pages 4-5 page 7 pages 10 and 15 bone disease: a ... a common language on which to base diagnosis...

in this issueKnow Your Lab Values

pages 4-5

Eat Right for Your Heartpage 7

Guidelines for TransplantRecipients

pages 10 and 15

Taking Care of Your Bones page 12

UNDERSTANDING BONE DISEASE AND LIPIDS

Clinical Practice Guidelines for Kidney DiseaseBy John Davis, National Kidney Foundation Chief Executive Officer

VOLUME 12 NUMBER 3 SUMMER 2003

This publication is a part of the K/DOQI Learning System (KLS)™ and is made possible

through an educational grant from , founding and principal sponsor of NKF-K/DOQI.

BONE DISEASE: A SimpleExplanation page 8

The National KidneyFoundation’s (NKF) DialysisOutcomes Quality Initiative(DOQI), founded in March1995, was originally createdto help improve the care ofpeople who receive dialysis.In 2000, the NKF renamedDOQI “K/DOQI,” (KidneyDisease Outcomes QualityInitiative), to cover the mil-lions of people with kidneydisease. DOQI and K/DOQIhave resulted in seven clini-cal practice guidelines thathave changed the wayhealth care professionalsdiagnose and treat peoplewho have kidney disease.Additional guidelinesare under-way.

HOW ARE K/DOQIGUIDELINES DEVELOPED?

All K/DOQI guidelines aredeveloped by work groups,made up of medical profes-sionals, who put the guide-lines together. First, thework group researches all of

the related scientific studiesand articles. They read thesearticles to make sure thatthe guidelines are based onevidence whenever possible.Before the guidelines arecompleted, other experts andorganizations read them andmake suggestions. After thework group reviews these

suggestions, they mightrewrite parts of the guide-lines to make them clearer,and then, finally, the guide-lines are published in theAmerican Journal of KidneyDiseases.

ORIGINAL DOQI GUIDELINES

In 1995 the NKF formed fourwork groups to research andstudy all available, relevant,scientific literature and useit to develop evidence-basedclinical practice guidelinesfor adequacy of dialysis, vas-cular access and treatmentof anemia. These workgroups reviewed the descrip-tions of more than 11,000articles. Next, the workgroups read more than3,000 of these 11,000 arti-cles to make sure they werethe most important ones fortheir guideline topics. Abouthalf of these articles met therequirements, and the workgroups critically analyzedthe articles to develop theguidelines. Finally, in the fall of 1997, the NKFpublished its first fourDOQI guidelines: theNKF-DOQI ClinicalPractice Guidelines forHemodialysis Adequacy,Peritoneal DialysisAdequacy, Vascular Accessand Treatment of Anemiaof Chronic Renal Failure.

Because nutrition is animportant issue inadvanced kidney disease,the NKF put together

another work group whichdeveloped a fifth set ofguidelines published in June2000: the NKF-DOQI ClinicalPractice Guidelines forNutrition in Chronic RenalFailure.

AN ONGOING PROCESS

Since there are always newstudies and breakthroughsin medicine, the NKFupdates its guidelines every few years. In 1999, thefirst four Work Groups gotback together to study thenewest information on dialy-sis practice. The updatedguidelines were then pub-lished in 2000.

All K/DOQI guidelines willbe updated as new researchis published.

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11

continued on page 3

The K/DOQIguidelines contin-

ue to set standardsof care for people with

kidney disease.

Over 600,000 people will be on dialysis by the end of this decade—doublethe current figures—according to Healthy People 2010, the federal govern-

ment’s public health plan for this decade.

Family Focus Volume 12, Number 3

2

NKF Family Focus is published quarterly by the National Kidney Foundation

Editorial Office:National Kidney Foundation30 E. 33rd Street, New York, NY 10016(800) 622-9010 • (212) 889-2210www.kidney.org

Editor-in-Chief:Karren King, MSW,ACSW, LCSWKansas City, MO

Fitness Editor:Pedro Recalde, MS, ACSMSan Francisco, CA

Medical Editor:Wendy W. Brown, MD St. Louis, MO

Nursing Editor:Bobbie Knotek, RN, BSN Plano, TX

Nutrition Editor:Lori Fedje, RD, LD Portland, OR

Patient Editor:Dale EsterGlendale, AZ

Pediatric Editor: Barbara Fivush, MDBaltimore, MD

Social Work Editor:