kidney Registry, 2 of 30 recipients were black, compared with a third of those on the deceased donor waiting list. The registries argue that every live donation shortens the wait list and thus indirectly benefits those seeking a deceased organ. Some registries end chains by donating the final kidney to someone on the wait list. Kidney chains are new enough that doctors and mathematicians continue to debate their ideal length. Ethicists like Dr. Bramstedt caution that safety must not be compromised in the quest to build ever-longer chains, say by making matches that risk rejection. A related question concerns the handling of so-called bridge donors, who may be required for scheduling reasons to donate weeks or months after their loved ones have already received transplants. The longer a bridge donor waits, the higher the risk that he or she will renege or develop a disqualifying medical problem. Over its four-year history, 7 of the National Kidney Registry’s 174 bridge donors have backed out, although none did in 2011. Some argue there should be time limits for bridge donors, followed by a requirement that they donate to the waiting list. This would ensure that the bridge donor’s kidney finds a needy recipient, even at the cost of ending a chain. Authorities on transplantation also see a need for uniform standards for screening Good Samaritan donors and for making sure that all donors consent freely, do not receive compensation and get appropriate medical care. They worry that people who are asked to donate for a chain are particularly susceptible to coercion because the number of potential beneficiaries may make it difficult to say no. And they debate how long live kidneys should be transported, and whether registries should charge fees. Groups like Mr. Hil’s answer to no one on questions like these, although he does consult regularly with a respected medical board for guidance. Many transplant surgeons, nurses and coordinators believe the clear answer is to create a single registry controlled by the United Network for Organ Sharing, the nonprofit group that manages the deceased donor waiting list for the federal government. But they also acknowledge that the network is slow-moving and deliberative in an entrepreneurial world. Its paired exchange pilot project has arranged but 17 transplants since late 2010, and it runs its matchmaking software only once a month; Mr. Hil’s registry, which makes match runs five days a week, tallied 175 transplants in 2011. Richard Durbin, director of transplantation with the Health Resources and Services Administration, said the agency had made no decisions about establishing a single government-run agency. Mr. Hil suggested there was no need to build a single group, because he had already done so. “We have a national pool,” he said. “It’s called the National Kidney Registry.” http://www.nytimes.com/2012/02/19/health/lack-of-unified-system-hampers-kidney-transplants.html? _r=1&pagewanted=all NYTIMES: 60 Lives, 30 Kidneys, All Linked « on: February 19, 2012, 09:57:37 AM » 60 Lives, 30 Kidneys, All Linked National Kidney Registry's 30-way swap completed in December, written by two time Pulitzer Prize winning journalist, Kevin Sack. By KEVIN SACK Published: February 18, 2012

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RIVERSIDE, Calif. — Rick Ruzzamenti admits to being a tad impulsive. He traded his Catholicism for Buddhism in a revelatory flash. He married a Vietnamese woman he had only just met. And then a year ago, he decided in an instant to donate his left kidney to a stranger. In February 2011, the desk clerk at Mr. Ruzzamenti’s yoga studio told him she had recently donated a kidney to an ailing friend she had bumped into at Target. Mr. Ruzzamenti, 44, had never even donated blood, but the story so captivated him that two days later he called Riverside Community Hospital to ask how he might do the same thing. Halfway across the country, in Joliet, Ill., Donald C. Terry Jr. needed a kidney in the worst way. Since receiving a diagnosis of diabetes-related renal disease in his mid-40s, he had endured the burning and bloating and dismal tedium of dialysis for nearly a year. With nobody in his family willing or able to give him a kidney, his doctors warned that it might take five years to crawl up the waiting list for an organ from a deceased donor. “It was like being sentenced to prison,” Mr. Terry recalled, “like I had done something wrong in my life and this was the outcome.” As a dawn chill broke over Chicago on Dec. 20, Mr. Terry received a plump pink kidney in a transplant at Loyola University Medical Center. He did not get it from Mr. Ruzzamenti, at least not directly, but the two men will forever share a connection: they were the first and last patients in the longest chain of kidney transplants ever constructed, linking 30 people who were willing to give up an organ with 30 who might have died without one. What made the domino chain of 60 operations possible was the willingness of a Good Samaritan, Mr. Ruzzamenti, to give the initial kidney, expecting nothing in return. Its momentum was then fueled by a mix of selflessness and self-interest among donors who gave a kidney to a stranger after learning they could not donate to a loved one because of incompatible blood types or antibodies. Their loved ones, in turn, were offered compatible kidneys as part of the exchange. Chain 124, as it was labeled by the nonprofit National Kidney Registry, required lockstep coordination over four months among 17 hospitals in 11 states. It was born of innovations in computer matching, surgical technique and organ shipping, as well as the determination of a Long Island businessman named Garet Hil, who was inspired by his own daughter’s illness to supercharge the notion of “paying it forward.” Dr. Robert A. Montgomery, a pioneering transplant surgeon at Johns Hopkins Hospital, which was not involved in the chain, called it a “momentous feat” that demonstrated the potential for kidney exchanges to transform the field. “We are realizing the dream of extending the miracle of transplantation to thousands of additional patients each year,” he said. The chain began with an algorithm and an altruist. Over the months it fractured time and again, suspending the fates of those down the line until Mr. Hil could repair the breach. Eventually, he succeeded in finding needle-in-a-haystack matches for patients whose antibodies would have caused them to reject organs from most donors. Until now, few of the donors and recipients have known one another’s names. But 59 of the 60 participants consented to be identified by The New York Times and to tell the stories, each with distinct shadings, that ultimately connected them. Despite an intensely bitter breakup, a Michigan man agreed to donate a kidney for his former girlfriend for the sake of their 2-year-old daughter. A woman from Toronto donated for her fifth cousin from Bensonhurst, Brooklyn, after meeting him by chance in Italy and then staying in touch mostly by text messages. Children donated for parents, husbands for wives, sisters for brothers. A 26-year-old student from Texas gave a kidney for a 44-year-old uncle in California whom he rarely saw. In San Francisco, a 62-year-old survivor of Stage 4 Hodgkin’s lymphoma donated for her son-in-law. On Aug. 15, Mr. Ruzzamenti’s kidney flew east on a Continental red-eye from Los Angeles to Newark and was rushed to Saint Barnabas Medical Center in Livingston, N.J. There it was stitched into the abdomen of a 66-year-old man. The man’s niece, a 34-year-old nurse, had wanted to give him her kidney, but her Type A blood clashed with his Type O. So in exchange for Mr. Ruzzamenti’s gift, she agreed to have her kidney shipped to the University of Wisconsin Hospital in Madison for Brooke R. Kitzman’s transplant. It was Ms. Kitzman’s former boyfriend, David Madosh, who agreed to donate a kidney on her behalf despite their acrimonious split. Mr. Madosh’s kidney flew to Pittsburgh for Janna Daniels, a clerical supervisor, who got her transplant at Allegheny General Hospital. And her husband, Shaun, a mechanic, sent his kidney to Mustafa Parks, a young father of two at Sharp Memorial Hospital in San Diego.

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On and on the chain extended, with kidneys flying from coast to coast, iced down in cardboard boxes equipped with GPS devices and stowed on commercial aircraft. In a system built on trust, one leap of faith followed another. The burdens of scheduling operations all across the country — so donors would not have to travel — meant that operations were not always simultaneous, or even sequential. The most worrisome risk was that donors would renege once their loved ones received kidneys. After John A. Clark of Sarasota, Fla., got a transplant on Sept. 28 at Tampa General Hospital, his wife, Rebecca, faced a 68-day wait before it was her turn to keep the chain going. Ms. Clark said that it crossed her mind to back out, but that she swatted away the temptation. “I believe in karma,” Ms. Clark said, “and that would have been some really bad karma. There was somebody out there who needed my kidney.” An Organ to Spare It is considered a quirk of evolution that humans have two kidneys when they need only one to filter waste and remove excess fluid from the body. Yet when kidneys fail, whether from diabetes or high blood pressure or genetic disorders, they tend to fail in tandem. Death can arrive in a matter of weeks for many renal patients if they do not have their blood cleansed through dialysis. The process takes almost four hours, three times a week, and leaves many too drained to work. Only half of dialysis patients survive more than three years. Many of the 400,000 Americans who are tethered to dialysis dream of a transplant as their pathway back to normal. But with the demand for kidneys rising faster than the number of donors, the waits have grown longer. While about 90,000 people are lined up for kidneys, fewer than 17,000 receive one each year, and about 4,500 die waiting, according to the United Network for Organ Sharing, which maintains the wait list for the government. Only a third of transplanted kidneys come from living donors, but they are coveted because they typically last longer than cadaver kidneys. For kidneys transplanted in 1999, 60 percent of organs from live donors were still functioning after 10 years, compared with 43 percent of organs from deceased donors. Although other living tissue can be transplanted — slices of pancreas, liver and intestine, bone marrow and lobes of lung — kidneys are uniquely suited because donors have a spare and the operations are almost always successful. A reason there are not more live kidney donations, however, is that about a third of transplant candidates with a willing donor find that they are immunologically incompatible. Some, because of previous transplants, blood transfusions or pregnancies, may have developed antibodies that make them highly likely to reject a new kidney. Using a blood-filtering technique known as plasmapheresis, doctors can now lower the odds that a recipient will reject an incompatible kidney. But the procedures are taxing and expensive. Domino chains, which were first attempted in 2005 at Johns Hopkins, seek to increase the number of people who can be helped by living donors. In 2010, chains and other forms of paired exchanges resulted in 429 transplants. Computer models suggest that an additional 2,000 to 4,000 transplants could be achieved each year if Americans knew more about such programs and if there were a nationwide pool of all eligible donors and recipients. Such transplants ultimately save money as well as lives. The federal Medicare program, which pays most treatment costs for chronic kidney disease, saves an estimated $500,000 to $1 million each time a patient is removed from dialysis through a live donor transplant (the operations typically cost $100,000 to $200,000). Coverage for kidney disease costs the government more than $30 billion a year, about 6 percent of the Medicare budget. Dialysis, which in the United States is almost always administered in outpatient clinics, saps the productivity of caregivers as well as of patients. Nearly two years ago, Kent Bowen, 47, of Austin, Tex., gave up his job hanging gutters, and much of his freedom, so he could provide dialysis at home to his mother, Mary Jane Wilson. Before donating a kidney for her as part of the chain on Dec. 7 at Methodist Hospital in Houston, Mr. Bowen said he looked forward not only to helping his mother, but also to a long-deferred fishing trip. “In all actuality,” he said, “giving a kidney is a small price to pay for getting my life back.” Understanding the Pain

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Garet Hil and his wife, Jan, may never fully recover from the snowy night in February 2007 when they took their 10¬year-old daughter in with flu symptoms and emerged with a shocking diagnosis of nephrophthisis, a genetic kidney-wasting disease. They could not imagine sacrificing her youth to dialysis. Because Mr. Hil and his daughter shared the same blood type, he assumed he would be able to give her one of his kidneys. But two days before surgery, doctors canceled the operations after discovering that his daughter had developed antibodies that would most likely cause rejection. Jan Hil and six other family members volunteered but were also ruled out. Mr. Hil and his daughter joined several of the registries that had started to arrange kidney exchanges, but the pools were small and they never found a match. Fortunately, one of Mr. Hil’s nephews then was tested and was able to donate. After the successful transplant, Mr. Hil, a veteran business executive, could not shake his frustration that a more effective registry for paired kidney donation did not exist. “The exchange systems out there weren’t industrial strength,” he said. By the end of 2007, the Hils had formed the National Kidney Registry and rented office space in an old clapboard house in Babylon, N.Y. The couple invested about $300,000 to start it, and Mr. Hil, who is now 49, ran the registry without a salary. “The goal was very simple: get everybody transplanted in under six months if you had a living donor,” he said. “One of the things that drove us was the enormity of the problem. The other thing that drove us was that we understood the pain of being in that situation.” Mr. Hil turned out to be the right person to infuse the budding science of kidney exchange with an entrepreneurial spark. A former Marine reconnaissance ranger with an M.B.A. from the Wharton School, he had managed a series of data and logistics companies in Boston and New York and understood the worlds of both computing and finance. He had made his money and could step off the career track to give the registry his time and the resources of his software-consulting firm. He had a background in quantitative math and enough drive to plow through medical texts about organ compatibility. Over time, he led a team in designing sophisticated software that evolved to build ever-longer chains. Disney-hero handsome, with a cleft chin and thick wavy hair, Mr. Hil marketed his registry to hospitals with PowerPoints and passion. The transplant world initially regarded him as an interloper. But he has now persuaded 58 of the country’s 236 kidney transplant centers, including many of the largest, to feed his database with information about pairs of transplant candidates and their incompatible donors. Starting at 5 a.m. each workday, Mr. Hil manipulates several hundred pairs into transplant chains with a few clicks of a mouse. Last year, he arranged 175 transplants this way, including the 30 in Chain 124, more than any other registry. On average, patients received transplants about a year after being listed. The same year that Mr. Hil’s daughter got sick, Congress amended the National Organ Transplant Act to clarify that paired exchanges do not violate federal laws against selling organs. The blessing from Washington broke down resistance in many hospitals just as the National Kidney Registry was opening for business. The Evolving Chain Although the first live kidney was transplanted in 1954 in Boston, three decades passed before a Stony Brook University surgeon named Felix T. Rapaport first theorized about kidney swaps in a 1986 journal article. Korean surgeons completed the first exchanges in 1991, but they were not successfully attempted in the United States for nearly another decade. Simple swaps among two pairs, with the operations performed at the same hospital on the same day, quickly evolved into complex exchanges among three pairs and then four and then six. Then in 2007, a transplant surgeon at the University of Toledo Medical Center, Dr. Michael A. Rees, had a forehead-slapping insight. If an exchange began with a Good Samaritan who donated to a stranger, and if the operations did not have to be simultaneous, a chain could theoretically keep growing, limited only by the pool of available donors and recipients. Dr. Rees reported in 2009 that he had strung together a chain of 10 transplants. Mr. Hil seized on the idea and set out to build an algorithm that would enable even more transplants. Nowadays, his pool typically consists of 200 to 350 donor-recipient pairs. That is enough to generate roughly a googol — 10 to the 100th power — of possible chains of up to 20 transplants if all of the pairs are compatible, said Rich Marta, the registry’s senior software designer.

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The program quickly eliminates matches that will not work because of incompatible blood types or antibodies, or because a transplant candidate insists that a donor be under a certain age or a close immunological match. It then assembles up to a million viable combinations at a rate of 8,000 per second. The algorithm ranks the possible combinations by the number of transplants they would enable, with weight given to chains that find kidneys for hard-to-match patients and those who have waited a long time. There are several registries like Mr. Hil’s, each with a distinct approach. Largely unregulated by government, they invite sensitive questions about oversight and ethics, including how kidneys are allocated. A number of medical societies are convening in March to seek consensus on that and other issues related to paired exchanges. Mr. Hil knows the patients in his pool only by code names and leaves all personal interactions to the hospitals. He keeps several chains running at a time, and says tending to them is like playing three-dimensional chess. Chain 124 even included one pair that was immunologically compatible. Josephine Bonventre, a 40-year-old real estate agent from Toronto with Type O blood, could have donated a kidney directly to her fifth cousin, Cesare Bonventre, a 27-year-old tile worker from Brooklyn with Type B. But a second level of matching requires the synching of six antigens, a series of proteins that determine compatibility. By joining the chain and donating down the line, on Dec. 6 at NewYork-Presbyterian Hospital, Josephine enabled Cesare to get a stronger match — three antigens instead of one. Her donation as a valued Type O then set off the final 11 transplants. The registry did not charge transplant centers for its services until 2010, when Mr. Hil imposed fees to help cover costs. Hospitals now pay membership dues and a charge of $3,000 per transplant that is reimbursed by many private insurers but not by Medicare. The transplant recipients must be insured. Each year, the registry’s chains have grown longer, with Chain 124 topping the previous record by seven transplants. “We’ve just scratched the surface,” said Mr. Hil, who wears gold kidney-shaped cufflinks. Long transplant chains save more lives than short chains. But they come with trade-offs because the longer they grow, the higher the risk that a donor will renege or that a link will break for other reasons. The record-breaking chain survived its share of logistical setbacks. On Aug. 29, after the first five transplants, Mr. Hil lost a link because a donor could not take the necessary two to four weeks away from work. Later that day, he lost another when a transplant coordinator informed him that a potential recipient was an illegal immigrant and therefore could not be covered by Medicare. In late October, an entire segment fell apart when a donor at California Pacific Medical Center in San Francisco backed out for unexplained “personal reasons.” It was as if one domino had fallen short of the next, leaving those still standing frozen in place. “This makes us all sick,” Dr. Steven Katznelson e-mailed Mr. Hil. “We did not see this coming.” “Wow,” Mr. Hil wrote back. The donor “just put 23 patients at risk.” The dependency of each link on the others kept patients on edge. “Things can happen,” Candice Ryan fretted a few days before her Dec. 5 transplant at Massachusetts General Hospital. “You just pray that everything goes well. I can’t relax until I’m asleep and on the table.” Depending on the makeup of his registry at any moment, Mr. Hil likes to stretch his chains as long as reasonable and then end them if a donor is difficult to match or if one chain is draining others of potential transplants. He does so by arranging for the final kidney to go to a fortunate transplant candidate like Mr. Terry who does not have a willing donor. The Initial Link Until recently, hospitals regularly turned away Good Samaritan donors on the working assumption that they were unstable. That has changed somewhat with experience. But when Rick Ruzzamenti showed up at Riverside Community Hospital asking to give a kidney to anyone in need, he still underwent rounds of psychological screening as well as medical tests.

