in this issue of transplant chronicles . . . (for web) · in this issue of transplant chronicles ....

In this issue of Transplant Chronicles . . . (for web)

WINTER 2004 • VOLUME 11 • NUMBER 3

Obesity page # 3 Smoking 4 Steroid-free 11 Exercise 13 Hypnosis 16

Published by the for transplant recipients of all organs and their families.© Copyright 2004National Kidney Foundation ISSN# 1524-7635

01-70-1103

Transplant Chronicles is a Program of the National Kidney Foundation.Winter 2004Volume 11, Number 3

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I Endured the Storm of Chronic Kidney FailureBy Being Captain of My Ship

■ By Tamra Lewis

Monday my husband rushed meto the emergency room because

I could not breathe. It was unbeliev-able. My blood pressure was so high,and at 43 I had no idea that I hadhigh blood pressure. I realized that Ihad severe headaches and could hearmy heart beating. The high bloodpressure and stress had damaged my kidneys.

Wednesday, the doctors told me thatI had kidney failure and was going tobe on dialysis until I received atransplant. My destiny was up to me.I said the words, “I am captain of myship.” I had delivered a motivationalsession called “I Am Captain of My

Ship” hundreds of times to execu-tives, salespeople andemployees. I heard thewords as I was sayingthem, and they werereal for me. I wasable to find myway in just amatter of a fewhours. On theday of my diagnosis Igot a grip and realizedthat I was alive. I amcommitted to my lifeand the lives of my fam-ily, and I will persevere and not giveup. I will endure thestorms of life.

I became joyful and atpeace knowing that I wasliving during a time wheretechnology was awesome.My blood would becleansed and I could breatheand be happy again. I coulddo dialysis realizing that Iwas captain of my ship. Istarted to use my motivational speak-ing, sales training and creativity fordeveloping programs while at thedialysis unit.

Each time my nephrologists spoke tome about the importance of manag-ing my blood pressure, I listened.When the dietitian explained to meabout the foods that were good andbad for me and how to enjoy tasty

meals, I listened. My socialworker showed great concernfor my well being. She wasconstantly asking questions.When she talked to me, I lis-tened. My dialysis teambecame my crew, and I was

captain of my ship. I knew the importance

of packing for my life’sship. When I went to dialysis,

I had a large, camouflage armyduffel bag. I packed all the com-forts of home in that bag. Ipulled the bag on wheels whilepatients and staff would laugh atme because I would often say,

“This is war.” I packed the rightattitude with all of my stuff. I

packed my: sheet, pillow, blanket, audio tape player,audio tapes, books, pens, paper

and prayers.

I use to get to the dialysis unit everymorning at 4 a.m. to pray for other

In this volume ofTransplant Chronicles

➢ Learn about the best methods forquitting cigarettes on page 4

➢ Other than smoking, what is themost common cause of preventabledisease and death? Find out on page 3

➢ Turn to page 14 for legislativeupdates on the Organ Donation andRecovery Improvement Act and thenew Medicare bill.

Continued on page12

editor’s desk editor’s desk

Woodrow Wilson once wrote,“Without enthusiasm there is

no progress in the world.” So it iswith enthusiasm that we ring in thisNew Year and hope you all hadhappy holidays. As you may know,there have been some changes on theTransplant Chronicles editorialboard. It was with gratitude that wesaid thank you to BeverlyKirkpatrick, the longtime Editor-in-Chief of Transplant Chronicles.Beverly continues to be a strong supporter and mentor to the membersof the board.

Laurel WilliamsEditor-in-ChiefRN, MSN, CCTC

2 Transplant Chronicles, Vol. 11, No. 3

Transplant Chronicles is published by the NationalKidney Foundation, Inc.

Opinions expressed in this publication do not necessarily represent the position of the National Kidney Foundation, Inc.

Volunteer Editorial Board:Laurel Williams, RN, MSN, CCTCEditor-in-ChiefUniversity of Nebraska Medical CenterOmaha, NE

Kay Atkins, MS, RDBanner Good Samaritan Transplant ServicesPhoenix, AZ

Warren Brown, MSJArlington, VA

Ronald N. Ehrle, RN, BSN, CPTCLifeGift Organ Donation CenterFort Worth, TX

Robert Gaston, MDUniversity of AlabamaDivision of NephrologyBirmingham, AL

Oliva Alban Kuester, MSW, CSWUniversity of MichiganAnn Arbor, MI

David J. Post, PharmD, BCPSMayo Clinic HospitalPhoenix, AZ

Victoria L. Schieck, RN, BSNUniversity of Michigan Health SystemAnn Arbor, MI

Debra J. Tarara, RN, BSN, CCTCMayo ClinicRochester, MN

Lara Tushla, LCSW, MSWSt. Luke’s Medical Center Rush PresbyterianChicago, IL

Chris L. Wells, PhD, CCS, ATCUniversity of MarylandBaltimore, MD

Geri L. Wood, PhD, RN, FAANUniversity of Texas Health Science CenterHouston, TX

Jim Warren, MSTransplant NewsFresno, CA

Editorial Office:National Kidney Foundation, Inc.30 E. 33rd Street, New York, NY 10016800-622-9010, 212-889-2210www.kidney.org

Editorial Director: Catherine Paykin, MSSW

Executive Editor: Gigi Politoski

Managing Editor: Sara Kosowsky

Publications Manager: Will Comerford

Production Manager: Sunil Vyas

Design Director: Oumaya Abi Saab

Editorial Assistant: Helen C. Packard

We have added some new and willing volunteers who join with the“old” to enthusiastically bring excit-ing new information and resources tothe readership. We welcome yourideas and suggestions and ask you to join with us to make this the best newsletter possible. From theeditorial board and staff of theNational Kidney Foundation, wewish you an exciting and enthusiasticyear filled with good health, muchhappiness and good reading!

Laurel Williamsfor the Editorial [email protected]

TC

Let Your Voice Be Heard!

Q: Do you have experiencesand tips to share on how you overcame

habits that affected your health? Respondonline at www.recipientvoices.org

The following response was posted onlinein response to the last issue’s question: "Ifyou received a live donor organ, has yourrelationship with your living donorchanged over time?"

I received a kidney from my mom 11years ago. At that time, we didn't have agreat relationship. We always loved eachother, but weren't the best of friends. Iwas very hesitant about having my momgive me a kidney, in case something wereto happen to her. Since my mom gave methe kidney, we have matured into bestfriends. My mom felt really good abouthelping to improve the quality of my life.In turn, I was so grateful for the chance togo back to school and become a regis-tered nurse, which I have been for thepast six years. My mom and I have onlyhad positive things happen in our relation-ship since the transplant. I know what mymom gave up for me took strength andlove, and it is something I will never takefor granted.

—Cindy Fernandez

We are delighted to intro-duce Laurel Williams,

RN, MSN, CCTC, as thenewly appointed Editor-in-Chief of Transplant Chronicles.Laurel has been the NursingEditor of Transplant Chroniclessince 1993. As a nurse andtransplant coordinator, shebrings a wealth of experience tothe newsletter. Currently sheworks as the Manager ofTransplant Coordinators forthe University of Nebraska’sMulti Center Organ TransplantProgram. Laurel was formerlythe president of the NorthAmerican TransplantCoordinators Organization(NATCO), and she is the 2003 winner of the NATCO/Novartis Lifetime AchievementAward.