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The doctors and social workers did not know what to make of Mr. Ruzzamenti at first. He had a flat affect and an arid wit, and did not open up right away. As the hospital’s transplant coordinator, Shannon White, pressed him about his motivations and expectations, he explained that h is decision seemed rather obvious. “People think it’s so odd that I’m donating a kidney,” Mr. Ruzzamenti told her. “I think it’s so odd that they think it’s so odd.” The hospital wanted to make sure that he was not expecting glory, or even gratitude. Mr. Ruzzamenti stressed that no one should mistake him for a saint. He had, after all, been a heavy drinker in his youth and had caroused his way through the Navy. He could be an unsmiling presence at work, where he helped manage a family electrical contracting business. He admitted that he did not visit his parents or grandmother enough. Despite his occasional surliness, Mr. Ruzzamenti said he felt driven to help others when possible. And as he considered the relative risks and benefits of organ donation, particularly to relieve a whole chain of suffering, it just made so much sense. “It causes a shift in the world,” he said. Perhaps, he said, there was some influence from a Tibetan meditation he had practiced when he was first drawn to Buddhism six years ago. It is known as Tonglen. “You think of the pain someone’s in, and imagine you take it from them and give them back good,” he said. Mr. Ruzzamenti said he was in a position to donate only because the economy had dried up so much of his work. He was essentially unemployed and could take time off to recuperate. The 30 kidney recipients, he observed dryly, could “all thank the recession.” When Mr. Ruzzamenti told his wife, My Nhanh, about his plans, she made it abundantly clear, despite her rudimentary English, that she would leave him and return to Vietnam if he followed through. She had immigrated only eight months before, after a marriage largely arranged by the Buddhist temple where Mr. Ruzzamenti volunteered as a groundskeeper. If he died on the table, she demanded, how would she get by in a country where she felt so out of place? “I wanted to scare him,” Ms. Ruzzamenti, who is known as Lucy, said as she combed her husband’s close-cropped hair with her fingers. “And to tell him that it scares me.” Mr. Ruzzamenti was impressed by his petite wife’s ferocity — “She’s a bully,” he said — but he disregarded her threat. He knew research showed that the risk of death from kidney retrieval surgery was 3 in 10,000 and that people with one kidney live as long as those with two. To him, there was little doubt that any good he created would far outweigh any temporary discomfort to him or his wife. As it happened, Mr. Ruzzamenti experienced an unusual level of pain during his recuperation at Riverside. It sometimes left him balled up in agony, and the Demerol only made him hallucinate. He did not really want company. But when the pain stirred him awake at night, he could see Lucy sleeping in the hospital bed beside his. Acts of Devotion There were other love stories along the way. Gregory Person and Zenovia Duke, both now 38, had been junior high prom dates in 1987 in Astoria, Queens. They lost touch and then reconnected on Facebook after each had divorced. They saw each other occasionally, but he lived in Queens and she near Albany, so the relationship never got serious. Not long after they reconnected, Mr. Person’s half-sister died of kidney failure and he pledged to help someone else beat the disease if ever given the chance. Then Ms. Duke learned she needed a transplant. On Aug. 31, Ms. Duke received a kidney from a woman in California and Mr. Person sent his to Ohio. As they recuperated at NewYork-Presbyterian , Mr. Person found himself regularly hobbling down to her room. Once they were both back on their feet, they started dating more regularly. “I’ve never had any person in my life actually do what they say they’re going to do,” Ms. Duke said, “especially men. It spoke volumes that he was a man of his word.” It was a different kind of devotion that led David Madosh, 47, to donate a kidney for Brooke Kitzman, 30. Their four-year relationship, which had produced a 2-year-old daughter, soured just as he was getting tested as a potential donor. The breakup, caused partly by the strains of her illness, was ugly enough that when Ms. Kitzman later matched to become part of the chain, she put the odds at no better than 50-50 that Mr. Madosh would still donate. But Mr. Madosh, who lost his mother when he was 5, did not want his daughter, Elsie, to lose hers.

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The youngest of 12 children, he said he had been passed from one foster home to the next, eight in all, some that he described as little more than labor camps. “I don’t want my daughter to have to experience that,” said Mr. Madosh, a tree cutter by trade. “No matter what it takes, a daughter needs her mother.” Ms. Kitzman said she was grateful for Mr. Madosh’s kidney, and had told him so when they visited in a hospital corridor. But both made it clear that his act of charity had barely eased the tension between them. Mr. Madosh said he took satisfaction enough from seeing Elsie at play with her re-energized mother. “When her mama comes to get her, and she gives her hugs and kisses, that’s it right there,” he said. A Wish Come True On Dec. 19, Chain 124 hurtled toward its conclusion with a final flurry of procedures at Ronald Reagan U.C.L.A. Medical Center in Los Angeles. Between dawn and dusk, three kidneys were removed and three were transplanted in neighboring operating rooms. One flew in from San Francisco. The last took off for O’Hare. At the end of the cluster were Keith Zimmerman, 53, a bearish, good-humored man with a billy-goat’s beard, and his older sister, Sherry Gluchowski, 59. She had recently moved from California to Texas but returned to donate her kidney. The siblings had always been close, although family members marveled at their ability to bicker for 15 minutes over the proper way to construct a peanut butter sandwich. Their mother, Elsa Rickards, remembered teaching them as children “that they might not have their mommy and daddy all the time, but they will always have each other.” Mr. Zimmerman, who runs a repossession firm with his wife in Santa Clarita, had been given a diagnosis of kidney disease 25 years ago. With the help of a nutritionist, he had managed to avoid dialysis until the very last day before his transplant, when his doctor said the procedure was needed to clear his body of excess fluid. In his hospital room before surgery, with seven family members shoehorned into every nook, Mr. Zimmerman calmed his nerves by listening to Aaron Neville on his iPod. He said he considered himself “the lottery winner” in the chain because his kidney would be coming from a healthy 28-year-old, Conor Bidelspach of Bend, Ore. The surgery to remove a kidney, known as a nephrectomy, is remarkably bloodless these days. With Mr. Bidelspach on the table, Dr. Peter G. Schulam cut four dime-sized incisions on the left side of the abdomen. Through tubes inserted in the openings, the surgeon and his team maneuvered their cauterizing scalpels and a laparoscopic camera, which relayed images of Mr. Bidelspach’s insides to monitors overhead. The scalpel’s super-heated pincers clamped down like crab claws, searing the kidney from surrounding tissue. There was no need to cut any muscle. Once the kidney was free of connective tissue, Dr. Schulam clamped and snipped the renal artery and vein and ureter. He captured the kidney in a plastic bag, cinched it shut, and withdrew it quickly through a finger-length incision along the pelvic line. The doctor poured the kidney into a bowl of ice and drained it of remaining blood. The slush in the blue bowl turned fruit-punch pink. As others stitched up Mr. Bidelspach, Dr. Schulam wheeled the kidney on a cart into an adjoining operating room, where Mr. Zimmerman was already anesthetized. After stretching a hole in Mr. Zimmerman’s midsection with a metal retractor, Dr. Jeffrey L. Veale lowered the kidney into place and sewed in the renal artery and vein. As soon as he unclamped them, the kidney pinked up with blood flow. Before attaching the ureter to the bladder, he gently massaged the tip of the narrow tube between two fingers and watched it spurt a few drops of urine. “No more dialysis for Mr. Zimmerman,” Dr. Veale declared. “This total stranger’s kidney is making him pee.” He left Mr. Zimmerman’s own kidneys to shrivel harmlessly in place (removing them would add to surgical risk). Meanwhile, Dr. Schulam was in yet another operating room removing Ms. Gluchowski’s kidney. He placed it in a plastic bag filled with a preservative solution and knotted it shut, like a goldfish brought home from the pet store. It was packed in a plastic tub, topped with ice, and loaded into a cardboard box marked “Left Kidney — Donated Human Organ/Tissue for Transplant — Keep Upright.”

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A courier in one of Quick International’s big red vans drove Sherry Gluchowski’s kidney through stop-and-go traffic on Interstate 405 to the Los Angeles airport. Cynthia Goff, an operations supervisor for the courier company who had volunteered to accompany the kidney to Chicago, rolled the box into the terminal strapped atop her carry-on with a bungee cord. A pit bull, waiting to be placed in its travel kennel, strolled by and sniffed. After security agents checked the box with a desktop scanner, Ms. Goff rolled the kidney down the concourse, past a currency exchange and a store selling Elmo dolls for Christmas. Escorted onto United 564, an overnight flight that would land in Chicago at 5 a.m., she stowed the box in the business-class closet, next to a flight attendant’s overcoat. Airplanes carrying donor organs are granted special status, allowing them to move to the front of takeoff lines and ahead of air traffic. Mr. Hil, who tries to avoid routing kidneys on connecting flights and always schedules backups, said none of his registry’s transplants had been held up by transportation problems. By the time Ms. Gluchowski’s kidney made it to Loyola and was transplanted into Mr. Terry, it had been cold for almost 12 hours. Early studies have found no evidence that shipping live kidneys such distances affects their immediate function. Chain 124 ended at Loyola because Mr. Hil had arranged for the final kidney to go to a hospital that had produced a Good Samaritan donor to start a chain in the past, thus closing a loop. Dr. John Milner, a transplant surgeon at Loyola, said he then selected Mr. Terry to receive the kidney because he was the best immunological match on the hospital’s wait list. When Dr. Milner called with the news in early December, Mr. Terry was floored at his remarkable good fortune. Having felt unfairly condemned when he was first placed on dialysis, he now wondered what he had done to deserve a gift that 90,000 others needed just as much. As it sank in that his would be the last of 30 interconnected transplants, Mr. Terry began to feel guilty that he would be ending the chain. “Is it going to continue?” he asked Dr. Milner. “I don’t want to be the reason to stop anything.” “No, no, no,” the doctor reassured him. “This chain ends, but another one begins.” http://www.nytimes.com/2012/02/19/health/lives-forever-linked-through-kidney-transplant-chain-124.html? _r=2&pagewanted=all Logged Penny Wise, Pound Foolish? Coverage Limits on Immunosuppression after Transplant « on: February 05, 2012, 08:18:56 PM » Penny Wise, Pound Foolish? Coverage Limits on Immunosuppression after Kidney Transplantation John S. Gill, M.D., and Marcello Tonelli, M.D. February 1, 2012 (10.1056/NEJMp1114394) ArticleReferences As a treatment for end-stage renal disease (ESRD), kidney transplantation is superior to dialysis for improving patient survival rates and quality of life. Its long-term success, however, requires ongoing treatment with immunosuppressive drugs. Ironically, although many of the pivotal discoveries related to immunosuppression have been made in the United States, U.S. kidney-transplant recipients do not benefit from a coherent funding policy for these drugs, and thousands of such patients are therefore at risk for allograft failure and premature death. Ensuring lifetime access to these medications for all Americans with kidney transplants would save lives as well as reduce the total cost of treating patients with ESRD. Under current Medicare rules, coverage for immunosuppressive drugs abruptly ceases 3 years after kidney transplantation for all Medicare patients, except those who are 65 years of age or older or have work-related disabilities. This policy differs from those of other industrialized countries, including Australia, the United Kingdom, and Canada, where lifetime, state-funded coverage of immunosuppressive drugs is provided to all kidney-transplant recipients — and where long-term survival rates are substantially higher than those in the United States (see table Kidney-Transplant Survival and Immunosuppressive Coverage Policies for Selected Countries (for Recipients of a First Kidney-Only Transplant from a Deceased Donor). ), notwithstanding differences in patient case mix, sociodemographic characteristics, and other factors. These observations suggest that it is time to reexamine the funding practices for immunosuppressive medications in the United States. The lack of funding for essential immunosuppressants for many Medicare patients also contrasts sharply with Medicare's provision of funding for lifelong dialysis. Although it is a lifesaving treatment for kidney failure, dialysis produces poorer outcomes than transplantation and is far more expensive on a yearly basis than immunosuppressant regimens. Yet patients must revert to this more costly and less effective treatment when their renal allografts fail. Although the decision not to provide lifetime coverage for immunosuppressive drugs might once have been justified by the hope that transplantation would improve the health and

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earning power of patients with kidney failure, allowing them to obtain private insurance, this optimism is not borne out by the current reality. Premature transplant failure is the fifth leading cause of initiation of dialysis in the United States. Unfortunately, approximately 25% of patients whose transplants fail die within 2 years after returning to dialysis. This outcome is worse than the 2-year mortality among patients with a functioning transplant from a deceased donor (6%) and still worse than that among age-matched dialysis patients who have never received a transplant (20%). A second transplant is the best treatment option for a patient whose transplant has failed, but the opportunities for repeat transplantation are much more limited than those for initial transplantation. Candidates for repeat transplantation account for about 20% of patients on the waiting list but (because of sensitization from their failed allograft) receive only 12% of the deceased-donor kidneys transplanted annually in the United States. Transplant failure can result directly from nonadherence to immunosuppressive regimens, which in turn may be due to inability to pay. Although clinically obvious, the link between allograft failure and nonadherence is difficult to confirm on the basis of prospective research, because transplant recipients are unlikely to admit to poor adherence, fearing that it will reduce their chances of repeat transplantation.1 However, qualitative surveys of kidney-transplant recipients do confirm the high economic burden of paying for immunosuppressive regimens, especially among the socioeconomically disadvantaged.2 In a 2010 survey, more than 70% of U.S kidney-transplantation programs reported that their patients had an “extremely serious” or “very serious” problem paying for immunosuppressive medications, and 68% reported deaths and graft losses attributable to cost-related nonadherence. Medicare-insured patients have a greater risk of kidney-transplant failure than privately insured patients who have lifelong coverage for immunosuppressant regimens, and the gap increases significantly when Medicare patients' drug coverage expires after 3 years (see graphs Renal Allograft Survival as a Function of Insurer Status in the United States. and the Supplementary Appendix, available with the full text of this article at NEJM.org). This finding supports the hypothesis that cost-related nonadherence to immunosuppressive regimens is an important cause of kidney-transplant loss. Mandating lifetime drug coverage could improve adherence and thus lessen the need for more costly dialysis treatment or a second transplant. The financial benefit of lifelong immunosuppressive therapy is apparent when one examines the costs of ESRD treatment options. An initial kidney transplantation is expensive, costing Medicare an average of approximately $110,000; immunosuppressive medications cost about $15,000 to $20,000 annually (perhaps substantially less if generic alternatives are available). Although the cost of maintaining an allograft is considerable, it should be compared with the approximate annual cost of $75,000 for establishing and maintaining dialysis treatment in the case of allograft failure, as well as with the cost of repeat transplantation in suitable candidates. Since patients with kidney failure need either long-term dialysis or a functioning renal allograft to survive, failing to pay for ongoing immunosuppression ensures that Medicare's initial investment in kidney transplantation is squandered, that patients die prematurely, and that U.S. taxpayers pay for a more expensive but inferior therapy after some transplants fail unnecessarily. The potential for cost savings through lifetime drug coverage is supported by empirical data. Between 1993 and 1995, Medicare extended its funding of immunosuppressive medications after kidney transplantation from 1 year to 3 years. This modest extension, albeit suboptimal, reduced costs and income-related disparities in outcomes among kidney-allograft recipients. The subsequent lifetime provision made in 2000 for Medicare patients who are 65 years of age or older or have work-related disabilities has been associated with additional reductions in such disparities.3 Unsurprisingly, economic analyses also confirm that providing lifetime funding for immunosuppressive medications would lower overall costs — saving an estimated $200 million annually — with the greatest impact seen among patients least able to pay.4 Perhaps a more compelling argument in favor of lifelong immunosuppressant drug coverage is that transplantable kidneys are lifesaving gifts made possible by living donors or by families of deceased persons and are of immeasurable benefit to society. Current U.S. policy devalues this gift, potentially jeopardizing the U.S. organ-donation system by discouraging volunteers. Providing lifelong immunosuppressive drug coverage could help preserve this altruistic tradition. The Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2011 (H.R. 2969), currently before Congress, is a proposed amendment to the Social Security Act that would grant lifelong coverage for immunosuppressive medications to all kidney-transplant recipients in the United States. A similar legislative effort made in 2009 failed after Congress indicated that funds allocated to lifetime immunosuppressive coverage would reduce the resources available for funding oral medications for dialysis patients.5 But it is not rational to treat lifetime immunosuppressive coverage as a new expense that would cut into other programs, given that this simple policy change would actually reduce net expenditures for ESRD care.

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H.R. 2969 represents a key opportunity to correct an irrational, needlessly wasteful policy that has harmed many U.S. patients. Its passage would achieve three important objectives: protect Medicare's investment in each renal allograft, help bring U.S. kidney-transplant outcomes up to par with those in other developed countries, and most important, save the lives of people with kidney failure. Disclosure forms provided by the authors are available with the full text of this article at NEJM.org. This article (10.1056/NEJMp1114394) was published on February 1, 2012, at NEJM.org. SOURCE INFORMATION From the Division of Nephrology, University of British Columbia, Vancouver (J.S.G.); the Division of Nephrology, University of Alberta, Edmonton (M.T.); and the Interdisciplinary Chronic Disease Collaboration, Calgary, AB (J.S.G., M.T.) — all in Canada. http://www.nejm.org/doi/full/10.1056/NEJMp1114394 Logged ~Karol 21 yr. old daughter on dialysis 2003-2007. TRANSPLANT FROM LIVING DONOR 1/16/07! her story ---> http://www.caringbridge.org/visit/jennafranks Living Donors Rock! http://www.livingdonorsonline.org - News video: http://www.youtube.com/watch?v=J¬7KvgQDWpU fearless Full Member Offline Posts: 330 Re: Penny Wise, Pound Foolish? Coverage Limits on Immunosuppression after Transplant « Reply #1 on: February 05, 2012, 11:46:31 PM » Lobby your representatives my friends!!! This is a chance for us to have a voice on something that will effect us directly and profoundly. Thank you for the post. Logged jdwills83 Jr. Member Offline Gender: Posts: 61 LOVE will fix ANYTHING. Re: Penny Wise, Pound Foolish? Coverage Limits on Immunosuppression after Transplant « Reply #2 on: February 06, 2012, 01:00:29 AM » You can sign up on www.popvox.com to write your representative and support H.R. 2969 Logged okarol Administrator/Owner Member for Life Offline Gender: Posts: 28788 Jenna - 18 mo. old - after Disneyland Re: Penny Wise, Pound Foolish? Coverage Limits on Immunosuppression after Transplant « Reply #3 on: February 06, 2012, 02:32:12 AM » I am confused. I thought that the insurance changes put forth through Obamacare would take care of this - as there would be no more pre-existing conditions and everyone would be covered. Would transplant patients be excluded? Logged ~Karol 21 yr. old daughter on dialysis 2003-2007. TRANSPLANT FROM LIVING DONOR 1/16/07! her story ---> http://www.caringbridge.org/visit/jennafranks Living Donors Rock! http://www.livingdonorsonline.org - News video: http://www.youtube.com/watch?v=J¬7KvgQDWpU MooseMom Premium Member Member for Life Offline Gender: Posts: 5913 Re: Penny Wise, Pound Foolish? Coverage Limits on Immunosuppression after Transplant « Reply #4 on: February 06, 2012, 02:40:11 AM »

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Okarol, it is my understanding that the bulk of the Affordable Care Act won't be implemented until 2014, but even then, I don't know if this specific issue will be addressed. I'm sure someone around here knows. Logged "Empathy is the soul of democracy." Jeremy Rifkin fearless Full Member Offline Posts: 330 Re: Penny Wise, Pound Foolish? Coverage Limits on Immunosuppression after Transplant « Reply #5 on: February 14, 2012, 08:55:31 PM » If you have insurance then it's possible it would be covered. But lots of us depend on Medicare D for our Rx coverage. Logged KarenInWA Premium Member Sr. Member Offline Gender: Posts: 558 Re: Penny Wise, Pound Foolish? Coverage Limits on Immunosuppression after Transplant « Reply #6 on: February 14, 2012, 11:23:50 PM » Which brings up another good question about the Healthcare Reform Act - how are prescription medications covered? I know my Rx coverage is handled by a company that is separate from my health insurance. Or so it seems. I find the whole thing confusing!!! KarenInWA Logged Just an unhappy pappy Re: Penny Wise, Pound Foolish? Coverage Limits on Immunosuppression after Transplant « Reply #7 on: February 18, 2012, 10:59:27 AM » Quote from: okarol on February 06, 2012, 02:32:12 AM I am confused. I thought that the insurance changes put forth through Obamacare would take care of this - as there would be no more pre-existing conditions and everyone would be covered. Would transplant patients be excluded? We had a discussion about this awhile back: http://ihatedialysis.com/forum/index.php?topic=18225.0 Unless something has changed the following from PNHP still worries me: "Millions of middle-income people will be pressured to buy commercial health insurance policies costing up to 9.5 percent of their income but covering an average of only 70 percent of their medical expenses, potentially leaving them vulnerable to financial ruin if they become seriously ill. Many will find such policies too expensive to afford or, if they do buy them, too expensive to use because of the high co-pays and deductibles." http://pnhp.org/news/2010/march/pro-single-payer-doctors-health-bill-leaves-23-million-uninsured Looks to me, having transplant meds covered separately would be a very good idea. Expanding the Renal Transplant Donor Pool: How Far is too Far? « on: February 12, 2012, 11:49:19 PM » Saturday, February 11, 2012 Expanding the Renal Transplant Donor Pool: How Far is too Far? By Peter Laird, MD The renal transplant waiting list in the United States continues to increase exponentially while the available living and deceased donors stagnates behind this growing demand as seen in this graph from the US Department of Health and Human Services HRSA. News accounts of fathers and mothers giving kidneys to their children make headlines on a routine basis. The news of the so called "gift of life" from renal transplant supersedes any like acknowledgement of nocturnal home hemodialysis which has outcomes equal to cadaveric transplant. Yet, the march to procure even more kidneys is leading America down the path of ethical quagmires as the demand continues to expand the donor pools by ever loosening criteria. A little over a decade ago, the solution for many was the new expanded donor criteria (ECD) where donors previously excluded as "marginal" for HTN, age, diabetes, risk of infectious disease transmission and or

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malignancy as well as other criteria are now grouped into the ECD category. Most transplant centers now offer shorter waiting times for patients who will agree to the ECD criteria by an informed consent agreement. Patients waiting for renal transplants faced with nearly ten years on the list now opt more frequently for expanded criteria donors making this the fastest growing segment of available renal donors. Another method of expanding the donor pool is a new criteria of death aside from the standard brain death criteria ushered in during the 1960's. In the 1990's, transplant centers began using donation by cardiac death (DCD) either by controlled DCD by withdrawing life sustaining care, or from uncontrolled emergency room cardiac deaths. Many ethicist have spoken out against this type of donation since the controlled donation by cardiac death occurs before brain death in some instances. Both ECD and DCD cadaveric transplants are increasing dramatically. Expanded donor criteria may in the end prove more costly for several reasons. First, ECD grafts must undergo extensive testing to assure that they are free of infectious agents easily transmitted by transplant and other tests that add to the direct costs of each transplant. In addition, because ECD and DCD grafts fail to last as long as standard criteria donors (SCD), transplant patients can expect more complications and difficulties with a new organ adding not only to the burden of care, but also the burden of further pain and suffering that these failures bring about. In my opinion, the most troublesome aspect of the expanded donor criteria is the inclusion of donors at high risk of transmissible agents including HIV and Hepatitis. Today, our testing cannot exclude all new cases of these viruses prior to the donor mounting an immune response to these agents which can take weeks in some cases. The feared transmission of HIV with this new criteria happened in 2007 leading many transplant surgeons to restrict the use of high infectious risk donors in their programs: High Infectious risk donors: what are the risks and when are they too high? RECENT FINDINGS: HRD organs are discarded at a higher rate than non-HRDs, and many surgeons have decreased the use of HRDs in response to a recent widely publicized case of HIV and hepatitis C virus (HCV) transmission. Special informed consent use can mitigate legal risk and might increase provider comfort with HRD utilization. Nucleic acid testing (NAT) mitigates infectious risk by decreasing the window period, particularly for HCV in which the risk of undetected window period infection decreases by an order of magnitude. Estimated risk of undetected window period HIV infection varies by HRD behavior category (range 0.035-4.9 per 10,000 donors when NAT is used), HCV risk is higher (range 0.027-32.4 per 10.000). SUMMARY: Given long waiting times and high wait list mortality, organs from HRDs can be used to expand the organ supply. Estimates of HRD infectious risk can be used to guide patient and provider decision making. Patients need to know and understand well all of the terms used in transplant programs today what the meaning of ECD and high risk donors (HRD) who include IV drug users, hemophiliacs, prostitution history, high risk sexual activity, exposure to HIV and jail sentencing. The CDC considers all of these donors high risk and following testing in transplant recipients for HIV and Hepatitis is now standard transplant follow up. The tragedy of four patients hoping for the gift of life in 2007 to only find out a new fatal disease is part of their medical fight should make us stop and consider how far is too far to expand donor criteria. The even more tragic sense of this epic story is that few patients are counseled that nocturnal home hemodialysis has the same survival benefit as cadaveric transplant. When seeking renal replacement treatment (RRT) options, the patient must realize that all treatment options are not equal especially when evaluating the use of extended donor criteria. The hope of "the gift of life" should not end tragically with a new disease added to their burden. For those that are willing to take these risks, then they must fully realize all of the criteria and all of the terms used. The "gift of life" may not be what it seems as time passes. I believe that America needs to return to a more sensible realization that the supply of available kidneys will not keep up with the exponential increase in demand for kidneys. I believe that the real hope for the majority of ESRD patients in America will be an expansion of home dialysis options. So far, the dialysis industry has done little to expand the pool of available home dialysis patients or reduce costs. It is time for a paradigm shift and return to optimal standards for all RRT options including renal transplant lest history record that we have expanded the criteria too far. http://www.hemodoc.com/2012/02/expanding-the-renal-transplant-donor-pool-how-far-is-too-far.html? utm_source=dlvr.it&utm_medium=twitter Troubling Trends with Blood Transfusions in Renal Transplant Candidates « on: February 12, 2012, 11:48:22 PM »

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Troubling Trends with Blood Transfusions in Renal Transplant Candidates By Peter Laird, MD Tuesday, February 07, 2012 Renal transplant is considered the gold standard renal replacement treatment for American ESRD patients. The longest living survivors of renal transplant such as Nancy Spaeth and Dr. Robin Eady defy the odds stacked against any person in with severe renal failure. The median survival once on dialysis is only 36-38 months depending on whether patients choose conventional in-center hemodialysis or peritoneal dialysis. (here) For those such as Nancy Spaeth and Dr. Eady, their survival since the original days of Dr. Scribner's Seattle program through today came about by a combination of hemodialysis, PD and renal transplantation. For long term survivors, multiple modalities and often successive transplants is common. Renal transplantation is complicated in patients with high levels of antibodies most often accumulated from multiple blood transfusions. The USRDS notes troubling trends in blood transfusions even in candidates for renal transplant where the transfusions can delay the hoped for transplant. Blood transfusions in kidney transplant candidates are common and associated with adverse outcomes Surprisingly, there are no data regarding transfusion frequency, factors associated with transfusion administration in patients on the kidney transplant waiting list, or transfusion impact on graft and recipient outcomes. We used United States Renal Data System data to identify 43,025 patients added to the waiting list in 1999-2004 and followed through 2006 to assess the relative risk of post-listing transfusions. In 69,991 patients who underwent transplants during the same time period, we assessed the association between pre-transplant transfusions and level of panel-reactive antibody (PRA) at the time of transplant, and associations between PRA and patient outcomes. The three-yr cumulative incidence of transfusions was 26% for patients added to the waiting list in 1999, rising to 30% in 2004. Post-listing transfusions were associated with a 28% decreased likelihood of undergoing transplant, and a more than fourfold increased risk of death. There was a graded association between percent PRA at the time of transplant and adjusted risk of death-censored graft failure, death with function, and the combined event of graft failure and death. These data demonstrate that transfusions remain common and confirm the adverse association between transfusions and PRA, and high PRA and inferior graft and patient outcomes. Delays while on the renal transplant list can be deadly, especially for those on conventional in-center hemodialysis or PD and not on daily home hemodialysis or nocturnal home hemodialysis which offers survival rivalling cadaveric transplant. (here and here) The issues of blood transfusions in dialysis patients is likely to become more prominent now that Hb parameters of dialysis patients has no minimum level. While the debate over the level of Hb needed for optimal quality of life remains unsettled except of course by patients themselves who know how they feel at each level, those with lower levels subject themselves to increased risks of transfusion under emergency blood loss. Dialysis patients have a high risk of bleeding from the stomach and intestines. The troubling trends that USRDS documents will continue. Patients as in most matters medical must become their own best advocates. Dr. Scribner believed that dialysis patients should know more about their disease than their doctors. The risks and benefits of EPO are well documented. Cardiovascular events and increased risk of cancer top the list. However, for someone contemplating renal transplant, the added burden of blood transfusions pushes the risk benefit analysis back into the direction of continued EPO use for those that need this support. I would hope that nephrologist would take these issues into consideration not only for those that have expressed interest in renal transplant, but also for those that may be a candidate in the future.

www.kamaldshah.com Wednesday, February 29, 2012 Today is Rare Disease Day I have atypical Hemolytic Uremic Syndrome (aHUS). In the US, there are only about 300 people who have this disease. Most of them are children. Adult aHUS is even more rare. I am not aware of any statistics in India. Fifteen years after I was first diagnosed, I am still waiting for a cure. Eculizumab, a very promising drug has shown very good results with this disease. I will need to get access to this drug (currently not available in India) and then undergo a kidney transplant to be able to have a good chance of a life without dialysis.

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Atypical HUS is what is officially called a 'rare disease'. Today, February 29th is Rare Disease Day, a day that comes rarely! Worldwide, people affected by one of the many rare diseases are commemorating the day and doing various things to improve awareness among the general population about rare diseases. There is a lot of work happening in the US and Europe in terms of lobbying with governments to improve support to find cures for rare diseases. The incentive for pharmaceutical companies is not generally high to work on cures for rare diseases because the potential customers are well, rare! So, it is important that the governments do something proactively to improve the chances for cures to be found and then be taken to the people suffering from these diseases. I have created this small video and uploaded it to the Rare Diseases Day website and the Atypical HUS You Tube channel along with may others around the world to commemorate this day. Friday, February 24, 2012 'More is better when it comes to dialysis': Tell me something new! In a recent study, it was shown that more frequent, longer duration hemodialysis had better outcomes than the conventional thrice weekly, four hour sessions that the majority of patients currently undergo. When I had to switch to Hemodialysis after my peritoneal cavity lost its ability to filter water, I was broken. Life, I thought, was over. But then my nephrologist, Dr. Girish Narayen, suggested nocturnal home hemo. For me, within a few months it was clear that I had got my life back. I didn't need any clinical trials or proof that this modality was better - much, much better. Today, about five years after I switched, I am leading a pretty much normal life. If I had continued on the conventional hospital based thrice a week dialysis, I wouldn't have survived. Yes, there are people who are doing pretty well on conventional dialysis but it is simply not for me. I value my independence a little too much! This study is significant though. Many patients don't have an opportunity to try this. Nephrologists as well! Patients generally think the medical community is trying to maximize revenue and profits by asking them to dialyze more frequently. I don't blame them of course. I would think that way too. But such studies would help patients realize this truth and encourage them to make an effort to increase the hours on dialysis and feel better and live longer. Aashayein 2012 So, Aashayein is done! After weeks of hard work of the entire NephroPlus team including yours truly, the event is finally over. It is difficult to imagine that it is over. After occupying your mind's space for so long, when something of this magnitude is completed, it is often difficult to come to terms with it! The event, as expected was a huge hit. I reached the venue exactly at 8 a.m., the time we (the NephroPlus team) decided to be there by. As usual, I was the only person there. But to their credit, almost the entire team was there within fifteen minutes or so. Some patients started coming in by 8:15 itself. These people had come in from outside Hyderabad. It was heartening to see people come in from so far for the event. And these people were not paid to attend! By 9:30, the hall was almost full. We started playing the Aashayein theme and last year's pictures. We started the program around 10:15 and Dr. Brian Pereira, the chief guest of the event, who is one of the world's top nephrologists spoke very well in Hindi though the word 'gurda' - Hindi for kidney - is a horrible sounding word. I wish they chose a different word! Then there was the traditional lighting of the lamp which Dr. Pereira and Rama Kumari, a NephroPlus patient did. The lamp did take some time to light though! From left, Mrs. Rama Kumari, me, Dr. Pereira and Vikram After this, Dr. Rajasekhara Chakravarthi, nephrologist from Care Hospitals spoke on a few dos and don'ts for folks on dialysis. One thing that struck me during his talk was how almost all the tips he gave were probably known to every dialysis patient who has been on dialysis for a few years but were totally new for those who have been put recently on dialysis. When you get on dialysis, most of the diet tips totally shock you. A lot of what is good for people with normal kidneys is bad for people on dialysis! Dr. Chakravarthi's talk was great for those who were recently diagnosed.

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After this, we had what probably was the best part of the show - the stand-up comedy act by Hari Kishen, a dialysis patient himself. He had everyone including me in splits. His take on the dialysis diet, the doctors and the accent of the nurses in the unit were absolutely hilarious! His show, for me, was the best part of the event. This was followed by talks by Dr. Rajagopal, Transplant Surgeon and Mrs. Charitha Adikane, Dietician, on transplants and the renal diet respectively. A sumptuous lunch followed which was prepared according to the dialysis patient's diet. The food was all salt-free and 1 gram salt packets were provided so that patients could add salt to their food as per their allowance. The vegetables were all leached to remove Potassium. I had a hurried lunch because as I served myself and generously mixed the salt from the packets and started digging into the delicious Malai Kofta, I spotted Dr. P. C. Gupta, the brilliant vascular surgeon who was scheduled to judge the Best Fistula Contest and speak on fistula care. I left my plate and dashed off to welcome him. I got back after making him comfortable to find my plate gone. I served myself another plate. This time I settled for plain rice and dal fry. I love this combination! We started the post lunch session with the Best Fistula Contest and Dr. Gupta declared the winner after which he gave some great tips on how to maintain fistulas for long. We had some games after this and ended the day with Housie and distribution of goodies. I was totally tired after the event and reached home to crash. I awoke this morning with aches in my shoulders and legs! I am taking it easy today. There are some other interesting stories from Aashayein and pictures as well which I will post in the coming days. Wednesday, February 29, 2012 Today is Rare Disease Day I have atypical Hemolytic Uremic Syndrome (aHUS). In the US, there are only about 300 people who have this disease. Most of them are children. Adult aHUS is even more rare. I am not aware of any statistics in India. Fifteen years after I was first diagnosed, I am still waiting for a cure. Eculizumab, a very promising drug has shown very good results with this disease. I will need to get access to this drug (currently not available in India) and then undergo a kidney transplant to be able to have a good chance of a life without dialysis. Atypical HUS is what is officially called a 'rare disease'. Today, February 29th is Rare Disease Day, a day that comes rarely! Worldwide, people affected by one of the many rare diseases are commemorating the day and doing various things to improve awareness among the general population about rare diseases. There is a lot of work happening in the US and Europe in terms of lobbying with governments to improve support to find cures for rare diseases. The incentive for pharmaceutical companies is not generally high to work on cures for rare diseases because the potential customers are well, rare! So, it is important that the governments do something proactively to improve the chances for cures to be found and then be taken to the people suffering from these diseases. I have created this small video and uploaded it to the Rare Diseases Day website and the Atypical HUS You Tube channel along with may others around the world to commemorate this day. This is the Official Rare Disease Day video: Posted by Kamal D Shah at 8:35 AM 0 comments Links to this post Email ThisBlogThis!Share to TwitterShare to Facebook Labels: aHUS, health Friday, February 24, 2012 'More is better when it comes to dialysis': Tell me something new! In a recent study, it was shown that more frequent, longer duration hemodialysis had better outcomes than the conventional thrice weekly, four hour sessions that the majority of patients currently undergo. When I had to switch to Hemodialysis after my peritoneal cavity lost its ability to filter water, I was broken. Life, I thought, was over. But then my nephrologist, Dr. Girish Narayen, suggested nocturnal home hemo. For me, within a few months it was clear that I had got my life back. I didn't need any clinical trials or proof that this modality was better - much, much better. Today, about five years after I switched, I am leading a pretty much normal life. If I had continued on the conventional hospital based thrice a week dialysis, I wouldn't have survived. Yes, there are people who are doing pretty well on conventional dialysis but it is simply not for me. I value my independence a little too much!