WELCOME,Laurel!

Transplant Chronicles, Vol. 11, No. 3 3

eating righteating rightObesity in Kidney Transplantation:

Issues for Recipients and Donors■ By Julie Heimbach, MD

Obesity in the United States hasincreased dramatically over the

past two decades, and now representsone of the greatest risks to the health ofAmericans. Obesity is defined as abody mass index (BMI) greater than30. The BMI is an estimate of a per-son’s body fat based on height andweight. Currently, 61 percent of adultsand 14 percent of children are over-weight or obese. These numbers have nearly tripled during the past 20years and continue to increase at analarming rate.

The epidemic of obesity in the U.S. isalso beginning to be seen throughoutthe world. Many believe that theincrease in obesity is related to inactivelifestyles and increased availability offood. Most Americans are not active,and modern conveniences such as ele-vators, riding lawn mowers and remotecontrols only serve to exacerbate theproblem. While in the past energy wasexpended without thought at work orat home, the population is now moresedentary and is surrounded by calorie-dense foods offered in larger and largerportions.

The consequences of obesity are graveand include increased risk for diabetes,heart disease, stroke, cancer and pre-mature death. The prevalence of dia-betes, a leading cause of kidney fail-ure, has increased from 9 million in1991 to 15 million in 2001. In fact, itis estimated that obesity will sooneclipse smoking as the leading cause ofpreventable disease and death.

The proportion of patients with kidneyfailure who are overweight or obesemirrors that of the general population.In 1987, 10 percent of patients receiv-ing kidney transplants were consideredobese, while in 2001, obese patientsrepresented almost 25 percent of recip-ients. Traditionally, many centers have

refused kidney transplantation forobese patients, as early experiencesdemonstrated the outcomes to be poorcompared to non-obese recipients.Many centers asked patients to loseweight prior to being considered fortransplantation. However, studies haveshown that most patients who are ondialysis are unable to lose weight. Inaddition, studies have demonstratedthat increased time on dialysis leads topoorer outcomes for patients.

More recently, data have shown thatwith careful evaluation for heart dis-ease, obese patients can receive kidneytransplants safely withgood outcomes,though they are at ahigher risk for woundhealing problems andother complications.Many centers (thoughnot all) now treatobese patients likeother higher riskgroups, such as patients with diabetesor those who are elderly, and do notdeny access to kidney transplantationbased on obesity alone. Ideally, obesepatients would undergo transplantationwith a living donor after careful med-ical evaluation. Frequent re-evaluationwith attention to heart disease shouldbe performed if a patient has a pro-longed wait for a deceased donor kid-ney transplant.

How does the epidemic of obesityaffect potential kidney donors?Traditionally, only young, healthy,non-obese people have been consid-ered for living donation. This insuredthe least potential harm to the donor, inaddition to providing the best possiblekidney for the recipient. The advent oflaparoscopic surgery, which allows thekidney to be removed through a small-er incision, has made kidney donationpossible for obese people. Short-term

studies have shown this procedure issafe and feasible in obese donors,though there is an increased risk ofwound complications. Long-term stud-ies for obese kidney donors are not yetavailable. Some centers will accept anobese donor who is otherwise in perfecthealth, though outcomes over the longterm will need to be closely followed.

Surgical treatment of obesity gastricbypass surgery emerged as a high-riskbut successful approach to severe obe-sity. One procedure, called Jejunal-IlealBypass, is no longer performed becauseit caused many complications, includ-

ing the risk of kidney failure.Today, obesity is sometimes treat-ed with a Roux-en-Y GastricBypass, which makes the stom-ach into a very small pouch andbypasses a short segment of theintestine. This newer type of sur-gery is less risky, but the safetyfor patients who have had kidneytransplants or donated kidneys is

not known.

Ideally, overweight or obese patientswould proceed to kidney transplantand then begin an intensive “kidneyrehabilitation” program similar to car-diac rehabilitation programs; thesehave been shown to be successful. Thegoal would be to dramatically increasedaily exercise and modify dietaryintake. Overweight or obese donorscould also be eligible to participate.Few transplant centers currently havesuch programs, but with the explodingepidemic of obesity, this difficult prob-lem will need to be addressed asaggressively as possible.

About the AuthorJulie Heimbach, MD, completed herresidency training in general surgeryat the University of Colorado. She iscurrently a transplant surgery fellow atthe Mayo Clinic in Rochester,Minnesota.

TC


What if we talk about cancer? Notjust lung, but throat and stomach andbladder? What about heart attacks,strokes, amputations and emphysema?What if I could promise you an extrafew hundred dollars cash a year? Yes,I’m still talking about using tobac-co—or rather NOT using tobacco!The evidence is solid that tobacco isalways dangerous and ultimatelyexpensive—not only in terms of dol-lars, but also in terms of health.

If you are a smoker who wants toquit, it is best to first develop a “gameplan.” First, critically evaluate yoursmoking habit. Why did you startusing tobacco? Was it a social activityyou began at school, at work or withfamily members? Didsmoking build self-esteem or just “give yousomething to do”?Think about why youwant to quit. Patientswho have already expe-rienced a heart attack ordaily shortness ofbreath and coughing areoften motivated becausethey want to feel betterand live longer. Fortransplant patients whostruggle to pay for med-icines, cost of tobaccomay be a key motivator. Manywomen don’t like the skin changessmoking may cause. Many patientsare frustrated by their lack of controlover their habit. And of course, noone wants to be back on dialysis anysooner than they absolutely have to.Think about both the risks of smok-ing, and the reward of stopping. It isimportant for each smoker to have apersonally identified motive to stop!

Once you are sure you want to stop,identify how smoking (or chewing ordipping) fits into your daily routines.It is important to recognize all theplaces and times that you may growweak. Identify alternative activities tooccupy the hands, the mind or themouth at all key “trigger” places andtimes. If family members, co-workersand friends smoke, it is helpful if theywill commit to quitting, too, or atleast support your personal efforts.Many patients try to incorporate exer-cise into their routines as a substituteduring times they usually smoke.Some eat peppermints to reproducethe “mouth-tingling” associated withsmoking. Some choose nicotine gum,a substitute that will decrease both the

nicotine craving andoccupy the mouth.Some chew toothpicksto occupy both mouthand hands. You mustidentify your “weak-ness” and plan adefense.

Weight gain withsmoking cessation isoften a concern.Remember, the healthrisks of smoking faroutweigh any health

risk associated withweight gain. You will also smell betterand look younger. Diet and exercisechanges can accompany smoking ces-sation to help minimize weight gain,although these should not be yourfocus. Working with your transplantor renal dietitian on an ongoing basiscan be helpful, but to be successful,your focus should remain on smokingcessation.

Pharmacotherapy (medication) is nowrecognized as a safe and effective aidfor patients who want to stop smok-ing. Unless you smoke fewer than 10cigarettes per day, are pregnant orhave specific medical contraindica-tions, medication will enhance yourlikelihood of sustained success. Thereare five “first-line” agents now avail-able. Four products provide substitutenicotine to limit the physical symp-toms of withdrawal. Each of theseproducts uses a different “delivery”method:

➢ patches, available over the counter,allow nicotine absorption throughthe skin throughout the day.