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This study is significant though. Many patients don't have an opportunity to try this. Nephrologists as well! Patients generally think the medical community is trying to maximize revenue and profits by asking them to dialyze more frequently. I don't blame them of course. I would think that way too. But such studies would help patients realize this truth and encourage them to make an effort to increase the hours on dialysis and feel better and live longer. Posted by Kamal D Shah at 9:31 AM 0 comments Links to this post Email ThisBlogThis!Share to TwitterShare to Facebook Labels: health Thursday, February 23, 2012 Aashayein 2012 - Pictures Here are some pictures from Aashayein 2012: Lighting the lamp. From L to R: Rama Kumari (NephroPlus patient), me, Dr. Brian Pereira (one of the top nephrologists in the world today, also the Chief Guest at the event), Manjunath (a pillar of the NephroPlus Banjara Hills unit), Vikram Vuppala (NephroPlus CEO). 'Shatadhvanyanukarana Vibhushana' Hari Kishen - a dialysis patient himself, the best part of the program - his jokes on dialysis units were the highlight of the day! Me. In hindsight, the 'kurta' was a tad gaudy! But believe me, it looked more sober than in the picture! Patients enjoying a sumptuous lunch prepared as per the dialysis diet - salt free (patients could take one or two 1 gram salt packets) and were leached of all the Potassium Dr. P. C. Gupta, Vascular Surgeon, judging the Best Fistula Contest Zia, NephroPlus technician giving one of the patients a gift for answering an Antakshari question correctly Posted by Kamal D Shah at 8:51 PM 2 comments Links to this post Email ThisBlogThis!Share to TwitterShare to Facebook Labels: aashayein Monday, February 20, 2012 Aashayein 2012 So, Aashayein is done! After weeks of hard work of the entire NephroPlus team including yours truly, the event is finally over. It is difficult to imagine that it is over. After occupying your mind's space for so long, when something of this magnitude is completed, it is often difficult to come to terms with it! The event, as expected was a huge hit. I reached the venue exactly at 8 a.m., the time we (the NephroPlus team) decided to be there by. As usual, I was the only person there. But to their credit, almost the entire team was there within fifteen minutes or so. Some patients started coming in by 8:15 itself. These people had come in from outside Hyderabad. It was heartening to see people come in from so far for the event. And these people were not paid to attend! By 9:30, the hall was almost full. We started playing the Aashayein theme and last year's pictures. We started the program around 10:15 and Dr. Brian Pereira, the chief guest of the event, who is one of the world's top nephrologists spoke very well in Hindi though the word 'gurda' - Hindi for kidney - is a horrible sounding word. I wish they chose a different word! Then there was the traditional lighting of the lamp which Dr. Pereira and Rama Kumari, a NephroPlus patient did. The lamp did take some time to light though! From left, Mrs. Rama Kumari, me, Dr. Pereira and Vikram After this, Dr. Rajasekhara Chakravarthi, nephrologist from Care Hospitals spoke on a few dos and don'ts for folks on dialysis. One thing that struck me during his talk was how almost all the tips he gave were probably known to every dialysis patient who has been on dialysis for a few years but were totally new for those who have been put recently on dialysis. When you get on dialysis, most of the diet tips totally shock you. A lot of what is good for people with normal kidneys is bad for people on dialysis! Dr. Chakravarthi's talk was great for those who were recently diagnosed. After this, we had what probably was the best part of the show - the stand-up comedy act by Hari Kishen, a dialysis patient himself. He had everyone including me in splits. His take on the dialysis diet, the doctors and the accent of the nurses in the unit were absolutely hilarious! His show, for me, was the best part of the event.

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This was followed by talks by Dr. Rajagopal, Transplant Surgeon and Mrs. Charitha Adikane, Dietician, on transplants and the renal diet respectively. A sumptuous lunch followed which was prepared according to the dialysis patient's diet. The food was all salt-free and 1 gram salt packets were provided so that patients could add salt to their food as per their allowance. The vegetables were all leached to remove Potassium. I had a hurried lunch because as I served myself and generously mixed the salt from the packets and started digging into the delicious Malai Kofta, I spotted Dr. P. C. Gupta, the brilliant vascular surgeon who was scheduled to judge the Best Fistula Contest and speak on fistula care. I left my plate and dashed off to welcome him. I got back after making him comfortable to find my plate gone. I served myself another plate. This time I settled for plain rice and dal fry. I love this combination! We started the post lunch session with the Best Fistula Contest and Dr. Gupta declared the winner after which he gave some great tips on how to maintain fistulas for long. We had some games after this and ended the day with Housie and distribution of goodies. I was totally tired after the event and reached home to crash. I awoke this morning with aches in my shoulders and legs! I am taking it easy today. There are some other interesting stories from Aashayein and pictures as well which I will post in the coming days. Wednesday, February 15, 2012 Its been really long that I posted. I have been down with an infection in my fistula. It all started when I changed one of my cannulation sites for the arterial needle because I was having pain in one of them. Two days I used sharp needles to form the tract and the second day itself it looked like the tract was formed. I had used this site long back so I thought the tunnel reopened easily. The third day, I used a blunt needle and it wasn't going in easily. So, I let Jairam try and he had to dig around a little before it finally went it. The rest of the night was uneventful. Morning was also fine while removing the needles. I then had a shower and on my way to work the new arterial site started paining. It was a deep sting. Within an hour of reaching the office, I started feeling feverish as well and the area had swollen. I took some paracetamol and rested. I left early for the day. I was put on antibiotics by the doctors. After three days, the fever subsided and I am much better now. This week is going to be one crazy week. Its Aashayein, this Sunday! The three days out of circulation have made things a wee bit rushed. Our radio campaign for the event goes live today. Watch out for a surprise in case you hear the English version! Let me know how you found it! Karnataka government is doing a pilot study to support PD financially The Karnataka government, in association with the Institute of Nephro Urology at Victoria Hospital, Bengaluru is starting a 1 year pilot project where 25 patients would be put on Peritoneal Dialysis. The budget is Rs. 35 lakhs. The patients would bear only 35% of the costs and the government would bear the rest. You can read the article where I learnt about this here. This is a great step forward for PD in India. Peritoneal Dialysis is an excellent therapy. In my opinion, it offers a much better quality of life compared to traditional in-center hemodialysis. It requires much fewer diet and fluid restrictions and can be very easily done at home. However, despite all this, a very small fraction of patients are on this therapy. For patients that stay far away from a hospital or a dialysis center, PD is often the only option. PD is slightly more expensive than HD and the patient is responsible for his health to a large extent. This pilot project is a great initiative simply because this is probably the first time any government is doing anything to promote and support this therapy. Dr. G K Venkatesh, the institute's director deserves many congratulations! NephroPlus launching Dialysis Academy "How would you treat someone who gets cramps during dialysis?", I asked the twenty-something technician (with about three years of experience in dialysis) across the table. I was interviewing him for the post of a dialysis technician for a NephroPlus center.

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Cramps are a very commonly faced symptom on dialysis. It happens when fluid is either removed at too fast a rate or if fluid is removed even after the dry weight has been reached. Cramps can also occur if the sodium level falls too low. Any technician or nurse who has spent even a few days at a dialysis center would know that cramps has to be treated by stopping the UF and possibly infusing some saline to compensate for the excess fluid removed. "Ummm....", he hesitated. "Haven't you come across a patient who had cramps?", I asked him. He nodded his head. "Then what would you do?", I pestered. "We will infuse some bleach", he blurted! "Bleach?", I couldn't believe I had heard that! I instantly thanked my stars that I never dialyzed at a unit where this guy was there. If bleach was infused, the patient would be dead! I rejected him immediately. This is only one of many such incidents I can recount from my interviews with dialysis technicians and nurses. The level of knowledge is so pathetic that I shudder to think how these people are manning dialysis units across the country where so many lives are at stake. We go to these units trusting these people completely. We surrender our lives to them without a question. The question is - do these people deserve our trust? At NephroPlus, Vikram, Sandeep and I grimly discussed the scenario. The simple truth was this - good talent is just not available. How then will we expand as planned? How can we run our units without qualified and trained nurses and technicians? One thing was sure - we would not let these people anywhere close to our units! We would have to train and ready people ourselves. This was the only solution. We just released an ad this morning inviting applications to a two year diploma course which will include an examination from a very reputed certification agency for dialysis technicians and nurses from the US. I am personally heading this initiative. This will be one of my main focus areas at NephroPlus. The details of the program can be found here.

www.kidneyblogsite.com

Current books on dialysis consists largely of two types of publications; one is handbooks of practical instruction for physicians, nurses, technicians, social workers and dietitians and the other is encyclopedic works emphasizing the physical, chemical and biological aspects of various types of dialysis and including the wide range of psychosocial issues characteristic of this interesting subspecialty of nephrology. An interesting new book, “Issues in Dialysis” edited by Stephen Z. Fadem brings together individual viewpoints on a variety of current topics. It is a substantial work of 20 chapters, generally very readable, and is a good representation of current opinion. The book begins with the description of 20 milestones in dialysis (with emphasis on the US) by Fadem which incorporate technical progress, process, access development, dialysis as an industry, dosing of dialysis, ESAs and practice Guidelines, transplantation, and government action . Golper and Schreiber provide a powerful argument for an integrated approach to therapy in regard to modality choice and site of treatment, communication and education with patients is stressed. Amy Friedman focuses on the range of decisions implicit in the variable quality of donor kidneys and provides a novel analysis of the expectations of the stakeholders associated with transplantation including patient, surgeon, nephrologists to payer, etc. Chris Blagg contributes a characteristically polished history and evaluation of the Seattle home dialysis experience. Badve, Hawley and Johnson take up the must discussed question of clinical outcomes comparing PD and HD pointing out most evidence is derived from observational studies. In their Chapter on intensified dialysis in children, Thumfart and Muller present this approach as a promise to improve symptoms and psychosocial rehabilitation. Victor Gura provides an impressive argument for development of a wearable artificial kidney, referring also to his considerable personal experience. In a thought provoking essay, Susan Bray deals fully with the issues involved in not automatically dialyzing everybody. She emphasizes the RPA guideline on

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withdrawal from dialysis and the concept of the “time limited trial”. Richard Glassock convincingly provides the basic arguments for the primacy of extracellular fluid overload as the major mechanism for development of left ventricular hypertrophy, the difficulties faced in determining its degree and possible therapeutic approaches to its eradication. In one of the few Chapters devoted to basic science, William Mitch fully but lucidly describes the enzymatic mechanisms underlying muscle wasting in kidney disease as influenced by events occurring in chronic kidney disease such as acidosis, inflammation, increased glucocorticoid production, etc. Allon Friedman, answering the question of the value of serum albumin as a useful marker of nutritional status, convincingly demonstrates its importance as rather a marker of illness. The Chapter on the deregulated immune system in dialysis patients by Grabner, Pavenstadt, Lang and Reuter is important because of the relative novelty of such reviews but also because of its breadth of topics, valuable tables and extensive references. Over activation and malfunction of the immune system is demonstrated from the early stages of CKD until loss of kidney function occurs. Hruska, Fang and Sugatani emphasize the close relationship in CKD patients between low turnover bone disease and vascular calcification and clearly describe the roles of bone regulatory proteins and new skeletal hormones and inorganic phosphorus concentrations. New therapeutic approaches are suggested. Perhaps the most comprehensive Chapter of the book is the 30 page update on anemia and kidney disease by Goli, Pinkhasov, Landry, Chait, Horowitz, Hollot, Shreshtha and Germain. It deals in detail with the physiology of erythropoiesis in CKD, current questions of ESA dosing and resistance, iron metabolism, hemoglobin variability current controversies and much else related to this field. The somewhat neglected field of accumulation of toxic metals and trace elements in dialysis patients is examined by Yen, Lin-Tan,and Lin. They point out the importance of trace metals, particularly lead and cadmium, but also chromium, copper and vanadium as contributing to a variety of pathological processes in patients with kidney disease. James Tattersall’s Chapter on adequacy of dialysis is a remarkably well balanced assessment of the meaning of the term and its application. Dose, different schedules, removal of solutes of various sizes, clearances in vivo and in vitro and normalization of such in HD and PD, various models of pool size and a list of relevant RCTs are lucidly discussed and practical advice given. Syed and Peden provide a very useful essay on the AV fistula which includes its history and the approach to create and maintain fistulae and to handle dysfunction. They point to current investigations to reduce neointimal hyperplasia and the future represented by tissue engineered blood vessels. Anaya-Ayala, Davies and Reardon define the general considerations regarding CVD and its risk factors in dialysis patients before describing pre-and post operative management and outcomes. They suggest that prevention is the most effective treatment. Dori Schatell reviews the concept of health-related quality of life as evaluated by various measures including that of the SF36 and the Kidney Disease Quality of Life. This detailed account is singular, CMS (US government) requirements for such measurements are detailed and practical use of the instruments is clearly presented. The book ends with a succinct discussion of integrated Renal Disease Care by Franklin Maddux initiated by the Institute of Medicine’s document “Crossing the Quality Chasm” and being developed by The US Department of Health and Human Services. The task involves, inter alias, patient population identification, care coordination, CKD and ESRD interventions and eventually introduction of accountable care organizations. These may be major advances in care in the US. The book with its international authorship and its broad range of issues, presents a fascinating picture of current writing on dialysis. It is highly recommended to a broad range of readers.

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www.kidneypatientnews.org Learning to Live With Kidney Failure: A Patient's Perspective Download this article in PDF fomat, 245Kb. By Yusuf Amin So you have been told by your doctor that your kidneys have failed, or that kidney failure is imminent for you. Not good news. Even the medical term for kidney failure - end stage renal disease, or ESRD - is frightening. This article recounts my initial experiences as a renal disease patient and how I faced them as they came up. I have written this article for the benefit of those persons who have either just been informed that they have renal failure (ESRD), that ESRD is imminent for them, or who have only recently begun receiving dialysis treatments. By occupation, I am a technical writer, so I earn a living explaining things. And part of earning my living is asking questions - LOTS of questions - to get information from the engineers and designers who design the equipment that I write about. So, in order to learn about ESRD and thereby be better able to deal with it, I asked a lot of questions. The staff personnel at the facility where I go for hemodialysis (blood cleansing) were very accommodating, freely and willingly answering all of my questions. My feeling was that, the more a patient knows about ESRD, the better he or she will be able to adjust to it, in order to maintain a normal quality of life. Since ESRD can be quite frightening, some mental conditioning is necessary to get ready for it. I have written from experience on this: what I did to prepare myself mentally for this change in my life and condition of health. I drew upon my experience in motivational speaking, and some things I learned listening to motivational tapes. I drew also upon my religious training. But mainly, I tested my mental conditioning methods by using them. In this article, I am talking directly to the patient with ESRD or patient-to-be. What I hope to accomplish in this article is to "walk the patient through" the ESRD experience as one initially goes through it. As I went through it. so the following are some of the things I have found out which you, the new renal disease patient, will find useful to know. Being a patient with ESRD will require you to ORGANIZE YOURSELF to take better care of your life. And being a patient with ESRD will require you to have A POSITIVE ATTITUDE. You will find that these two things - organizing yourself and having a positive attitude - are closely related. Good personal organization is a basis for having a positive attitude. And it is very important that a renal disease patient have a positive attitude. A positive attitude will often determine the quality of life a renal disease patient will have. Its importance cannot be overestimated. If you feel somewhat uneasy about your condition - and who wouldn't - it might not be easy to have a positive attitude. But you can BUILD a positive attitude if you just think about how you shall do it. Typically, the following is what happens and what you learn starting out. Following a blood test, in a hospital as part of an examination, your family doctor calls you and schedules an appointment for you in his office. Why did he call? It isn't time for your regular check-up. So you go to his office, and he breaks the bad news to you: Your kidneys have failed or are failing. Your doctor knows that he has just dropped a ton of bricks on you, and tries to put your mind at ease. He explains the need for and importance of kidney dialysis. He assures you that you will be able to live a fairly normal life with ESRD as long as you have regular dialysis, take your prescribed medicine, and follow your renal diet. You don't want to believe what you have just heard. Perhaps your condition has been misdiagnosed. Perhaps your blood analysis report got mixed up with someone else's. Maybe you are just having a nightmare and you'll soon wake up - with two good kidneys. Finally the reality of ESRD sinks into your mind. So how will you deal with it? At this point, you may feel anger or dismay, and ask, "Why ME?" Toward preparing you for kidney treatments, your doctor has arranged for you to visit the area dialysis center to see how dialysis treatments are performed. At the center, you learn that the majority of patients with ESRD are treated with hemodialysis - the use of an artificial kidney attached to a machine - to filter the patient's blood.

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As you enter the dialysis center, you see people in recliner chairs, tethered to hem dialysis machines by small clear plastic hoses through which their blood - their vital fluid - is running. This is intimidating when you realize that the same thing will soon be happening to you. Questions arise in your mind as to what changes kidney failure will make in your life. What activities will you have to give up? Will you be able to continue your present employment? What foods will you no longer be allowed to have? What medicine and how much medicine will you have to take? How will you be able to afford the dialysis treatments? This is a time of confusion. So how do you deal with it? When you get kidney failure, you find yourself, health-wise, in a place you've never been before. That brings up that natural fear of the unknown. And there is only one way to cope with fear of the unknown and that is to get to know what you have to know. The more you know, starting out, the better you will be prepared for what awaits you. To help you in this regard, the dialysis center nurse-manager may have you watch one or more videotapes showing hem dialysis treatments while explaining them. From these tapes, and from questioning the nurse-manager and center personnel, you learn the following: 1. You will begin your kidney failure treatments with hem dialysis three times a week, each treatment taking three to four hours. 2. As a hem dialysis patient, you will probably be able to continue most of your normal activities IF you take your medicine as prescribed, and IF you adhere to your dietary requirements and restrictions. And of course you must not miss any of your hem dialysis treatments. 3. You will probably be able to continue your employment. If the work you do is strenuous, it will take a little while to work yourself up to being able to do it again. Or you may have to consider changing careers. Occasionally, retiring to disability is necessary. Initially, when one begins hem dialysis, he or she feels weak when a treatment ends. It takes a little while, perhaps several weeks, for the body to become conditioned to hem. After that, you won't likely feel weak after a treatment, but you will have to pace yourself in your activities. And you will have to plan for an adequate amount of rest. 4. Your diet becomes quite restricted. It seems that everything you like to eat is something that you cannot have. Your renal diet limits your sodium, potassium, phosphorus, protein and fluid intake. Problems will be caused by too much of any of these things in your diet. The dietician at the dialysis center will advise you about what you should and should not eat and drink, and will give you literature and meal plans listing allowed food and drink. 5. The doctor at the dialysis center will prescribe the medicines you will need. You will be told that it is very important for these medicines to be taken (a) as prescribed, (b) in the proper dosages, and (c) at the proper times of day. You will be admonished not to take any other medicine - prescribed or over-the-counter - without first consulting the doctor. 6. You are not alone in the effort to cope with your kidney problem. Many dialysis centers have a well-organized and highly competent staff to perform the required treatments and help you to adjust to dialysis. Typically, a dialysis center staff includes a doctor, nurse-manager, nurses and dialysis technicians. And the technician who maintains the all-important hem dialysis machines. Also on the typical staff is a social worker, whose function is to inform you of services, benefits and assistance available to renal patients, and to help you to get them if necessary. Additionally, the social worker helps you with personal problems and concerns, and helps you to adjust to life as a renal patient. 7. As a patient with ESRD, you are eligible for Medicare, regardless of your age, to cover most of your dialysis expenses if you don't have other health insurance. The social worker will help you with Medicare enrollment, which you should do as soon as possible. At this point, you have some idea about what you will have to go through as a renal disease patient. Still, you are dreading that first dialysis treatment. You have seen the big needles used in dialysis, two of which will be stuck in one of your arms. It may be necessary, before starting dialysis treatments, that a minor operation be performed to implant a plastic graft in your arm through which hem dialysis will be done. A graft will be implanted if your veins are unsatisfactory for hem dialysis. This will necessitate that, at the same time the graft is implanted, a subclavian catheter be implanted for immediate use in dialysis treatments. The name, subclavian catheter, indicates where it is implanted: under the collarbone. This subclavian catheter will be used for two or three weeks, until the arm heals where the graft was implanted and is ready for use.

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Finally the day comes when you must take your first hem dialysis treatment, using either the graft or your veins. You are still apprehensive about it, but you are determined to go through with it as best you can. Your first hem dialysis treatment will be a learning experience. After this day, you will know how it feels to be dialyzed. The nurse hooks you up to the hemo machine. You endure the stick of the two #16 or #17 needles in your arm. The pain is gone in a couple of minutes, and you are surprised to find that you are somewhat relaxed. You see other patients who are so relaxed that they are taking a nap. You endure the three to four hours of the dialysis treatment. At last you have experienced it, and you are none the worse for it. Still, you may be uneasy about the prospect of having it done three times a week for three to four hours each time. Not a good way to live. You realize that depression could set in if you don't find ways to offset it. And at this point you sense that you need to make some plans for better management of your time, your health, and you're newly altered life. What are you going to do with the nine to twelve hours per week during which you are having hem dialysis treatments? What worthwhile use can you find for that time? You begin to think: What about that book you have always wanted to read? A good time to read it would be during dialysis treatments. What about personal correspondence? While you are having dialysis treatments, you can write to those aunts, uncles, cousins and friends who haven't heard from you for months, even years. Perhaps you have been thinking about taking a correspondence course, but never made time for doing so. When you sign up for the course, you could do the lessons while having dialysis treatments. What might you study? Something related to your present career perhaps. A course that will help you to change careers. A course about how to operate a particular type of home business. A college course in a subject that has always fascinated you: a course in religion, philosophy, or economics perhaps. The possibilities in this area - correspondence study - are almost endless. And a learning activity is always time well spent, if only for the mental stimulation. If, other than for ESRD, you are healthy, the doctor at the dialysis facility may suggest that you consider a kidney transplant. He then explains to you the pros and cons of kidney transplantation. He tells you that a successfully transplanted kidney works like a normal kidney, helps you to feel healthier, and eliminates the need for dialysis. In addition, with a kidney transplant, there are fewer diet restrictions. And what are the cons of kidney transplantation? Four come to mind: (1) You may need to wait for one or more years for a kidney, unless you have a relative who is willing to donate a kidney to you. (2) Kidney transplantation is major surgery, with the risks inherent in major surgery. (3) One transplant may not last a lifetime. And your body may reject the new kidney. (4) You will have to take anti-rejection drugs the rest of your life. You have to weigh the pros and cons to determine whether or not you want a kidney transplant. The key is to learn as much as you can about transplantation, and discuss it with your doctor and health care team at the dialysis facility. If you decide that you wish a kidney transplant, your doctor can arrange to have it done if you have a relative who will be a kidney donor. If you don't have a donor, he will arrange for your name to be placed on a waiting list for a kidney. Until you can get a kidney transplant, what next do you want to think about? How will you adjust to and manage your renal diet? Adjusting to a renal diet is a real challenge. Many renal disease patients have developed renal disease as a result of having high blood pressure over a long period of time, this high blood pressure having been caused largely by bad diet. So, often when people become renal disease patients, they have to radically change their diets. People who never ate green vegetables previously have to accustom their taste buds to green vegetables. People who love salt in their food have to become accustomed to two to four grams (one or two teaspoons) per day. It may seem an ordeal in the making when the literature you get from the dietician tells you to eliminate chocolate, potatoes, oranges and bananas from your diet. It will be a severe test of your will power to pass up those candied sweet potatoes that you love so much. And if you are accustomed to guzzling glasses of cold milk, you will flinch when you find out that you can only have four ounces a day. Why? Because of the phosphorus content in milk. How do you handle the radical changes in your diet? It takes some planning. Like sitting down with paper and pencil to work out some meal plans from your dietary literature. As restricted as your diet may seem, there are lots of choices given in the dietary literature for renal disease patients. And, within the

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framework of limits on sodium, potassium, phosphorus, and protein intake, you will be able to select numerous foods that you can at least tolerate and many foods that you can really enjoy. As you study your dietary literature, one thing occurs to you: you will no longer be able to eat for the sheer pleasure of eating. For the most part, eating will be solely for nutrition as required for a renal disease patient. Your dietician will tell you that variety is important in your diet. And that each day you should have items from each of the food groups: meats, fruits, vegetables, starches, dairy products, and selected drinks. Within the allowances of your diet, you find that you can do some experimenting to find ways to make your food more palatable. For example, if you don't really like raw carrots, they taste better when shredded. I hate cooked cabbage, but I love cole slaw, which is allowed liberally in my diet. After a while, you will have worked out four or five menus with foods that: (1) are tasty to you, or at least tolerable. (2) are permitted in your diet, and in allowable quantities (3) are not too difficult or time consuming to prepare. Working out four or five menus will prevent your diet from becoming monotonous. As you go along, you will figure out and add more menus to your diet. It isn't a bad idea to keep a diet notebook, wherein you list the diets you have worked out. Such a notebook will be very helpful when you make out your grocery list. You will be able to make certain that you get what you need at the super market to accommodate your diet. You will want to know how well you are doing with your diet. This is no problem. At the typical dialysis facility, your blood is analyzed monthly. And your blood analysis will tell the dietician how well you are doing with your diet. He or she can tell you, from your "blood work", if you are taking in too much phosphorus, too much potassium, too much sodium, too much glucose, or too much protein in your food. And you can then determine what you should either eliminate from or reduce in your diet. A monthly blood analysis shows more than thirty items indicating the condition of your blood. You will find that, when you have questions or concerns about your diet, you can ask the dietician what you want to know. He or she expects and wants you to do so. You can write down your questions or concerns, if necessary, in order to remember to ask the dietician about them. As previously stated, the doctor at the dialysis facility will prescribe the medicines you will need. Typically, your renal condition will require several different medicines. You will find that you shouldn't minimize the importance of any of these medicines, because they ALL serve important functions in the body. You will find that you need to take your medicine as prescribed: in the proper dosages, and at the proper times each day. For a patient with ESRD, it doesn't take long for the body to react if you fail to take your medicine as prescribed. You find that, if you fail to take your iron pills, if prescribed, within less than a day you will feel weak and run-down. If you fail to take your stomach pill, as prescribed, you can expect your stomach to be upset with possible vomiting after a day or so. If you fail to take your blood pressure medicine, if prescribed, your blood pressure could rise rather quickly. You will find that if you fail to take your calcium carbonate tablets (typically TUMS), if prescribed for phosphate binding, your monthly blood analysis will probably show a high phosphorus level. If you fail to take your prescribed vitamins, you will notice a decline in stamina. If you fail to take your stool softener, if prescribed, constipation is a probability for you. How do I know these things? From experience. At one time or another I have gotten busy and forgotten to take one of my medicines. In order to remember to take your medicine properly, it is a good idea to purchase PILL REMINDERS. A pill reminder is a small container with compartments in which to put particular pills according to when they should be taken. Pill reminders are available at any pharmacy. Some pill reminders are for daily use, having four compartments, one each for breakfast time, lunchtime, suppertime, and bedtime. Pill reminders can be purchased in sets of seven, for keeping a week's supply of pills.

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When pressed for time, you simply put one of the filled pill reminders in my pocket. You'll be surprised how convenient it is when you don't have to sort pills each time you take them. And you'll find that you don't forget to take your pills. How you sort out and take your daily medicine is a part of organizing your routine for taking care of yourself. And this is a very important part of learning to live with renal failure. You have to remember the doctor's admonition that you not take any unprescribed medicine, vitamins, or food supplements without first consulting him. Unprescribed substances may counteract your necessary prescribed medicine. Some could be harmful. Medicine for ESRD, you will find, can be quite expensive if not covered by health insurance. If you anticipate problems paying for your medicine, you can ask the social worker what you might do. The social worker can tell you about agencies and organizations that can help you with the cost of your medicine. The nurses and other staff personnel whom you meet at your dialysis facility are people whom you can expect to see three times a week. So you will find that it helps significantly if you build a good rapport with the staff. If you have this rapport, you will cease to regard your treatments only as torture which you must endure. You will appreciate the work that the dialysis facility staff does to help you to maintain your health. You will realize that the average hem dialysis patient is getting more help in maintaining his or her health than outpatients with any other ailment. Three times a week your blood pressure and your weight are checked. Your diet is monitored by a monthly blood analysis. I have only been to one dialysis facility for my regular treatments, the Upper Valley Dialysis Center in Troy, Ohio. However, I sense that it is a state-of-the-art facility, and a model facility in the manner that it is operated. Aside from being highly competent health care professionals, the personnel at Upper Valley Dialysis Center take a genuine interest in the patients, above and beyond the requirements of their job. After you have been on hem dialysis for a while, your doctor at the dialysis facility might suggest peritoneal dialysis as an alternative to hemo. Peritoneal dialysis can be performed at your home, or in any clean area. Peritoneal dialysis uses the lining (peritoneal membrane) of the patient's abdomen to filter the blood. A cleansing solution, called dialysate, travels through a special tube into the abdomen. Fluid, wastes and chemicals pass from tiny blood vessels in the peritoneal membrane into the dialysate. After several hours, the dialysate gets drained from the abdomen, taking the wastes from the blood with it. Then the patient fills the peritoneal cavity with fresh dialysate and the cleaning process begins again. The process is called Continuous Ambulatory Peritoneal Dialysis, or CAPD. Before your first peritoneal dialysis treatment, a surgeon places a small soft tube called a catheter into your abdomen. The catheter always stays there. It is used to transport the dialysis to and from the peritoneal membrane. Your doctor or one of the staff nurses will explain the pros and cons of peritoneal dialysis, and give you literature explaining it in detail. You can then discuss it with the doctor to get his advice, and then make your decision as to whether or not you want to perform dialysis in this manner. Some people like the less restrictive diet that a CAPD patient has. With CAPD, one can eat many items that are not allowed to patients who are on hem dialysis. Some people like the freedom from having to go to a dialysis facility three times a week. With CAPD, the patient goes to the dialysis facility once a month to have blood drawn for analysis. And what are the cons of CAPD? Some people dislike how frequently one must have dialysis when on CAPD - four or five times a day. Others dislike having the CAPD catheter protruding from the stomach. Others dislike the large amount of dialysate solution and other CAPD supplies one must keep on hand. Earlier in this article, I spoke of the importance of developing a positive attitude. Doing so was something which I absolutely HAD to do do even BEFORE becoming a renal disease patient. In 1991, I was told by my doctor that I had only about 20% of my kidney function left, and would soon require kidney dialysis treatments. In July of 1992, I experienced cardiac arrest. Heart stopped. Five shocks of electricity were required to re-start my heart. I am told that I was in a coma for three days, as doctors at the hospital where I was taken wondered if I had sustained serious brain damage. And perhaps I would not wake up at all. If one has been unconscious for the length of time it takes to: (1) have someone attempt CPR, (2) call the paramedics, (3) have them arrive, and (4) have them deliver five shocks of electricity, one's brain has probably been denied oxygen long enough for serious brain damage to occur.

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When I regained consciousness, the doctor in attendance said that my recovery was a miracle: no brain damage at all! A few days after I regained consciousness, I underwent surgery to have a defibrillator implanted in the middle of my body, with electrodes running up to my heart, to shock it back to rhythm if the rhythm is lost. I remained in the hospital for three weeks, during which it was determined that I needed to immediately begin dialysis treatments. So these treatments were started while I was still in the hospital recovering from cardiac arrest. So I had to deal with a DOUBLE WHAMMY, so to speak, as far as my ailments were concerned. I had always been told that I have a positive attitude about life. And now that attitude would be tested. I had literally been at death's door. Many people, I am told, would have given up on life, figuring that, having been at death's door in the WAY that I had, it would only be a short time before going THROUGH death's door. My dogged determination took over. Life is a challenge. I decided to face the challenge of literally coming back from the dead to a useful life. After all, what did I have to lose by facing the challenge? Nothing at all. And what did I have to gain from facing the challenge? Much! Much that is of importance. If I would stay alive, I would be around to be of help to my family. I would still be able to pursue personal goals - particularly those related to the work of my faith. I am a Muslim. And I remembered one of the sayings of the Prophet Muhammad (peace be on him): " Remember your Creator as if you think you will die shortly, but live your life as positively as if you knew that you could live a thousand years". Never before had that saying meant as much to me as it now did. It reminded me that I should focus on life, not death. On blessings, not troubles. On helping others, not feeling sorry for myself. It occurred to me that building a positive attitude is like building a house. One has to start with a FOUNDATION. A positive attitude must have a BASIS. Not many people with a positive attitude got this attitude without having a basis for it. Patrick Ewing, the New York Knickerbockers' basketball player can have a more positive attitude about dunking a basketball than I can. Why? Because he has more BASIS for it than I do. Pat Ewing is seven feet tall, in great physical condition, young, with lots of spring in his legs. I am almost twice his age, about a foot shorter, with one bad leg. Thus I can't have as positive an attitude about dunking a basketball as Pat Ewing can. Is this an extreme example? Somewhat facetious? I guess it is. But it illustrates the point: a positive attitude must have A BASIS. What, then, is the basis for a positive attitude when one has a disease as serious as renal failure? It is obvious that, if you feel sorry for yourself, you could easily drift into depression. In the process of having to cope with a situation new and different for me, I had to figure out how to keep my chin up, how to have and maintain a positive outlook. I decided to seek the solution in the teachings of my faith, Islam. As I searched the Qumran and my mind for applicable Islamic principles, the answer occurred to me: Islam calls man to a higher purpose. If I wanted to have a really useful life, I had to LIVE FOR A HIGHER PURPOSE than just for myself. By doing that, I would minimize my personal troubles and maximize my worthwhile activities of life. It occurred to me that, to alleviate depression, one must find good reasons NOT to be depressed. It figures that, if your state of mind isn't good, you must introduce something into your life that is more important than your state of mind and your view of your current circumstances. And when you have done this, you will have developed the basis for a positive attitude. So it figures that one should CHECK WITH HIMSELF as to what his life purposes are - or COULD be. Then he must focus on these purposes and begin to fulfill them. On the basis of what I figured out and learned in this regard, I can offer the following thoughts.