➢ gum, inhalers or nasal sprays pro-vide “bursts” of nicotine absorptionthrough the oral or nasal linings orlung air sacs, more closely mimick-ing the physical effect of cigarettes.They are also available without aprescription.

➢ Bupropion SR a fifth option, isalso used as an antidepressant med-ication, but was introduced in 1997as an aid for smoking cessation. Itshould be begun approximately twoweeks before you plan to stopsmoking, is available only by pre-scription and should not be used bypatients with seizure disorders.

For most patients, it is safe to com-bine agents, but please discuss thiswith your physician. You may wish touse a patch for “all-day” nicotinerelease, but chew gum or use aninhaler to get instant relief of “crav-ings” at certain “trigger” times duringthe day. Two additional second linemedications have also been identified, which may be helpful for somepatients who fail smoking cessation

IF I TOLD YOU THAT EVERY CIGARETTE YOU SMOKED MEANT ONE DAY LESS

YOU LIVED, COULD YOU STOP? If I told you that each cigarette you smokedmeant one day sooner that you would return to dialysis, would you quit?

Live Longer, Live Better—Stop Smoking!■ By Shirley Schlessinger, MD, FACP

Tobaccouse also

contributesto chronic

renal failureand hastens

return todialysis aftertransplant.


with the first line choices. Clonidine,traditionally used for blood pressurecontrol, and nortryptyline, an anti-depressant, are both available by pre-scription only, and should always beused with physician’s supervision.Once you are sure you want to quittobacco, consider your options in phar-macotherapy and discuss them withyour doctor.

The final step in smoking cessation issetting your “target date.” Tell yourfamily and friends the day you’vemarked on your calendar to stop smok-ing. Remove all tobacco products fromyour home and work environment.Clean your car and home to remove thetobacco odors. Purchase your patchesand gum. Review again your triggertimes, and make sure you have gum oractivities readily available to substitutefor your cigarettes. If you have plannedwell, you WILL be successful!

Although the first few weeks withouttobacco are the toughest, relapse remainsa risk forever for the former nicotineaddict. Encourage your smoking friendsor family members to quit for your sakeif they won’t quit for their own.Continue to avoid places or people thatwill tempt you to resume tobacco usage.“Just one” is enough to resurrect the

addiction, and backsliding can occurafter many nicotine-free years.

Giving up cigarettes is the hardestthing your physician may ask you todo, but it is ultimately more importantthan weight loss, lipid control, influen-za vaccines or all the other healthmaintenance issues we spend so muchtime talking about. Heart diseaseaccounts for most “death with a func-tioning graft,” and it is also the mostcommon cause of death on dialysis.Tobacco usage dramatically increasesheart disease risk. Tobacco use alsocontributes to chronic renal failure andhastens return to dialysis after trans-plant. Don’t be a statistic. Live longer,live better, stop smoking. And you’llhave some extra money to help pay foryour medications for those extra yearsyour transplant functions!

For more information: www.surgeongeneral.gov/tobacco

About the AuthorDr. Schlessinger is the Associate Deanfor Graduate Medical Education andthe Medical Director, Renal Transp-lantation at the University ofMississippi Medical Center in Jackson,Mississippi.

TC

the factson cigarette

smoking

SMOKING is a chronic medicalcondition that afflicts approxi-mately one in four adult Americans.

TOBACCO is responsible for over440,000 deaths in the United Stateseach year.

OVER 70 PERCENT of US smok-ers have made at least one attemptto quit, and almost half try to quiteach year.

DESPITE AGGRESSIVE educa-tional campaigns about the dangersof smoking, adolescent use oftobacco products has actually risenover the last few years.

OVER 3,000 children and adoles-cents become regular tobacco usersdaily.

HEALTH CARE costs attributableto smoking exceed $50 billion dol-lars annually.

TOBACCO is the single greatestcause of disease and prematuredeath in America today!

Even medical issues as severe as a heart transplant are not enough to stop some people

from smoking.

According to an article by Carol Stilley, PhD, assistantprofessor of nursing and psychiatry at the Universityof Pittsburgh, 55 percent of heart transplant recipientsbegan smoking again after the transplant. While this islower than the return rate to smoking among the gen-eral population (90 percent), it is still “quite bad,”according to Mary Amanda Dew, PhD, principal inves-tigator of the study. “These patients had much moresevere heart disease than smokers in the general popu-lation, and the smoking contributed to the heart dis-ease. In addition, smoking post-transplant greatlyincreases the risk of complications includingcancer—much more so than in the general population,

because heart recipients are on immunosuppressantsand are already at heightened risk for cancer. Giventhese very life-threatening issues, it is striking that 55percent would return to smoking and it certainly atteststo the strength of the addictive powers of nicotine.”

The study found that the most common reasons forrecipients to take up smoking again were:

• a return to cigarettes after a brief abstinencearound the time of the transplant

• bouts of depression or anxiety within a few monthsof the transplant

• a caregiver who smokes.

Stilley and Dew’s article was published in a 2002issue of Journal of Heart and Lung Transplantation,volume 21, issue 81.

TC

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Our Transplant Journey■ By Rich Ostry

As her kidney function declined, westarted to look for hospitals to getCathy on a transplant list. I was testedto see if I was a match for her. Theresults came back that we matched inblood values and that our bloods werenot allergic to each other. With all thenew medicines available today, we didnot have to be as closely matched as in the past. We then scheduled thetransplant.

I was lucky, because our transplantcenter had just done its first laparo-scopic kidney donation. I would betheir sixth laparoscopic donation.Instead of having a 10-inch opening, Ihad a two-inch opening and four smallholes, which only needed a bandageafterward.

The day before the transplant we didall the pre-testing and stayed close tothe hospital. Cathy had a small complica-tion—therewas somefluid in herlungs. Thatnight theywere able toremove the fluid, so they did not haveto postpone the operation.

I was taken to the operating room at 6a.m., and surgery started at 7. Cathywas brought to the operating room afew hours later. Within a few hours ofmy surgery my kidney becameCathy’s. The surgery went great forboth Cathy and me. It is amazing howmany tubes are attached to you whenyou wake up.

Cathy, like all transplant patients, hadto start taking medication immediately.Her brother, also a transplant recipient,

had struggled with his many antirejec-tion medications, but she was able totry a new medicine (mycophendatemofetol) in a clinical trial.

I was able to return home two daysafter the operation. Cathy came home

the next day. Those next fewweeks we visited the transplant clinicthree times a week for blood tests tocheck on Cathy’s values and additionaltest medicines. Taking care of some-one, especially when I myself wasrecovering is not easy, but fortunatelyher mother was able to help.

Cathy did have an episode of rejection,but it was caught very early. She wastreated at home by a visiting nurse fortwo weeks. Since then, things havebeen very good.

In 2002 we had one of the greatestexperiences since the transplant. We

participated in the US TransplantGames in Orlando. We were membersof Team Illinois, Cathy as an athleteand I as a living donor. The openingceremonies were very emotional. Wewalked into the stadium holdinghands, waving to family members andfeeling great. Cathy ran over to shakehands with Chris Klug and SeanElliott on the way in. The greatest partwas watching the donor families andliving donors enter the stadium know-ing that they had made this celebrationof life possible.