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Maybe you haven't as yet selected a particular and specific life purpose. Whether or not you have, it figures that you need something that can interest you to the extent that it could become your life's work. Something that can consume so much of your attention and energy that you will not have time or reason for depression about your physical ailment. What is it that is most important for you to accomplish? What WOULD be important for you to accomplish if your health were perfect? Do you have family members whom you can help career-wise and otherwise? What about your religion? Are there congregational activities you could participate in to the benefit of others? Is there some social or humanitarian activity that is of interest to you? The local Salvation Army can always use volunteers. So can your local hospital and even your area dialysis facility. Children in single-parent homes need Big Brothers and Big Sisters. Mentors. Finding the life purpose activity for which you are best suited will take some thinking, but you CAN find something very satisfying and fulfilling - and useful. Perhaps it could be a hobby, which you have or can learn, wherein you make some useful items to give away. It is important, when you select a purpose with which to bring fulfillment to your life, that you APPRECIATE THE SIGNIFICANCE of what you are doing. You must not see it as just something to do to pass time. There is a story which illustrates this. Three bricklayers were building a place of worship. A gentlemen came by and asked each one what he was doing. The first bricklayer said, "I am laying this line of bricks". The second bricklayer said, "I am building a wall". The third bricklayer said, gleefully, "I am building a magnificent temple where people will be able to come and worship God for generations, even centuries, to strengthen their spiritual lives". Obviously, the third man had a better grasp of the significance of his work than did the other two men. What does this mean to you? Suppose you find yourself making sandwiches for the homeless at the Salvation Army. The significance of what you are doing is that you are helping someone to survive, and you are helping someone to be encouraged about life. You are helping to maintain earth's most precious resource - human life. You are not just slapping slices of lunch meat between slices of bread. Faith and family are two purposes that invite one's focus. My focus on faith and family gives my life purpose. This focus occupies so much of my attention and energy that I rarely think of my physical ailment, except to remember to take my medicine, follow my diet, and to go to the center for dialysis. Regarding work associated with my faith, I am presently gathering notes for a book that I intend to write for use in prison ministry. I also write articles occasionally for a religious magazine. And in the future, I expect to be composing employment resumes for congregation members. As for focus on family, I am blessed with a very good home life, which helps me greatly for maintaining a positive attitude. My lovely wife Hyacinth helps me immensely in this regard. She is a very positive, purpose-oriented lady. She gives me incentive to always keep my chin up. Thus it means a lot to me to be able to help her with her goals in life just as she helps me with mine. Our son Christopher is a source of purpose for me also. Chris recently graduated from high school. Some months ago, I was hospitalized with a severe, potentially life-threatening infection and Chris came to visit me in the hospital. He stayed about half an hour, and we talked about his career plans. We didn't talk at all about my infection. Helping him to prepare himself vocationally was more important to me than my physical ailment. So I focused on purpose. Very recently, Chris said to me, "Dad, I really appreciate all that you are doing to help me". I told him that, in a very real sense, I need him every bit as much as he needs me. Helping him - being an anchor and a mainstay in his life - gives MY life more purpose. My employment gives me a great deal of satisfaction also, especially when I consider the significance of my work. I write technical manuals for aircraft ground power units used to start commercial aircraft and to perform maintenance on these aircraft. As I compose the manuals, I think about the necessity that the information therein be accurate and explicit. This, I feel, helps maintenance technicians to do good service on aircraft, and this contributes to passenger safety. Thus my employment helps to give my life purpose. To summarize what has been said, depending on the mentality with which one faces kidney failure, it can be a huge mountain in your way or just a bump in the road. So how do you make this huge mountain into a mere bump in the road?

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First, after learning that you have kidney failure, you assess your situation. You find out that you have a MANAGEABLE ailment, but that you CAN die from this ailment if you don't manage it. Health-wise, you are going someplace you haven't been before. This brings up a natural fear of the unknown. And there is only one way to cope with fear of the unknown, and that is to get to know what you have to know. Three areas of knowledge are imperative for managing your life when you have kidney failure: You must get a rudimentary knowledge of what your kidney dialysis (blood cleansing) treatments do for you, and the importance of such treatments. You have to remember that you cannot skip treatments. You must learn and make the adjustment to a renal diet, a diet for kidney patients, which is quite restrictive. You must get to know what foods are allowed, what foods are not allowed, and what foods can be eaten in limited quantities. Renal failure will require you to take a number of prescribed medicines. It is important that you know what these medicines do for you, and take them in the prescribed dosages, at the proper times of day. When you know what to do, and you develop your routine for doing it, a major calamity can become little more than a minor inconvenience. From there, you go on with life, focusing on your purposes in life. ESRD isn't so scary if you are (1) KNOWLEDGEABLE about the disease, (2) ORGANIZED to do the necessary things to cope with ESRD, and (3) FOCUSED ON PURPOSE. One might still wonder what qualifications I have for writing this article. I am not a health care professional, just a guy with bad kidneys. And a bad heart. And bad eyesight. And a bad leg. I have a bad ______________. Fill in the blank with just about any body part, and, on me, that body part is probably defective. But together most of the parts are still working. I am thankful for that. I qualify to write this article because none of what I have written is theoretical. Everything I have written about is something that I have experienced. And I know kidney failure from a perspective that not even the most astute nephrologist (kidney specialist) would know it - unless he too had kidney failure. By the Grace of the Almighty God, I am still here on earth where I can perhaps help others to benefit from my experiences. This article is an effort to help patients who are new to renal failure to adjust to it. My feeling is this: When a person has been as abundantly blessed as I have been, he has to GIVE SOMETHING BACK. He has to justify having received God's special blessings and mercy by helping others. If you are a renal disease patient, my prayers are with you. I hope that what I have said in this article will help you. And if you live for the glory of God, you WILL find peace and strength.

www.lindagromkomdkidneycare.blogspot.com/ Thursday, February 2, 2012 Time to Get Zealous! I'm attending a Continuing Medical Education conference presented by the University of Washington today and tomorrow. It's a comprehensive CME on Diabetes for the Primary Care Provider. Having done my late husband's home dialysis care for several years, I am very aware of the human costs of diabetic renal failure. Puncturing your spouse's arms with 15 gauge needles several times a week gives you the right to be a bit of zealot in wanting to prevent diabetes in general, and its renal complications in particular.

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We offer a Weight Loss Program in my primary care clinic.Throughout the conference, we're hearing "diet and exercise." That's what we offer - and we take our clients on activities: rowing, kayaking, walking, etc. We're serious! ?There's just no question about it: we can help reduce the severity and complications of diabetes through lifestyle measures: weight control, physical activity, etc. We all need to be zealots in the area of prevention: health care providers, educators - all of us. Especially when you know what the consequences of diabetes can be, like I do. Take care, Linda Gromko, MD

livingwithpkd.blogspot.com/ I'm a crappy patient I hate being laid up. Like, HATE IT. I am inherently lazy, and usually am not generally opposed to a day spent sort of lounging around. I do it more often than I should, really. But FORCED lounging, well, the only good thing about that is that I can make my husband do the dishes without feeling guilty about it. To top it off, this weekend I got pinkeye, compliments of the 4 year old carrier monkey that lives with me, who brought it home from preschool. Being prohibited from driving AND having a contagious condition? The universe must be seriously laughing its guts out right about now. And I'm discovering that I'm not really a very nice person. I mean, it's all well and good to be cheerful when things are fine, but when your foot hurts and your body goes stale from inactivity and your mind goes to mush because it's too hard to concentrate on anything real when you are in pain and you can't see past your eye boogers, it's harder to maintain a cheerful exterior. In short, I'm becoming a raging emotionally unstable banshee from hell. This morning, I broke down in the kitchen upon discovering that my daughter had poured the last of the milk into a large cup, just for fun. There was no mess to be cleaned up, only room temperature milk that could still be used for cereal. Normally I would have just packed my kid up and gone to the store, but since I can't drive, I knew that there no more cold milk to be had until my husband got home from work that day. It was too much. I started to cry, and asked tearfully why my daughter didn't put the milk back in the fridge to keep it cold. She got confused, and then worried, and then started bustling about, saying things like, "I can put this milk back in the fridge, mom!" When I resigned myself to eating cereal with warm-ish milk, I still sat there crying into my Captain Crunch. Little Sister continued to be concerned, and offered me her leftover milk from the cereal she had eaten about an hour before, and she said, "I'll put THIS milk back in the fridge, and in 4 seconds, it will be cold again!" I told her not to worry about it, that it was fine, so she

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left the bowl next to the fridge and said, "It's just riiiight here, Mommy, if you change your mind." She said it softly, soothingly, like she was trying to calm a crazed animal. She then came back to the table and awkwardly stood there, looking at my dripping face, and finally whimpered, "Just please stop crying, Mommy!" It struck me then that I'm not sure if in her short life, she's ever seen me cry. I don't know if that's a good thing or not, but it did make me feel a little sheepish that the first time she sees her mother break down in sobs is over milk. And not even spilled milk at that. Tonight I unleashed a storm of fury at my 9 year old who refused to do his homework. Because nothing motivates a kid to do his math like his mom throwing a bigger tantrum than he did. I'm just sayin', today MIGHT have been a bad parenting day. I think I'll take a Vicodin and try again tomorrow. Posted by Heather O. at 2/13/2012 07:11:00 PM 2 comments Email ThisBlogThis!Share to TwitterShare to Facebook Wednesday, February 01, 2012 Grace under fire I have always admired my grandmother. She lived well into her 90s, and was bedridden the last year of her life. Her hips, which had been replaced earlier in life, basically crumbled away, and she was unable to walk. She handled her situation with grace and composure, and I never heard her complain about something I'm sure was fairly painful. I've learned this week that I most definitely do NOT take after her. I broke my foot on Saturday. I wish I could tell you that I did it in some awesome way, but really, I just misstepped and rolled my foot in a ditch at the end of the a driveway. I was carrying Little Sister, and I'm sure I compensated somehow so as not to drop her, and ended up with two avulsion fractures in my foot. Basically, that means that I snapped some ligaments, and they took small pieces of bone with them. Nice. In the ER, things were moving slowly, as would be expected. When they x-rayed my foot, and twisted it in such a way as to get the picture they needed, I yowled in pain. When we got back to the room, there was a pain pill sitting in a cup, with water next to it. I asked my husband to give me the pain pill, but he decided he should ask somebody. The nurse and the doctor came in, and the nurse said, "I'll give you the medicine after the doctor explains things to you." I said, "Could you please give it to me now?" I wanted to say to her, "I don't know if you know this, but BREAKING A BONE HURTS LIKE HELL", but I refrained, thinking that being a nurse and all, she would probably know this fact. But she diddled, hemmed and hawed, and finally I said to my husband, "Just GIVE IT TO ME!" and the nurse only acted when my husband picked up the pill himself and got ready to give it to me. I also wonder if me closing my eyes and banging the wall with my fist in an effort to take my mind off the pain gave her pause. She huffed and puffed and said "Fine, I'll give it to her." Well, thanks, nurse lady, thanks very much.

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When she left in a huff, the doctor grinned at me and said, "She's having a bad night." Really? Worse than mine? She broke her foot in two places too? (See? Not gracious. Not gracious at all.) (I actually didn't say that, though. Just because I'm not gracious doesn't mean I want to piss off my doctor. Plus, I'm kind of a coward when it comes to confronting folks, so I just usually say mean things about them in my head.) While I sat in the hospital bed, enduring, well, the hospital, DH kept taking pictures of me on the iphone, just to show me how bad I was scowling. Apparently I'm funny when I scowl. How I wished I had had something to throw at him. I now have a storm trooper boot on my foot, something that will be my companion for the next 4-6 weeks. It could be worse. I could have a cast, or need surgery. As it is, I just get to hobble around for a month. But since it's my right foot, it means I can't drive for that long, either. Oh, the joy. It's like bed rest all over again, except at the end of it, I don't get a baby, I get a foot. Which is not nearly as cute. The good news, though, is that UNLIKE bed rest, I have some excellent drugs to keep me company. And it's hard to hate the world when you're blissed out on Vicodin. Vicodin's my favorite.

www.nytimes.com/2012/02/19/health/lack-of-unified-system-hampers-kidney-transplants.html?pagewanted=allpkdkidney.blogspot.com/2012/02/kidney-transplant-chain-sets-record.html Lack of Unified System Hampers Kidney Transplant EffortsBy KEVIN SACK Published: February 18, 2012 Recommend Twitter Linkedin Reprints Share Close DiggRedditTumblrPermalink. Many of the most prominent names in the field of kidney transplantation agree that the way to maximize the number of transplants through paired exchanges is to create a single, nationwide registry. That, they note, would vastly expand the pool of potential matches among transplant candidates who have willing but incompatible donors. Multimedia Interactive Feature A Record Chain of Kidney Transplants.Related 60 Lives, 30 Kidneys, All Linked (February 19, 2012) And yet, more than a decade after the first organ swap in the United States, the transplant world remains disjointed, with competing private registries operating with little government oversight or regulation. The federal government started a paired exchange pilot project in late 2010, but it lags far behind nonprofits like the National Kidney Registry in making successful matches. Whether the disparate groups will join forces is uncertain. But the continuing fragmentation may be preventing potential transplant matches. And it means that a number of sensitive ethical concerns, like ensuring that kidneys are allocated according to universally accepted priorities, could go unsettled for years.

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“It’d be best if we could have a master registry,” said Katrina A. Bramstedt, a transplant ethicist and co-author of “The Organ Donor Experience: Good Samaritans and the Meaning of Altruism.” “But there are so many little kingdoms in the transplant world, and I don’t know that we’ll ever break away from that.” Registry leaders regularly call for a unified system even as they expand their own domains. Some are national in scope, others are regional, and some exist within a single hospital. “Unfortunately, I’m part of the problem, and I regret that,” said Dr. Michael A. Rees of the University of Toledo Medical Center, whose registry, the Alliance for Paired Donation, put together the first non-simultaneous kidney chain. “Dealing with the egos of transplant surgeons — and I’m one of them, and we all think we have the right way — is like herding cats. It’s such a solvable problem. We just need to work as a single entity.” In late March, a consortium of medical societies plans to hold a “consensus conference” near Washington to begin the search for common principles, and perhaps a common structure. “Organs should be seen as a national resource,” said the meeting’s organizer, Dr. Sandy Feng, a transplant surgeon at the University of California, San Francisco, medical center. “And so we should look for agreed-upon principles to guide practice.” The conference agenda includes discussion about whether there should be a single registry or whether multiple networks might work more effectively because of the logistical challenges posed by chains, Dr. Feng said. If there are going to be several registries, she said, they should abide by the same policies about how organs are distributed. For example, should more weight be given to making difficult matches for recipients who are particularly prone to rejection, or to achieving as many transplants as possible? Should a patient’s health status or age or time on the federal transplant waiting list be considered? The answers now vary from registry to registry. “This is organ allocation,” said Dr. Dorry L. Segev, a transplant surgeon at Johns Hopkins Hospital, which has a registry that caters to hard-to-match patients. “They’re deciding who lives and who dies.” With black-market organ brokers and Internet matching in the headlines, pioneers in kidney-paired exchange recognize that they may be one misplaced shipment or medical mishap away from deeper scrutiny. But they also continue to stretch boundaries. Garet Hil, founder of the National Kidney Registry, which is based on Long Island, N.Y., said he hoped to attempt a transoceanic swap some day soon. Others have discussed starting chains with deceased donor kidneys, adding magnitudes of logistical complexity. “It is a little bit like the Wild West,” said Dr. Robert A. Montgomery, another transplant specialist at Hopkins. “There has to be some regulation, and it has to be fair, because if people don’t think it’s fair, they’re not going to donate organs.” Rick Ruzzamenti admits to being a tad impulsive. He traded his Catholicism for Buddhism in a revelatory flash. He married a Vietnamese woman he had only just met. And then a year ago, he decided in an instant to donate his left kidney to a stranger. Multimedia Interactive A Record Chain of Kidney Transplants. Links in the Chain Links in the ChainClose VideoSee More Videos » .Related Lack of Unified System Hampers Kidney Transplant Efforts (February 19, 2012) THE FOUNDER Garet Hil formed the National Kidney Registry after his daughter became ill. Readers’ Comments Readers shared their thoughts on this article. Read All Comments (202) » In February 2011, the desk clerk at Mr. Ruzzamenti’s yoga studio told him she had recently donated a kidney to an ailing friend she had bumped into at Target. Mr. Ruzzamenti, 44, had never even donated blood, but the story so captivated him that two days later he called Riverside Community Hospital to ask how he might do the same thing.