Cathy participated in bowling. She didgreat—she even bowled a 212 game. Iwas very proud of her. I kept thinkingof all that we have been through, fromthat day in March 1997 and hemodial-ysis to Cathy bowling in the TransplantGames. We had come full circle. Aftershe finished bowling, her family mem-bers who came to Orlando went out forlunch with us, and we had a great timethe rest of the day.

It has been five and a half years sincethe transplant, and both of us are doingvery well. The new medicines that areavailable today are even better thanwhat Cathy is taking. They are trulyamazing—living donors do not have tomatch as closely as was needed just afew years ago, and the surgical tech-niques are far better, with shorter hos-pital stays needed.

We are also very thankful for Cathy’sdoctors and nurses, our families andWalt Disney World. Going there was agoal that Cathy strived for and reachedjust months after her transplant. Mostof all, I am thankful for Cathy: Ialways knew that Cathy was a verystrong person, but as every day goes byI am awestruck by how she getsstronger every day. She truly is myhero and I love her very much!

Rich and Cathy Ostry live in Illinois.

TC

Rich and Cathy Ostry went toWalt Disney World in Orlando a few

months after her transplant, and again forthe 2002 U.S. Transplant Games, when

this picture was taken.

Imet Cathy in 1988 and 11 months later we were married.Cathy was diagnosed a few months later with Focal

Glomerular Nephritis. She was able to keep it in check forseven years with diet control.


Surprise! Senate passes firstsignificant organ transplantlegislation in more than adecade

The U.S. Senate’s Nov. 25approval of a national transplantbill is almost certain to be fol-lowed by passage in the House ofRepresentatives, which wouldmake it the most important trans-plant-related bill to pass both hous-es since the TransplantAmendments Act of 1990.

The bill—the Donation andRecovery Improvement Act(S. 573) —was guided through themaze of pre-Thanksgiving legisla-tive frenzy by Senate MajorityLeader Bill Frist (R-TN), SenatorJudd Gregg (R-NH), chairman ofthe Senate Health, Education, Laborand Pensions Committee, SenatorEdward Kennedy (D-MA), rankingmember of the committee, andSenator Christopher Dodd (D-CT).

The legislation authorizes $25 million to be appropriated for carrying out a variety of provisionsincluding:

$5 million for reimbursement oftravel and subsistence expensesincurred by living donors;$3 million for funding to hospi-tals to hire in-house organ pro-curement coordinators;$15 million in grants for devel-oping public awareness pro-grams and demonstration proj-ects to increase organ donation;

$2 million in support for stud-ies on increasing organ dona-tion, and improve the recovery,preservation and transportationof organs.

The bill also calls for developmentof a means to evaluate long-termeffects associated with living organdonation by individuals whobecome donors.

The one provision anticipated bymany and dreaded by others—funding for a demonstration proj-ect on determining if offeringfinancial incentives will increasethe number of deceased donors—never made it out of committee.

According to insiders familiar withthe committee’s deliberations,Senators Gregg and Kennedy werestrongly opposed to allowing atrial, while Frist and Secretary ofHealth and Human Services (HHS)Tommy Thompson supportedincluding a provision on seekingproposals to hold a demonstrationproject.

The bill contains a provision call-ing for the HHS Secretary to studythe “ethical implications of propos-als to increase cadaveric (sic)donation that may disproportion-ately affect certain populations”which might be construed by someto include holding an organ dona-tion financial incentives trial in thefuture.

New CMS regulations gov-erning OPOs, transplant cen-ters expected this year New regulations governing USorgan procurement organizations(OPOs) and transplant centers arein the process of being reviewedby various governmental agen-cies and could finally be issuedsometime in 2004, according to agovernment official.

“Both of the regulations are outfor comment and when theycome back we have to respond toall of them,” Marcia Newton, astaffer in the Centers forMedicare and Medicaid (CMS)told members of the Departmentof Health and Human Services(HHS) and Advisory Committeeon Transplantation (ACOT) inNovember. “The OPO regula-tions will probably be finishedfirst but it’s hard to predict.”

Newton observed that both regula-tions must be signed off on by theHealth Resources and ServicesAdministration (HRSA), theNational Institutes of Health(NIH), and the Food and DrugAdministration (FDA), beforegoing back for review by intragov-ernmental agencies and HHSSecretary Tommy Thompson.Once that cumbersome process iscomplete, the regulation is sent tothe Office of Management andBudget (OMB) who then has 90days to comment.

Transplant News DigestTransplant News Digest

Jim Warren

from the editors of Transplant News■ By Jim Warren, editor and publisher

Transplant News, edited and published by Jim Warren, is a twice-monthly newsletter for the transplant commu-nity focusing on developments in organ, tissue, eye and bone marrow procurement and transplantation. TransplantNews Digest is written exclusively for quarterly publication in Transplant Chronicles. For more information aboutTransplant News visit: http://www.trannews.com

Continued on next page

NEW For monthly updates from the Transplant News editors, read Chronicles Xtra at www.recipientvoices.org


The two regulations will be“Proposed Rules” containing infor-mation in a preamble about theeconomic impact of the rule, whowill be affected, what paper isneeded, and, most importantly arationale for what and why we(CMS) did, Newton explained.

Once a rule is published, the trans-plant community will have a 30 to60 day period in which to com-ment. “We want to know what youthink and new things that should beof interest to us,” Newton said.

Medicare to pay for LVAD inheart patients not eligible for a transplantMedicare patients who are suffer-ing from chronic end-stage heartfailure but are not candidates for aheart transplant will soon be eligi-ble to receive part of the cost of aleft ventricular assist device(LVAD).

The Department of Health andHuman Services (HHS) Centers forMedicare and Medicaid Services(CMS) announced on October 1 itintends to expand coverage forMedicare patients who have chron-ic end-stage heart failure, and meetinclusion criteria outlined in theRandomized Evaluation ofMechanical Assistance for theTreatment of Congestive HeartFailure trial (REMATCH). Theeffective date was not announced.

“This decision is based on the bestavailable scientific evidence fol-lowing a clinical trial that showedVADs can extend and improve thequality of life in patients with heartfailure,” said CMS AdministratorTom Scully.

In a “decision memo” CMA says ithas “determined that the evidenceis adequate to conclude thatimplantation of a LVAD approvedby the Food and Drug Administra-tion (FDA) for destination therapy

is reasonable and necessary as per-manent mechanical cardiac supportfor Medicare beneficiaries whohave chronic end-stage heart fail-ure, i.e., New York HeartAssociation Class IV end-stage leftventricular failure for at least 90days with a life expectancy of lessthan two years.

CMS noted it plans to developaccreditation standards for facilitiesthat implant LVADs and, whenimplemented, LVAD implantationwill be considered reasonable andnecessary only at accredited facili-ties.

Major advance in immunosup-pression on the horizonNew Pfizer pill reduces rejection inanimals with fewer side effectsA novel form of immunosuppres-sant—patterned after an aspect ofwhat is commonly called BubbleBoy Disease—is showing promisein preventing rejection of trans-planted organs in animals withoutcompromising the health of recipi-ents. The drug also has exhibitedpositive results in treating autoim-mune disease, according to a reportin the Oct. 31 Science.

If the experimental agent developedby Pfizer, called CP-690,550,works in humans, it could provide anew anti-rejection strategy for themore than 200,000 US transplantrecipients as well as a novel treat-ment for autoimmune diseases likelupus, rheumatoid arthritis, andeczema.

Taken by mouth, CP-690,550specifically blocks janus kinase 3(JAK3), an enzyme that regulatesthe activation and reproduction ofwhite blood cells—immune cellsthat attack transplanted organs or,in autoimmune disease, the body’sown healthy tissue. In initial exper-iments in mice given heart trans-plants and subsequent studies inmonkeys receiving kidney trans-

plants, CP-690,550 extended graftsurvival with fewer side effectscompared with traditional antirejec-tion drugs.

“It’s a brand new concept,” saidDominic Borie, MD, PHD, directorof transplantation immunology atStanford University and seniorauthor of the study. “We can saythat it does as well if not betterthan the other immunosuppressivedrugs we now have.”

Some side effects, such as kidneydamage, were seen with high dosesof the compound in early testing.“But we have found how to man-age them by reducing the dosage,”Borie noted. “At lower doses, allthe side effects disappear.”

“In spite of numerous treatmentoptions for organ transplant andautoimmune disease patients, thereremains a need for effective andsafe immunosuppressive agents,”said Paul Changelian, PhD, princi-pal research investigator at Pfizer.

Accumulating knowledge aboutsevere combined immunodeficien-cy (SCID) or “bubble boy disease,”a lethal condition in which childrenare born without a functioningimmune system, led to the develop-ment of the new compound. SCIDis caused by mutations in the generesponsible for producing the JAK3enzyme.

Pfizer scientists theorized it mightbe possible to harness some aspectsof SCID—specifically JAK3 activi-ty—to suppress but not completelyincapacitate the immune system.The researchers prepared a pureversion of JAK3 and began a longsearch for an inhibitor of thisenzyme. After screening nearly halfa million compounds, they identi-fied a promising molecule and thenchemically modified it to produceCP-690,550. This compound turnedout to be extremely potent in block-


ing JAK3 with little effect on otherimmune system enzymes.

“The difference between previousimmunosuppressive drugs and [CP-690,550] is that the previous oneswere discovered randomly—forinstance, they were antibiotics thatturned out to also block the prolif-eration of immune cells,” saidBorie. “This drug started from theknowledge of mutations thatexplain a human disease.”

CP-690,550 is being tested jointlyby Pfizer, Stanford, and theNational Institute of Arthritis andMusculoskeletal and Skin Diseases.The drug was well-tolerated inphase I safety studies in healthyhuman volunteers, and trials areunderway in patients with psoriasis,an autoimmune condition in whichskin cells grown more quickly thannormal. “Their lesions are veryaccessible, and they can be treatedfor a short period of time,”Changelian explained. Eventually,the compound will be tested in kid-ney transplant recipients.

“It took about four years…to getsomething promising enough to goto animals tests, and it will be fiveyears or so before [CP-690,550]might enter clinical practice,” saidChangelian. “But we’re excited byit, and we will stay the course.”

Year in ReviewThe year 2003 in transplantationwill be best remembered for twoissues that are joined at the hip—the increasing disparity betweenpeople on the waiting list for a life-saving organ and the number ofpeople willing to donate and theincreasing role money is going toplay in the donor process.

The year began with a recommen-dation from a small transplantethics meeting held in December inGermany that under certain circum-stances commerce in organ dona-tion is acceptable. It ended in

December with the uncovering ofan international organ traffickingscheme involving paid donors fromBrazil, transplants performed in atleast one South African hospital,and recipients including at least oneIsraeli.

In any other year the most signifi-cant event would have been thesurprise passage of national trans-plant legislation in the US Senate.Under the guidance of SenateMajority Leader (and transplantsurgeon) Bill Frist (R-TN), TheDonation and RecoveryImprovement Act (S. 573) passedthe Senate in November. The cen-terpiece of the legislation is $5 mil-lion in funding for reimbursingexpenses of living organ donors.

In March the Organ Procurementand Transplantation Network(OPTN) released data showing thatfor the third straight year the num-ber of organ donors, deceased andliving, increased by a minisculenumber (1.3%) over 2001. And,like 2001, living donors outnum-bered deceased donors.

The tiny increase underscored whathas been known for the past severalyears—public and professionaleducation programs designed toincrease donors simply do notwork. The lack of new donorsfueled interest in offering financialincentives to donor families to seeif it will increase donation. In June,a House subcommittee chaired byRep. James Greenwood (R-PA)held a hearing on the donor short-age which included testimony bygroups and individuals who werefor and against offering incentives.Greenwood had introduced legisla-tion last year that would authorize afinancial incentives trial.

In September the federal govern-ment released the results of a com-prehensive study—the “OrganDonation BreakthroughCollaborative: Best Practices Final

Report” which recommends thatothers emulate the success inincreasing organ donation of thenation’s most successful organ pro-curement organizations and trans-plant centers. The report led to thelaunch of a nationwide effort in 200of the largest hospitals in the US toincrease the conversion rate of eli-gible donors from the current 43%to 75% in the next year.

Here’s a look at the major newsdevelopments in transplantation in2003.

JANUARY

Bipartisan legislation introduced inthe House and Senate which couldease financial strains on transplantrecipients and living organ donorsalike. Under these bills organ trans-plant recipients would receive life-time Medicare coverage for their life-saving immunosuppressive drugs andhealth insurers would be prohibitedfrom raising premiums or imposingpreexisting condition exclusions onliving organ donors.

FEBRUARY

A Mexican teenager brought to theUS by her parents in search of a life-saving heart-lung transplant died onFebruary 22 because of a tragic mis-take that resulted in her receivingorgans with the wrong blood type.Despite heroic attempts to rectify themistake with a second transplant,17-year-Jesica Santillan died at theDuke University Medical School inDurham, NC.

MARCH

The number of Americans whoconsented to be organ and eyedonors in 2002 remained virtuallythe same as 2001, according topreliminary data compiled by the Organ Procurement and


MARCH (cont’d)

Transplantation Network(OPTN)/United Network forOrgan Sharing (UNOS). The num-ber of organ donors—deceasedand living—increased by only164 (1.3%) in 2002 over 2001.

Austrian man gets world’s firstdouble forearm-hand transplant.

APRIL

In a legal opinion that carries implica-

tions for those in need of a kidney, an

analyst ruled that it is legal and proper

to give waiting-list priority to a recipi-

ent whose loved one or relative has

donated a kidney anonymously to

someone else. Such an arrangement is

not in violation of the 1984 National

Organ Transplant Act’s (NOTA)

Section 301, which prohibits buying

and selling of human organs, accord-

ing to the legal analysis.

MAY

Deceased liver donor transplants have

increased 9% while patient deaths on the

waiting list for a liver have decreased 23%

since the inception of a new liver alloca-

tion policy in the US. The new policy—

known as MELD, for Model for End-

Stage Liver Disease and PELD, for

Pediatric End-Stage Liver Disease—

which was implemented in February of

2002, directs that for all but the most

severe and acute cases of liver failure,

patients’ priority for a transplant is

based primarily on a formula that cal-

culates their short-term risk of death

without transplantation.

JUNE

In Memoriam—The transplant community lost twopioneers in June. Belding Scribner, MD, the inventor ofthe shunt that allowed physicians to administer dialysiswithout having to tap into a new blood vessel for eachtreatment and Robert Good, MD, a pioneer in modernimmunology who is credited with performing theworld’s first successful human bone marrow transplant.