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Halfway across the country, in Joliet, Ill., Donald C. Terry Jr. needed a kidney in the worst way. Since receiving a diagnosis of diabetes-related renal disease in his mid-40s, he had endured the burning and bloating and dismal tedium of dialysis for nearly a year. With nobody in his family willing or able to give him a kidney, his doctors warned that it might take five years to crawl up the waiting list for an organ from a deceased donor. “It was like being sentenced to prison,” Mr. Terry recalled, “like I had done something wrong in my life and this was the outcome.” As a dawn chill broke over Chicago on Dec. 20, Mr. Terry received a plump pink kidney in a transplant at Loyola University Medical Center. He did not get it from Mr. Ruzzamenti, at least not directly, but the two men will forever share a connection: they were the first and last patients in the longest chain of kidney transplants ever constructed, linking 30 people who were willing to give up an organ with 30 who might have died without one. What made the domino chain of 60 operations possible was the willingness of a Good Samaritan, Mr. Ruzzamenti, to give the initial kidney, expecting nothing in return. Its momentum was then fueled by a mix of selflessness and self-interest among donors who gave a kidney to a stranger after learning they could not donate to a loved one because of incompatible blood types or antibodies. Their loved ones, in turn, were offered compatible kidneys as part of the exchange. Chain 124, as it was labeled by the nonprofit National Kidney Registry, required lock-step coordination over four months among 17 hospitals in 11 states. It was born of innovations in computer matching, surgical technique and organ shipping, as well as the determination of a Long Island businessman named Garet Hil, who was inspired by his own daughter’s illness to supercharge the notion of “paying it forward.” Dr. Robert A. Montgomery, a pioneering transplant surgeon at Johns Hopkins Hospital, which was not involved in the chain, called it a “momentous feat” that demonstrated the potential for kidney exchanges to transform the field. “We are realizing the dream of extending the miracle of transplantation to thousands of additional patients each year,” he said. The chain began with an algorithm and an altruist. Over the months it fractured time and again, suspending the fates of those down the line until Mr. Hil could repair the breach. Eventually, he succeeded in finding needle-in-a-haystack matches for patients whose antibodies would have caused them to reject organs from most donors. Until now, few of the donors and recipients have known one another’s names. But 59 of the 60 participants consented to be identified by The New York Times and to tell the stories, each with distinct shadings, that ultimately connected them. Despite an intensely bitter breakup, a Michigan man agreed to donate a kidney for his former girlfriend for the sake of their 2-year-old daughter. A woman from Toronto donated for her fifth cousin from Bensonhurst, Brooklyn, after meeting him by chance in Italy and then staying in touch mostly by text messages. Children donated for parents, husbands for wives, sisters for brothers. A 26-year-old student from Texas gave a kidney for a 44-year-old uncle in California whom he rarely saw. In San Francisco, a 62-year-old survivor of Stage 4 Hodgkin’s lymphoma donated for her son-in-law. On Aug. 15, Mr. Ruzzamenti’s kidney flew east on a Continental red-eye from Los Angeles to Newark and was rushed to Saint Barnabas Medical Center in Livingston, N.J. There it was stitched into the abdomen of a 66-year-old man. The man’s niece, a 34-year-old nurse, had wanted to give him her kidney, but her Type A blood clashed with his Type O. So in exchange for Mr. Ruzzamenti’s gift, she agreed to have her kidney shipped to the University of Wisconsin Hospital in Madison for Brooke R. Kitzman’s transplant. It was Ms. Kitzman’s former boyfriend, David Madosh, who agreed to donate a kidney on her behalf despite their acrimonious split. Mr. Madosh’s kidney flew to Pittsburgh for Janna Daniels, a clerical supervisor, who got her transplant at Allegheny General Hospital. And her husband, Shaun, a mechanic, sent his kidney to Mustafa Parks, a young father of two at Sharp Memorial Hospital in San Diego. On and on the chain extended, with kidneys flying from coast to coast, iced down in cardboard boxes equipped with GPS devices and stowed on commercial aircraft.

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In a system built on trust, one leap of faith followed another. The burdens of scheduling operations all across the country — so donors would not have to travel — meant that operations were not always simultaneous, or even sequential. The most worrisome risk was that donors would renege once their loved ones received kidneys. Enlarge This Image Nicole Bengiveno/The New York Times A COUSIN’S GIFT Josephine Bonventre’s donation allowed her cousin to get a stronger match, and also set off the final 11 transplants. Multimedia Interactive A Record Chain of Kidney Transplants. Links in the Chain Links in the ChainClose VideoSee More Videos » .Related Lack of Unified System Hampers Kidney Transplant Efforts (February 19, 2012) Enlarge This Image Monica Almeida/The New York Times IN TRANSIT A courier, Cynthia Goff, saw that the kidney donated by Sherry Gluchowski in Los Angeles got to its recipient in Chicago. Readers’ Comments Readers shared their thoughts on this article. Read All Comments (202) » After John A. Clark of Sarasota, Fla., got a transplant on Sept. 28 at Tampa General Hospital, his wife, Rebecca, faced a 68-day wait before it was her turn to keep the chain going. Ms. Clark said that it crossed her mind to back out, but that she swatted away the temptation. “I believe in karma,” Ms. Clark said, “and that would have been some really bad karma. There was somebody out there who needed my kidney.” An Organ to Spare It is considered a quirk of evolution that humans have two kidneys when they need only one to filter waste and remove excess fluid from the body. Yet when kidneys fail, whether from diabetes or high blood pressure or genetic disorders, they tend to fail in tandem. Death can arrive in a matter of weeks for many renal patients if they do not have their blood cleansed through dialysis. The process takes almost four hours, three times a week, and leaves many too drained to work. Only half of dialysis patients survive more than three years. Many of the 400,000 Americans who are tethered to dialysis dream of a transplant as their pathway back to normal. But with the demand for kidneys rising faster than the number of donors, the waits have grown longer. While about 90,000 people are lined up for kidneys, fewer than 17,000 receive one each year, and about 4,500 die waiting, according to the United Network for Organ Sharing, which maintains the wait list for the government. Only a third of transplanted kidneys come from living donors, but they are coveted because they typically last longer than cadaver kidneys. For kidneys transplanted in 1999, 60 percent of organs from live donors were still functioning after 10 years, compared with 43 percent of organs from deceased donors. Although other living tissue can be transplanted — slices of pancreas, liver and intestine, bone marrow and lobes of lung — kidneys are uniquely suited because donors have a spare and the operations are almost always successful. A reason there are not more live kidney donations, however, is that about a third of transplant candidates with a willing donor find that they are immunologically incompatible. Some, because of previous transplants, blood transfusions or pregnancies, may have developed antibodies that make them highly likely to reject a new kidney. Using a blood-filtering technique known as plasmapheresis, doctors can now lower the odds that a recipient will reject an incompatible kidney. But the procedures are taxing and expensive. Domino chains, which were first attempted in 2005 at Johns Hopkins, seek to increase the number of people who can be helped by living donors. In 2010, chains and other forms of paired exchanges resulted in 429 transplants. Computer models suggest that an additional 2,000 to 4,000 transplants could be achieved each year if Americans knew more about such programs and if there were a nationwide pool of all eligible donors and recipients. Such transplants ultimately save money as well as lives. The federal Medicare program, which pays most treatment costs for chronic kidney disease, saves an estimated $500,000 to $1 million each time a patient is removed from dialysis through a live donor transplant (the operations typically cost $100,000 to $200,000). Coverage for kidney disease costs the government more than $30 billion a year, about 6 percent of the Medicare budget.

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Dialysis, which in the United States is almost always administered in outpatient clinics, saps the productivity of caregivers as well as of patients. Nearly two years ago, Kent Bowen, 47, of Austin, Tex., gave up his job hanging gutters, and much of his freedom, so he could provide dialysis at home to his mother, Mary Jane Wilson. Before donating a kidney for her as part of the chain on Dec. 7 at Methodist Hospital in Houston, Mr. Bowen said he looked forward not only to helping his mother, but also to a long-deferred fishing trip. “In all actuality,” he said, “giving a kidney is a small price to pay for getting my life back.” Understanding the Pain Garet Hil and his wife, Jan, may never fully recover from the snowy night in February 2007 when they took their 10¬year-old daughter in with flu symptoms and emerged with a shocking diagnosis of nephronophthisis, a genetic kidney-wasting disease. They could not imagine sacrificing her youth to dialysis. Because Mr. Hil and his daughter shared the same blood type, he assumed he would be able to give her one of his kidneys. But two days before surgery, doctors canceled the operations after discovering that his daughter had developed antibodies that would most likely cause rejection. Jan Hil and six other family members volunteered but were also ruled out. Mr. Hil and his daughter joined several of the registries that had started to arrange kidney exchanges, but the pools were small and they never found a match. Fortunately, one of Mr. Hil’s nephews then was tested and was able to donate. After the successful transplant, Mr. Hil, a veteran business executive, could not shake his frustration that a more effective registry for paired kidney donation did not exist. “The exchange systems out there weren’t industrial strength,” he said. By the end of 2007, the Hils had formed the National Kidney Registry and rented office space in an old clapboard house in Babylon, N.Y. The couple invested about $300,000 to start it, and Mr. Hil, who is now 49, ran the registry without a salary. “The goal was very simple: get everybody transplanted in under six months if you had a living donor,” he said. “One of the things that drove us was the enormity of the problem. The other thing that drove us was that we understood the pain of being in that situation.” Multimedia Interactive A Record Chain of Kidney Transplants. Links in the Chain Links in the ChainClose VideoSee More Videos » .Related Lack of Unified System Hampers Kidney Transplant Efforts (February 19, 2012) Readers’ Comments Readers shared their thoughts on this article. Read All Comments (202) » Mr. Hil turned out to be the right person to infuse the budding science of kidney exchange with an entrepreneurial spark. A former Marine reconnaissance ranger with an M.B.A. from the Wharton School, he had managed a series of data and logistics companies in Boston and New York and understood the worlds of both computing and finance. He had made his money and could step off the career track to give the registry his time and the resources of his software-consulting firm. He had a background in quantitative math and enough drive to plow through medical texts about organ compatibility. Over time, he led a team in designing sophisticated software that evolved to build ever-longer chains. Disney-hero handsome, with a cleft chin and thick wavy hair, Mr. Hil marketed his registry to hospitals with PowerPoints and passion. The transplant world initially regarded him as an interloper. But he has now persuaded 58 of the country’s 236 kidney transplant centers, including many of the largest, to feed his database with information about pairs of transplant candidates and their incompatible donors. Starting at 5 a.m. each workday, Mr. Hil manipulates several hundred pairs into transplant chains with a few clicks of a mouse. Last year, he arranged 175 transplants this way, including the 30 in Chain 124, more than any other registry. On average, patients received transplants about a year after being listed. The same year that Mr. Hil’s daughter got sick, Congress amended the National Organ Transplant Act to clarify that paired exchanges do not violate federal laws against selling organs. The blessing from Washington broke down resistance in many hospitals just as the National Kidney Registry was opening for business. The Evolving Chain

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Although the first live kidney was transplanted in 1954 in Boston, three decades passed before a Stony Brook University surgeon named Felix T. Rapaport first theorized about kidney swaps in a 1986 journal article. Korean surgeons completed the first exchanges in 1991, but they were not successfully attempted in the United States for nearly another decade. Simple swaps among two pairs, with the operations performed at the same hospital on the same day, quickly evolved into complex exchanges among three pairs and then four and then six. Then in 2007, a transplant surgeon at the University of Toledo Medical Center, Dr. Michael A. Rees, had a forehead-slapping insight. If an exchange began with a Good Samaritan who donated to a stranger, and if the operations did not have to be simultaneous, a chain could theoretically keep growing, limited only by the pool of available donors and recipients. Dr. Rees reported in 2009 that he had strung together a chain of 10 transplants. Mr. Hil seized on the idea and set out to build an algorithm that would enable even more transplants. Nowadays, his pool typically consists of 200 to 350 donor-recipient pairs. That is enough to generate roughly a googol — 10 to the 100th power — of possible chains of up to 20 transplants if all of the pairs are compatible, said Rich Marta, the registry’s senior software designer. The program quickly eliminates matches that will not work because of incompatible blood types or antibodies, or because a transplant candidate insists that a donor be under a certain age or a close immunological match. It then assembles up to a million viable combinations at a rate of 8,000 per second. The algorithm ranks the possible combinations by the number of transplants they would enable, with weight given to chains that find kidneys for hard-to-match patients and those who have waited a long time. There are several registries like Mr. Hil’s, each with a distinct approach. Largely unregulated by government, they invite sensitive questions about oversight and ethics, including how kidneys are allocated. A number of medical societies are convening in March to seek consensus on that and other issues related to paired exchanges. Mr. Hil knows the patients in his pool only by code names and leaves all personal interactions to the hospitals. He keeps several chains running at a time, and says tending to them is like playing three-dimensional chess. Chain 124 even included one pair that was immunologically compatible. Josephine Bonventre, a 40-year-old real estate agent from Toronto with Type O blood, could have donated a kidney directly to a fifth cousin, Cesare Bonventre, a 27-year-old tile worker from Brooklyn with Type B. But a second level of matching requires the synching of six antigens, a series of proteins that determine compatibility. By joining the chain and donating down the line, on Dec. 6 at NewYork-Presbyterian Hospital, Josephine enabled Cesare to get a stronger match — three antigens instead of one. Her donation as a valued Type O then set off the final 11 transplants. Multimedia Interactive A Record Chain of Kidney Transplants. Links in the Chain Links in the ChainClose VideoSee More Videos » .Related Lack of Unified System Hampers Kidney Transplant Efforts (February 19, 2012) Readers’ Comments Readers shared their thoughts on this article. Read All Comments (202) » The registry did not charge transplant centers for its services until 2010, when Mr. Hil imposed fees to help cover costs. Hospitals now pay membership dues and a charge of $3,000 per transplant that is reimbursed by many private insurers but not by Medicare. The transplant recipients must be insured. Each year, the registry’s chains have grown longer, with Chain 124 topping the previous record by seven transplants. “We’ve just scratched the surface,” said Mr. Hil, who wears gold kidney-shaped cufflinks. Long transplant chains save more lives than short chains. But they come with trade-offs because the longer they grow, the higher the risk that a donor will renege or that a link will break for other reasons.

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The record-breaking chain survived its share of logistical setbacks. On Aug. 29, after the first five transplants, Mr. Hil lost a link because a donor could not take the necessary two to four weeks away from work. Later that day, he lost another when a transplant coordinator informed him that a potential recipient was an illegal immigrant and therefore could not be covered by Medicare. In late October, an entire segment fell apart when a donor at California Pacific Medical Center in San Francisco backed out for unexplained “personal reasons.” It was as if one domino had fallen short of the next, leaving those still standing frozen in place. “This makes us all sick,” Dr. Steven Katznelson e-mailed Mr. Hil. “We did not see this coming.” “Wow,” Mr. Hil wrote back. The donor “just put 23 patients at risk.” The dependency of each link on the others kept patients on edge. “Things can happen,” Candice Ryan fretted a few days before her Dec. 5 transplant at Massachusetts General Hospital. “You just pray that everything goes well. I can’t relax until I’m asleep and on the table.” Depending on the makeup of his registry at any moment, Mr. Hil likes to stretch his chains as long as reasonable and then end them if a donor is difficult to match or if one chain is draining others of potential transplants. He does so by arranging for the final kidney to go to a fortunate transplant candidate like Mr. Terry who does not have a willing donor. The Initial Link Until recently, hospitals regularly turned away Good Samaritan donors on the working assumption that they were unstable. That has changed somewhat with experience. But when Rick Ruzzamenti showed up at Riverside Community Hospital asking to give a kidney to anyone in need, he still underwent rounds of psychological screening as well as medical tests. The doctors and social workers did not know what to make of Mr. Ruzzamenti at first. He had a flat affect and an arid wit, and did not open up right away. As the hospital’s transplant coordinator, Shannon White, pressed him about his motivations and expectations, he explained that h is decision seemed rather obvious. “People think it’s so odd that I’m donating a kidney,” Mr. Ruzzamenti told her. “I think it’s so odd that they think it’s so odd.” The hospital wanted to make sure that he was not expecting glory, or even gratitude. Mr. Ruzzamenti stressed that no one should mistake him for a saint. He had, after all, been a heavy drinker in his youth and had caroused his way through the Navy. He could be an unsmiling presence at work, where he helped manage a family electrical contracting business. He admitted that he did not visit his parents or grandmother enough. Despite his occasional surliness, Mr. Ruzzamenti said he felt driven to help others when possible. And as he considered the relative risks and benefits of organ donation, particularly to relieve a whole chain of suffering, it just made so much sense. “It causes a shift in the world,” he said. Multimedia Interactive A Record Chain of Kidney Transplants. Links in the Chain Links in the ChainClose VideoSee More Videos » .Related Lack of Unified System Hampers Kidney Transplant Efforts (February 19, 2012) Readers’ Comments Readers shared their thoughts on this article. Read All Comments (202) » Perhaps, he said, there was some influence from a Tibetan meditation he had practiced when he was first drawn to Buddhism six years ago. It is known as Tonglen. “You think of the pain someone’s in, and imagine you take it from them and give them back good,” he said. Mr. Ruzzamenti said he was in a position to donate only because the economy had dried up so much of his work. He was essentially unemployed and could take time off to recuperate. The 30 kidney recipients, he observed dryly, could “all thank the recession.” When Mr. Ruzzamenti told his wife, My Nhanh, about his plans, she made it abundantly clear, despite her rudimentary English, that she would leave him and return to Vietnam if he followed through. She had immigrated only eight months before, after a marriage largely arranged by the Buddhist temple where Mr. Ruzzamenti volunteered as a groundskeeper. If he died on the table, she demanded, how would she get by in a country where she felt so out of place?

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“I wanted to scare him,” Ms. Ruzzamenti, who is known as Lucy, said as she combed her husband’s close-cropped hair with her fingers. “And to tell him that it scares me.” Mr. Ruzzamenti was impressed by his petite wife’s ferocity — “She’s a bully,” he said — but he disregarded her threat. He knew research showed that the risk of death from kidney retrieval surgery was 3 in 10,000 and that people with one kidney live as long as those with two. To him, there was little doubt that any good he created would far outweigh any temporary discomfort to him or his wife. As it happened, Mr. Ruzzamenti experienced an unusual level of pain during his recuperation at Riverside. It sometimes left him balled up in agony, and the Demerol only made him hallucinate. He did not really want company. But when the pain stirred him awake at night, he could see Lucy sleeping in the hospital bed beside his. Acts of Devotion There were other love stories along the way. Gregory Person and Zenovia Duke, both now 38, had been junior high prom dates in 1987 in Astoria, Queens. They lost touch and then reconnected on Facebook after each had divorced. They saw each other occasionally, but he lived in Queens and she near Albany, so the relationship never got serious. Not long after they reconnected, Mr. Person’s half-sister died of kidney failure and he pledged to help someone else beat the disease if ever given the chance. Then Ms. Duke learned that she needed a transplant. On Aug. 31, Ms. Duke received a kidney from a woman in California and Mr. Person sent his to Ohio. As they recuperated at NewYork-Presbyterian, Mr. Person found himself regularly hobbling down to her room. Once they were both back on their feet, they started dating more regularly. “I’ve never had any person in my life actually do what they say they’re going to do,” Ms. Duke said, “especially men. It spoke volumes that he was a man of his word.” It was a different kind of devotion that led David Madosh, 47, to donate a kidney for Brooke Kitzman, 30. Their four-year relationship, which had produced a 2-year-old daughter, soured just as he was getting tested as a potential donor. The breakup, caused partly by the strains of her illness, was ugly enough that when Ms. Kitzman later matched to become part of the chain, she put the odds at no better than 50-50 that Mr. Madosh would still donate. But Mr. Madosh, who lost his mother when he was 5, did not want his daughter, Elsie, to lose hers. The youngest of 12 children, he said he had been passed from one foster home to the next, eight in all, some that he described as little more than labor camps. “I don’t want my daughter to have to experience that,” said Mr. Madosh, a tree cutter by trade. “No matter what it takes, a daughter needs her mother.” Ms. Kitzman said she was grateful for Mr. Madosh’s kidney, and had told him so when they visited in a hospital corridor. But both made it clear that his act of charity had barely eased the tension between them. Mr. Madosh said he took satisfaction enough from seeing Elsie at play with her re-energized mother. “When her mama comes to get her, and she gives her hugs and kisses, that’s it right there,” he said. Multimedia Interactive A Record Chain of Kidney Transplants. Links in the Chain Links in the ChainClose VideoSee More Videos » .Related Lack of Unified System Hampers Kidney Transplant Efforts (February 19, 2012) Readers’ Comments Readers shared their thoughts on this article. Read All Comments (202) » A Wish Come True On Dec. 19, Chain 124 hurtled toward its conclusion with a final flurry of procedures at Ronald Reagan U.C.L.A. Medical Center in Los Angeles. Between dawn and dusk, three kidneys were removed and three were transplanted in neighboring operating rooms. One flew in from San Francisco. The last took off for O’Hare. At the end of the cluster were Keith Zimmerman, 53, a bearish, good-humored man with a billy-goat’s beard, and his older sister, Sherry Gluchowski, 59. She had recently moved from California to Texas but returned to donate her kidney.