JULY

The OPTN/UNOS board of directorsmoved aggressively to begin address-ing areas of concern to transplant pro-fessionals and potential live donors.The board overwhelmingly adopted aseries of actions which will allow longterm assessment of live donors, requirecertification of live donor programs,and create a national registry to followlive donors for at least nine years.

AUGUST

The largest study of donor potential in theUS ever conducted finds if it ever hopes toprovide organs to all patients who needthem, the transplant community must lookbeyond getting organs from deceased donorsand focus on increasing live donation anddeveloping future technologies, such asxenotransplantation and tissue engineering. A 42-year-old man who had a malignanttumor on his tongue and jaw became theworld’s first tongue transplant recipient. The14-hour operation was performed July 22 atVienna’s General Hospital.

NOVEMBER

University of Illinois, Chicago, settles

lawsuit over allegations of liver trans-

plant waiting list improprieties.

“Whistleblower” Raymond Pollack,

MD, who brought the charges of

improper wait listing to authorities,

received $500,000 of the more than

$2 million settlement.

Wisconsin Assembly approves bill

that would give living donors up to

$10,000 tax deduction. Bill expected

to pass the Senate in January and

signed into law.

SEPTEMBER

The Health Resources and ServicesAdministration (HRSA), Office of SpecialPrograms, issues an alert to organizationsassociated with organ transplantation as areminder of the potential for transmissionof West Nile virus (WNV) through organtransplantation. In August 2002, four organtransplant recipients became infected with WNV after receiving organs from thesame donor. James Burdick, MD, is first physician everto be named director of the Division ofTransplantation.

DECEMBERUN General Assemblypostpones debate on totalhuman cloning ban for oneyear. Delay seen as set-back for US.

EU research ministers failto reach compromise onfunding stem cell research.

OCTOBER

Tissue banks are legally immune to liability claims ifone of their transplanted tissue products is tainted bydisease, a California appeals court ruled. Distributionof tissue transplantation is a “service,” not a sale ofgoods, thus tissue banks are not strictly responsiblefor product liability, according to the California Courtof Appeal for the Sixth Appellate District.


Many physical complications canresult from the long-term use of

corticosteroids. Patients who must takethese organ-saving drugs often faceuntoward side effects.

A partial list of the side effects of cor-ticosteroids includes hypertension(high blood pressure),osteoporosis (reducedbone mass), hyperlipi-demia (elevated concen-trations of lipids inblood), weight gain,“moon face,” and moodchanges. Fortunately, tolimit such side effects,you now have othertreatment options available.

Corticosteroids havebeen a big part of theanti-rejection “cocktail”since the beginning ofkidney transplantation. Early combina-tions included two drugs, the corticos-teroid prednisone and azathioprine.Even with this combination, rejectionrates were still high.

In the early part of the 1980s, aftercyclosporine was introduced, kidneytransplantation entered a new era.Rejection rates were reduced signifi-cantly, resulting in longer survival ofthe kidney.

But with every advance came a price interms of side effects. Some

of the most common sideeffects were hypertension,hyperlipidemia, and gingi-val hyperplasia (nonin-flammatory enlargementof the gums).

Then in the early 1990s,treatment options expand-ed to include tacrolimus, anew anti-rejection drugsimilar to cyclosporinebut with a slightly differ-ent side effect profile.More recently, other new

anti-rejection drugs havearrived on the market. These includemycophenolate mofetil, sirolimus and ageneric version of cyclosporine. Evenafter the addition of all these newagents, corticosteroids remained a cor-nerstone of the drug cocktail.

However, recent studies show that itis possible to avoid using corticos-teroids altogether, or to use them onlyfor short periods (seven days or less).Most of these studies involved whatis known as an “induction agent.”These powerful drugs are given at thetime of the transplantation surgeryand are continued for a short whileafterward.

Induction agents work by a couple ofdifferent mechanisms. The first is toinhibit the activation of cells that canharm the kidney, and the second is byelimination.

The list of side effects for theseagents, to name just a few, includesincreased risk of infection, tremors ordizziness. Cost is another issue,because induction agents are expen-sive, adding greatly to the cost oftransplantation.

This treatment approach is a brand-new area of interest with different programs using different medicationcombinations. Over time, more standardized regimens will becomeavailable. TC

ask the pharmacistask the pharmacistKidney Transplantation in the Era of ‘No Steroids’

■ By David J. Post, PharmD, BCPS

Curious About Laparoscopic Kidney Transplants?

Thanks to the technology of the Internet, anyone who wants to learn more aboutlaparoscopic transplant can watch a video of the procedure. On October 27,

2003, MeritCare Health System in Fargo, North Dakota, broadcast a live Web castof a hand-assisted laparoscopic donor nephrectomy.

Bhargav Mistry, MD, a transplant surgeon, and Timothy Monson, MD, a general andlaparoscopic surgeon, performed the kidney removal from a living donor. Both Dr.Mistry and Dr. Monson narrated during the surgery and were available to answerquestions from the public and from health care professionals around the world.

The surgery will continue to be available for the public to view anywhere in the world, at any time. To view this amazing life-saving procedure, go to www.or-live.com/meritcare/1145


patients before my dialysis. Theyoung lady who sat next to me duringdialysis was someone I knew yearsago. She was one of my first clientsthat hired me to do motivational pro-grams for her employees. We made agame out of beating people to the unitso that we could pray for healing forothers, peace in our unit and for our-selves.

What convinced me that I should con-sider a transplant was hearing a friendtell me that I could do somethingabout my situation. At that point, I gotbusy contacting the transplant depart-ment and asking questions. The great-est gift that I gave myself was work-

ing to make my lab numbers goodevery month. I wanted to be ashealthy as I could be. I sailed theship compliance into greater healthand a brand new life.

I was going to keep my ship in thewater and hold on through the storm.In the process I could hear andunderstand the invaluable informa-tion which was put before me.Whatever they told me to do, I did itwithout apprehension. I was nowdeveloping a new team. I was nowon the transplant waiting list.Several people offered me a kidney.It was as if God was smiling on medaily. Little did I know that my babybrother wanted to give me a kidney.He had researched and found out thatwe had the same blood type—O pos-itive. My brother called me and wept

as he told me what he wanted to do.I got excited.

All tests revealed that my babybrother was very healthy. He couldgive me one of his kidneys. The sur-gery was scheduled for June 19,2002. It was a success. I raised mybrother from infancy to the age of10. I never knew that I was takingcare of my kidney all along.

This has been an awesome journeyfor me. I am glad that I remainedcaptain of my ship and endured thestorms of life and overcoming chron-ic kidney failure.

Tamra LewisSuccessful Kidney TransplantRecipient, June 2002 TC

I Endured the Storm…Continued from page 1

Bruce Miller, right, smoked ciga-rettes for more than 30 years. He quit

before receiving a kidney transplant fromhis brother, Rex, in July, 2003.

SPOTLIGHT on DONATION

The National Kidney Foundation (NKF) is proud toannounce that on April 19-21, during National Organ

Donation Awareness Month, the Empire State Building willbe awash in green and white light to honor transplantation.

HOW DID THIS HAPPEN? Karen Kennedy, a Ph.D. candi-date at Fordham University in New York, approached theNKF with the idea in fall 2003. Karen had a passion fordonation ever since she donated a kidney to her mother,Verna, 10 years earlier. Karen currently conducts research on transplantation issues.

Though her mother is now deceased, Karen doesn't regrether decision to donate for a minute and is thankful for theextra time both she and her entire family, including Verna'stwo grandchildren, had with her. The NKF national office is

just one block from the Empire StateBuilding, and as Karen researched theexperiences that recipients and nonliv-ing donors have when attempting tocommunicate with each other, sheremembered a discussion she and hermother had about how wonderful itwould be to light up the Empire StateBuilding in honor of transplantation.With the NKF as the host organization,the idea went from conception to reali-ty. The green and white lights willhonor transplantation and the generosi-ty of living and nonliving donors andtheir family members. TC

Online Resources for Quitting Smoking

www.cdc.gov/tobacco/index.htm

www.cognitivequitting.com

www.quitsmoking.about.com

www.whyquit.com


keeping fitkeeping fitHow Exercise Can Help You Kick the Habit

■ By Chris L. Wells, PhD, PT, CCS, ATC

One of the common barriers tosmoking cessation is that it is

equated with weight gain. On averagethere is a 12 pound weight gain forboth women and men in the first yearafter quitting smoking, and an 8.5pound and 5.7 pound further weightgain in years one through five,respectively. Many people are willingto accept a small weight gain of 3 to 5pounds, but their efforts to stop smok-ing are undermined when weight gainexceeds this tolerated limit.

By making exercise a part of yourprogram to quit smoking, you canprevent or minimize weight gain. Ifyou are aware that you smoke whenbored, a well-rounded program wouldencourage you to substitute the nega-tive behavior with more positivechoices. Instead of eating fast foodswhen bored as a substitute for smok-ing, you could eat a healthy snacklike nuts and vegetables, take a walkor complete a task around the house.

There are many benefits to participat-ing in a regular exercise programbesides weight management. You canincrease muscle and bone strength,which will assist in prevention ormanagement of osteoporosis and the

adverse effects of prednisone use.Exercise decreases the risk of heartdisease and strengthens your immunesystem to fight off infections. Peoplewho purposefully participate in exer-cise report an increase in their mentalflexibility, concentration, memory andattention. Other significant benefits ofbeing active include an increase inconfidence, well-being, and self-con-trol. There is also a reported reductionof anxiety and depression. These self-image variables are many times thesame variables that are identified bysmokers as reasons that they smoke.Therefore, participating in exercisecan be a means to suppress smoking.The American Heart Association,Center for Disease Control and theAmerican College of Sports Medicinehave recently redefined the recom-mendations for exercise. It is recom-mended that everyone exercise atleast a half-hour a day at least fivedays a week. The 30 minutes can bedone all at once or completed in 10-minute increments throughout theday. The exercise can include suchactivities as walking, cycling and gar-dening or housework done at a mod-erate level of intensity. Participationin an exercise program has beenshown to reduce weight gain,

decrease the desire to smoke andlessen withdrawal symptoms inabstaining smokers. Finally, individu-als who exercise, while participatingin a smoking cessation program,report less tension, anxiety and stressthan individuals who stop smokingalone.

It is important that you select activi-ties that are enjoyable to you. It maybe helpful to exercise with a partnerto improve your compliance andobtain support of your family andfriends. It is important to select a timeof day that can be routinely used forexercise. This will help set up a healthhabit. The intensity does not have tobe strenuous. It is helpful to use theRate of Perceived Exertion Scale(RPE Scale – see Table 1) to judge anappropriate intensity level, particular-ly if you are a heart transplant recipi-ent or are taking high blood pressuremedications. It is recommended tobegin an exercise program at a paceor intensity between 2 and 3 for atleast six weeks. At that time, if youare not having any difficulty like per-sistent soreness with the exercise, youcan increase your effort to exercisebetween 3 and 5 on the RPE Scale.

0 1 2 3 4 5 6 7 8 9 10

Nothing Very Slight Moderate Somewhat Hard Very Very, Very Maximalat all Slight Hard Hard Hard

Table 1: Rate of Perceived ExertionThis is a scale that allows one to identify how hard an individual is working during exertion or exercise. Zero meansthat there is no stress during the activity, such as sitting in a chair doing nothing; Five means that the activity is per-ceived as hard to complete and 10 means no further work can be done; the maximal limit has been reached and the indi-vidual needs to stop immediately.

Continued on page15


Senate Organ Donation Bill Takes Next Step■ By Troy Zimmerman

Weeks of negotiations between key Senators and Representatives on legislation designedto expand organ donation have resulted in a consensus bill that should soon be on its

way to President Bush. The Senate’s last order of business on November 25, 2003, before

leaving for Thanksgiving was passageof S. 573, the “Organ Donation andRecovery Improvement Act,” spon-sored by Majority Leader Bill Frist(R-TN). The House of Representativesis expected to approve the bill inDecember or early 2004.

The National Kidney Foundation(NKF) worked closely with SenatorFrist, Senator Judd Gregg (R-NH),chairman of the Senate Health,Education, Labor and PensionsCommittee, and Senators Chris Dodd(D-CT) and Edward Kennedy (D-MA)to help craft a substitute to the originalversion of S. 573. One of the bill’skey provisions is the establishment ofa grant program to assist living donorswith non-medical expenses related todonation, such as travel and subsis-tence. This has been an NKF publicpolicy priority, as we believe it will

improve transplant opportunities forindividuals of lower socioeconomicmeans who are often precluded fromconsidering living donation.

Equally important, the legislation doesnot include a provision contained inthe earlier Senate bill that would haveamended the National OrganTransplant Act (NOTA) to authorizedemonstration projects to determine iffinancial incentives would increasenon-living organ donation (NOTA pro-hibits “valuable consideration”).While many transplant societies andorganizations supported demonstrationauthority, the NKF remained steadfast-ly opposed, with its belief that pay-ment for organs undermines our val-ues as a society. However, the legisla-tion examines the issue by directingthe Secretary of HHS to submit toCongress, by December 31, 2004, a

report that evaluates the ethical impli-cations of proposals to increase non-living donation.

S. 573 authorizes funds for organdonation awareness activities for thepublic and health professionals;authorizes grants to organ procure-ment organizations and hospitals toestablish programs designed toincrease donation; directs theSecretary of Health and HumanServices to conduct studies on organdonation, recovery, preservation andtransportation of organs; and authoriz-es the Secretary to establish mecha-nisms to evaluate the long-term out-come for living organ donors.

About the AuthorTroy Zimmerman is the NKF Directorof Government Relations inWashington, DC.

TC

How Do the Changes in Medicare Affect Recipients?

The new Medicare drug bill, signed into law byPresident George W. Bush in December, does not imme-

diately change the current Medicare Part B coverage ofimmunosuppressive medications. Transplant recipients who

have current Part B immunosuppressant coverage (ESRD benefici-aries with 36 months coverage, or aged or disabled who have life-time coverage) will continue to have Medicare pay 80 percent ofimmunosuppressant costs. However, not later than January 1, 2005,the Secretary of Health and Human Services is required to report toCongress on recommendations regarding methods for providingunder the new Part D outpatient drugs currently provided underMedicare Part B.