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The siblings had always been close, although family members marveled at their ability to bicker for 15 minutes over the proper way to construct a peanut butter sandwich. Their mother, Elsa Rickards, remembered teaching them as children “that they might not have their mommy and daddy all the time, but they will always have each other.” Mr. Zimmerman, who runs a repossession firm with his wife in Santa Clarita, had been given a diagnosis of kidney disease 25 years ago. With the help of a nutritionist, he had managed to avoid dialysis until the very last day before his transplant, when his doctor said the procedure was needed to clear his body of excess fluid. In his hospital room before surgery, with seven family members shoehorned into every nook, Mr. Zimmerman calmed his nerves by listening to Aaron Neville on his iPod. He said he considered himself “the lottery winner” in the chain because his kidney would be coming from a healthy 28-year-old, Conor Bidelspach of Bend, Ore. The surgery to remove a kidney, known as a nephrectomy, is remarkably bloodless these days. With Mr. Bidelspach on the table, Dr. Peter G. Schulam cut four dime-sized incisions on the left side of the abdomen. Through tubes inserted in the openings, the surgeon and his team maneuvered their cauterizing scalpels and a laparoscopic camera, which relayed images of Mr. Bidelspach’s insides to monitors overhead. The scalpel’s superheated pincers clamped down like crab claws, searing the kidney from surrounding tissue. There was no need to cut any muscle. Once the kidney was free of connective tissue, Dr. Schulam clamped and snipped the renal artery and vein and ureter. He captured the kidney in a plastic bag, cinched it shut, and withdrew it quickly through a finger-length incision along the pelvic line. The doctor poured the kidney into a bowl of ice and drained it of remaining blood. The slush in the blue bowl turned fruit-punch pink. As others stitched up Mr. Bidelspach, Dr. Schulam wheeled the kidney on a cart into an adjoining operating room, where Mr. Zimmerman was already anesthetized. After stretching a hole in Mr. Zimmerman’s midsection with a metal retractor, Dr. Jeffrey L. Veale lowered the kidney into place and sewed in the renal artery and vein. As soon as he unclamped them, the kidney pinked up with blood flow. Before attaching the ureter to the bladder, he gently massaged the tip of the narrow tube between two fingers and watched it spurt a few drops of urine. “No more dialysis for Mr. Zimmerman,” Dr. Veale declared. “This total stranger’s kidney is making him pee.” He left Mr. Zimmerman’s own kidneys to shrivel harmlessly in place (removing them would add to surgical risk). Meanwhile, Dr. Schulam was in yet another operating room removing Ms. Gluchowski’s kidney. He placed it in a plastic bag filled with a preservative solution and knotted it shut, like a goldfish brought home from the pet store. It was packed in a plastic tub, topped with ice, and loaded into a cardboard box marked “Left Kidney — Donated Human Organ/Tissue for Transplant — Keep Upright.”

pkdkidney.blogspot.com/2012/02/kidney-transplant-chain-sets-record.htm Tuesday, February 21, 2012 Kidney Transplant Chain Sets Record This gives me such hope and don't know why we have not gotten together like this before.... There are 90,000 people in the United States waiting for a kidney and all it takes is one stranger to begin a chain of events that has the potential to save an ever-growing number of lives.

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Rick Ruzzamenti was the first link in the longest such chain so far -- known in this case as chain No. 124, as The New York Times first reported, a stranger who began a domino effect of generosity spanning across the country.

renaltsar.blogspot.com/ My unit won't let me dialyse at home- Why not? 'I want to dialysis at Home – but my unit is not keen saying that although I am a suitable patient they do not have the Nurses or the resource for such an experiment – neither could they afford it. I am very disappointed, particularly as I would have thought dialysing at home was cheaper for the trust. I certainly think that it would be better for me. I do not wish to name my Trust as I don’t want to rock any boats – but the decision has made me very sad.' Dear Mr. D, I got your question the evening Marie my wife and I were decorating our Christmas tree. We were excitedly putting the lights and trinkets that bought back memories. I told Marie about your predicament, and she got angry. I was frustrated given all the work the Kidney Community has done to promote access to home haemodialysis. There we were like millions of others preparing for the family to descend for Christmas, thinking about parents, brothers, sisters, children and even grandchildren but not really concerned about travelling for the holidays. Absolutely no thought about dietary or fluid restrictions - well we thought about food and drink but not about any restrictions. In addition, there in my inbox was your question. It did make me sad that you too were not able to have Christmas looking after yourself, dialysing when you wanted to in your own home with your family and friends. The National Service Framework for renal services was published almost exactly 8 years ago. One of its key aims was to improve the outcomes for people on dialysis and to maximise their rehabilitation, quality of life and survival (standard 4). This standard requires that high quality clinically appropriate dialysis is designed around individual needs and preferences. Care should be responsive to individuals’ needs and personal preferences so that their choice of clinical appropriate treatment options can be delivered (standard 2). These entitlements have now been further strengthened in the NHS constitution that puts patients at the centre of the system- why else is the NHS there? In addition, the constitution claims quality is the only organising principle of the NHS. It should be but we are not there yet! Home dialysis offers a range of benefits for suitable patients, tailoring dialysis to individual needs, avoiding transport costs and inconvenience and allowing the individual to be more in control of their own treatment, health and life. Many home haemodialysis patients find their energy levels restored and all enjoy the relaxation in fluid and diet restrictions that follow being established on home treatment. Stopping phosphate binders and needing far fewer drugs overall makes it easier to remember and take those still needed. Several recent scientific studies have also shown improvement in patient survival and a reduction in hospitalisation for those on home haemodialysis. Most kidney nurses and doctors would argue that for those who are clinically suitable for home therapy, treatment at home is the best medical choice for them. When kidney doctors have been asked, “what kind of dialysis treatment would you choose for yourself if you needed it?” the majority opted for home haemodialysis. Patient stories are the most powerful of all. Comments such as “it’s as good as being transplanted” and “it’s given me my life back” are the rule. Jonathan Hope from Guys hospital said to me recently “my life was utterly transformed - I could eat and drink what I wanted, my medications were reduced, I visited hospital less, my symptom burden improved, I had a lot more energy and finally for the first time in 15 years, I began to live my life to the full! " Of course, not every patient is suitable for home dialysis and not all who are suitable want to take on the role. The impact on carers needs to be carefully considered and discussed. If people do not wish to dialyse at home, they should not have to. Choice means choice. To make informed choice individuals need to understand the treatment options, and their clinical, psychological and social suitability for each potential option. Shared decision-making can then take place. Shared decision-making is a fundamental part of care planning and promotes the best choice in what otherwise can be a complex and overwhelming situation. The care team communicates to the patient personalised information about the options, outcomes, probabilities and scientific uncertainties of the various treatments. The patient communicates his/her values and relative importance he/she places on the potential benefits and harms. The patient needs

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time, digestible relevant information and support; the healthcare system and individual health care practitioners need systematic tools such as patient decision aids, consultation skills, particularly active listening and the detailed clinical knowledge to manage the specific and at times complex and competing challenges of their many facets of advanced kidney disease. Your comments about quality and costs are spot on. For those that can and want to dialysis at home it offers better quality than hospital-based dialysis and its certainly less expensive. Neither is it experimental. When dialysis started in the 1970s, it was exclusively a home based therapy. Back then, patients and carers had to build the dialysis machine for each session and the technical demands were much greater. With the introduction of peritoneal dialysis and improvements in transplantation, home haemodialysis did become the poor relation. The number of home haemodialysis patients fell but over the last decade since the publication of the National Service Framework, NICE guidelines and the work of NHS Kidney Care, the proportion of people opting for and benefiting from home haemodialysis has again begun to rise. A recent change to the payment systems for trusts makes it an even more attractive option and ensures that trusts will not lose income. Therefore, costs should not be a factor in reaching a decision on what form of dialysis to receive. My advice is “rock that boat” or get a NKF Advocacy Officer to rock it for you and others. The way you were treated is unacceptable and intolerable. The NHS is there for patients not the other way round. Recently, a colleague described the beginning of shared decision-making as the doctors getting down from their pedestals and the patient getting up from their knees. Quality can be the only organising principle of the NHS but that will only happen when we all demand a patient centred service where every clinical interaction is about adding value. Stand up and be heard- not only will it benefit you, it will also improve things for people following your example. My PA, Anne, said “who’s unit is this anyway? They should be named and shamed!” Published in Kidney Life Spring 2012 0 comments Links to this post Labels: February 2012, Questions and Answers Friday, 17 February 2012 Adding Value: The National Kidney Care Quality Innovation, Productivity and Prevention Plan It is now over 8 years since the national service framework for kidney services was published and we have come along way. Chronic kidney disease is seen as common, harmful and treatable and acute kidney injury is on the map. The times they are, a changing and kidney care is leading the way, from a 20th century cure paradigm many of us were trained and grew up in, to a 21st century chronic disease management model of care. This is a cause for celebration. The shift from exclusively cure to care has expanded our focus from the kidney to the person, carers and family of those with kidney disease. Patients working with the health care team as equal partners, reaching shared decisions and tackling the complexity of kidney disease together as a local care team and national kidney care community. The change in culture from a traditional medical model to a holistic patient centred approach where every clinical interaction should be measured by “Did it add value for the patient?” is I believe our biggest challenge. However, the Nicholson challenge, to save £20 billion over the next 4 years, the changes to the structures of the NHS arising from the Health and Social Care Bill before parliament and the response to the systemic quality failures that the Mid Staffordshire enquiry has revealed are all affecting how kidney care is delivered, the experience and outcomes our patients receive.

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I recently asked an audience “How many of you believe quality is the only organising principle of the NHS?” Not many hands went up. Then I changed it to “Would you like quality to be the organising principle of the NHS?” They all went up. The paradox is that we are the system- the NHS is its people and collectively we are the only ones who can achieve that goal. Putting quality centre stage is the aim of the National Kidney Care Quality Innovation Productivity and Prevention plan. The plan is an aggregative of the best elements of the Regional and Kidney Care Network plans developed over the last 2 years. It identifies nine key tasks across the patient pathway that will drive improvement in care and provide value for money. Where it is possible, prevention is the best medicine and it is certainly the cheapest! Innovation Health and Wealth, the NHS report for the prime minister highlights home haemodialysis and virtual kidney care clinics. It makes the case for innovation to improve outcomes within our current resource constraints. The kidney care national plan builds on the recommendations in this report and brings together much of the learning about the importance of preparation and choice, personalised dialysis prescriptions, early transplantation and conservative kidney care. It is neither a new set of targets nor a bureaucratic paper exercise. It sets ambitious but achievable goals based on the NICE chronic kidney disease quality standards, which taken together provide a measure of the quality of kidney care. The plan provides a national template of what we know will improve kidney care. Most units I hope will already be addressing some of these issues. How to achieve the best live donor pre-emptive transplant rate, the best patient satisfaction with the dialysis transport or integration with primary care to prevent progressive kidney disease and reduce ‘Crash Landers’ can only be determined and delivered locally. Your actions in individual patient encounters and as a member of the multi-professional team can make the difference between chaotic care and quality care.

Thekidneyboy Hope For Others I went in for my routine checkup at the Transplant Clinic the other day. As for me, things are great - six months out, labs are awesome.... my blood pressure is amazing. If I keep losing weight, they may take me off it entirely. Which is a crazy concept for me! I've been on some for almost a decade now.... But this isn't about me. I'm very happy that things are still going well for my transplant. This is about the waiting room. I was sitting in the waiting room, (waiting, appropriately) when there was a young girl and her mother sitting in the room, reading over the massive amounts of literature that they give you when expecting a transplant. She must have been between 15-17. She was really young - and she seemed upbeat, but was getting a little worried about all the rules and regulations that come with having a transplant. Another patient and I who were waiting started to talk to her about it, and we were all laughing in a few minutes. She said "Well, it's better than dialysis, right?" "Hoo yeah, " I whistled.

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She asked me how long I'd been on it. I told her a total of five years.... turns out, she'd only been on it since December. She was getting a live donation next Thursday - from her aunt. I was so happy for her - what an amazing gift. Though I was sad to - someone so young and exuberant had to endure all of this. I thought I dealt with it pretty young, but she was just a teenage girl. Of course, my mind wandered to all the youngsters who have had to deal with this. Jordan and I have a friend who has been on dialysis since he was a baby - and had several kidney transplants. I think of him everyday, and how he's struggled but he's made a life for himself through incredible adversity. This disease is really hard - sure there are treatments, but there are no cures. A transplant isn't a simple guarantee or a permanent fix. It's a borrowed gift, and you have to maintain it. It's another form of treatment. All of use will be dealing with all our lives. Me, Our Friend and this girls. Hundreds of Thousands across The United States of America. Millions around the world. I know people don't know much about organ failure, and kidney failure in general. I still get asked all the time by people "How's Your Liver?" or they accuse me of drinking myself into kidney failure.... it's quite annoying. But that's how people deal with disease.... even when someone gets cancer, many times they'll say something like "He smoked himself into it!" or "He ate carcinogenic food!".... it's just a way people deal with it. It's easier to put the blame on someone else, rather than realize that it could happen to themselves. Disease can, and does, strike anyone, anywhere, at anytime. It's a hard fact of life. But you can survive. You can go on. I wish this girl so much luck and love from the bottom of my heart. I hope things go well, she goes to school, has fun, falls in love and does all those other things that make life the amazing and grand adventure that it is. I hope that others will not live in fear of disease, but give of themselves when they can to those who do have to fight it. I hope that scientists can work to find a "cure" for kidney disease, and other organ failures. I hope - and that is what keeps me alive and going in the most trying of times. ~Steve

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Appendix B Keyword List Anemia Anemia Management Dialysis facility/ center/ in-center/ unit Kidney ESRD End-stage renal disease patient Kidney beneficiary Kidney consumer Quality of Care Quality of Life Staff-related concerns Health-related concerns Safety Grievance Professionalism Non-compliance Patient satisfaction Satisfied with care Dissatisfied with care Patient attitude Patient communication Patient and staff communication Patient fear Patient anger Physical environment Dying Clinical competency Competent staff Incompetent staff

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Untrained staff Trust staff Distrust staff Infection control Hospitalization Staff to patient ratio Staffing Physician relations Doctor relations Scheduling Bleeding Sticking Bad stick Stupid tech Stupid technician Stupid nurse Mad at tech Mad at technician Mad at nurse Misunderstanding Access issues Understanding treatment Understanding lab values Facility policies Machine breakdown Getting on late Scared they’ll kill me Staff Tech Nurse doesn’t wash hands No unit will take me

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Good staff Good caregivers Disrespectful Staff does care Staff cares Good facility Good dialysis unit Bundling Changes in meds Change in EPO dosage Changes in what patient pays for Patient rights Advocacy for self care Understanding anemia Bugs in unit Infiltration Infections Hospitalized due to infection Hospitalized due to bleeding Hospitalized due to infiltration Hospitalized due to bad stick Coping with dialysis New dialysis experience New dialysis patient Peer support in unit Support groups Care transitions Information from the hospital to dialysis unit Fun at dialysis unit Friends at dialysis unit Self care at dialysis unit

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High staff turnover at dialysis unit Getting a fistula Learning about Access options Understanding access options Understanding treatment options Patient involvement in treatment choice Patient understanding of hemodialysis Patient understanding of peritoneal dialysis Patient understanding of home dialysis Patient understanding of transplant Patient involvement in self-care Patient Empowerment Take control of care Take charge of care Concern for dialysis patient Concern for dialysis family member Staff violation of confidentiality KDQOL – 36 KDQOL CAHPS Patient satisfaction tools Holding access site Wearing gloves Catheter covers Cath covers Medication changes Changes in dialyzer size Mental health Missing treatment Shortening treatment Depression

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Anxiety Pain control Pain issues Patient culture Staff culture Health –related quality of life Experience of care Inappropriate staff comments Assistance for transfer EPO Difficulty finding a unit Relationship with staff Self- management Medical self-management Transplant Transplantation Types of treatment Incenter hemodialysis Home dialysis PD Peritoneal dialysis CAPD CCPD Transplant Medication reconciliation

Added keywords: Diet and Cycler