On the other hand, aged or disabled transplant recipients who donot qualify for the Part B immunosuppressant coverage (e.g., theywere not Medicare-eligible at the time of transplant), will be able toreceive immunosuppressants through the new Part D drug benefit.

The law will not take full effect until 2006, and in the spring issueTransplant Chronicles will provide further analysis of how the newrules affect recipients. TC

Getting in Shape for the U.S.Transplant Games

Whether you are a first class athlete like ChrisKlug or just beginning to exercise for the firsttime, you will be welcome at the U.S. TransplantGames, and there will be events for you. Thisyear's Games will be July 27-August 1 inMinneapolis - St. Paul, MN. Find out about get-ting in shape in our next issue! TC

In the Spring issue of Transplant Chronicles…


There are several strategies that can beused to increase your activity level andassist with weight management. Short10-minute exercise bouts can be sched-uled when your cravings to smokepeak. For example, if you have a ten-dency to smoke after meals, it may behelpful to schedule an activity such aswalking or cleaning up after eating. Fillthe work time breaks with health snackeating and a stretching or yoga routinethat can be completed in your officechair. See Table 2 for other suggestionsto increase activity levels throughoutthe day.

How Exercise Can Help…Continued from page 13

A smoking cessation program will bemore successful if you examine yourbeliefs and habits about smoking, eat-ing and exercise. Some degree ofweight gain should be expected whenyou make such a difficult lifestylechange by quitting smoking, but it may

be prevented or minimized by smallchanges to one’s diet and activity lev-els. Smoking cessation is not an easytask but is a large step toward leadinga more healthy and rewardinglifestyle. TC

Table 2: Suggestions to increase activity level throughout the day.

• Choose the stairs instead of the elevator. • Park the car further away from the store.• Carry the grocery bags to the car instead of using a cart.• Take a walk or complete some activities like yoga during work time

breaks.• Walk to a park or restaurant to eat lunch.• Walk to the post office or mailbox to mail a letter.• Complete some household activity during TV commercial breaks. • Use manual tools to complete yard work.

The more fluids you drink, the moreyou urinate—if your kidneys arehealthy. Failed kidneys can’t handleall of that water, which is why fluidintake routinely is restricted for dialy-sis patients. Dialysis, commonly fourhours daily three times weekly,removes dissolved wastes and most ofthe excess water.

But back to the male ego…Males uri-nate in public restrooms. Often, thereis no partition between one urinal andthe next. It felt like everyone couldsee there was something not rightwith me.

I developed strategies for coping.

The first was abstinence. I religiouslyfollowed my dialysis center’s fluidintake rules. Not only did that strate-gy earn me much-needed psychologi-cal pats on the back from my dialysis

nurses and techs, it also reduced myneed to go to the men’s room.

My second strategy involved scopingthe restroom landscape—and choos-ing those with fewer occupants.

My third strategy was to get a kidneytransplant. In this endeavor, I waslucky for the second time in my life.

My wife, Mary Anne, gave me a kid-ney in 1991. It was a good match. Butthe life of that transplant was cutshort by a common virus, unleashedby an aggressive immunosuppressivedrug therapy.

I thought I was without any hope, buta dear friend and long-time colleagueat the Washington Post, MarthaMcNeil Hamilton, gave me anotherkidney on November 20, 2001. Wechronicled the episode and the variouslife stories around it in our book,Black & White & Red All Over: TheStory of a Friendship.

Now, friends who are happy to see mealive, and acquaintances who seemsurprised that I am not dead, all askthe same questions: “How are you?How is your health?”

I answer them in the moment, havinglearned not to take the next second orday for granted. “Now, I’m on top ofthe world.” They understand I havedefied death, but, little do they know,the small comforts awarded me frommy transplant: being able to go.

Warren Brown is a member of the2004 transAction Council ExecutiveCommittee.

TC

Embarrassing Moments■ By Warren Brown

W hen ill, even a tough man can feel small or embar-rassed. Dialysis patients cannot urinate and, while

waiting for my second transplant, urinating was far morethan just a matter of removing toxic wastes: it was a constantreminder that I was sick, and in public bathrooms, I wasembarrassed.

Warren Brown received a kidneyfrom Martha McNeil Hamilton, hiscoworker at the Washington Post.

Photo by Brad Wilson

30 East 33rd StreetNew York, NY 10016

(800) 622-9010 www.transplantrecipients.org

☞ Has your e-mail address changed or have you recently received e-mail? E-mail [email protected] with your e-mail address and your membershipnumber located above your name on the label.

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During hypnosis your body andconscious mind are relaxed

while your subconscious mind staysalert and receptive to suggestions.When given a suggestion that issomething you truly want and iswithin the bounds of your belief sys-tem and moral orientation, you canaccept it as a new reality. For exam-ple: You can envision and acceptyourself as a nonsmoker. Hypnosisis a natural, functional and noninva-sive way to begin good, lifelongattitudes and habits.

Can I be hypnotized?People of average intelligence with-out any organic brain damage can behypnotized if they want to be. Noone can be forced into hypnosis. Thedepth of hypnosis varies from per-son to person and is even differentfor an individual each time they arehypnotized. Generally it is easier toreach a deeper state of hypnosisquicker with each hypnosis session.

Is hypnosis safe?In 1958 The American and BritishMedical Associations and AmericanPsychiatry Association approvedhypnosis as a viable, safe, therapeu-

tic tool. The American DentalAssociation includes hypnosis in its"Guidelines For TeachingComprehensive Control of Anxietyand Pain in Dentistry." Hypno-therapy is a consent agreement youhave with your hypnotherapist. Youcannot get stuck in hypnosis!

Are the results of hypnosis perma-nent?New habits stay with some peopleindefinitely while others need peri-odic reinforcement. The effects ofhypnosis are cumulative—the morethe recorded sessions are listened toand the techniques practiced andposthypnotic suggestions broughtinto play, the more permanent theresults become. Self-hypnosis train-ing and practice are helpful.

How do I find a good, reputablehypnotherapist?You can contact one of the nationalprofessional hypnotherapist organiza-tions to check on a specific therapistor to ask for a list of members in yourarea. These organizations have a codeof standards, professional guidelinesand require at least 30 hours of con-tinuing education yearly to maintain

membership. Two organizations withhigh standards are the InternationalMedical and Dental HypnotherapyAssociation (www.infinityinst.com)and the National Guild of hypnotists(ngh.net). Interview your prospectivetherapist and ask for references.

How will hypnosis help me becomeand remain a nonsmoker?Your hypnotherapist will determinewhy you started smoking and whyyou have continued. What are yourparticular blocks to becoming a non-smoker? What has not worked andwhat has worked for in the past?Then he or she will use hypnosis tochange your attitudes and physicalreactions to smoking. Once youhave achieved success and stoppedsmoking, you may need follow-upfor reinforcement. Your old habit didnot develop overnight, and it willusually take time to cease perma-nently. You may be given personal-ized recordings and post-hypnoticsuggestions to use daily. You may betaught self-hypnosis as well.

Sue Hull is a clinical hypnotherapistin private practice in Omaha,Nebraksa. She received her BS inDental Hygiene in 1978.

TC

Does Hypnosis Help?■ By Sue Weinert Hull, RDH, BS, CHt

in this issue of transplant chronicles . . . (for web) · in this issue of transplant chronicles ....

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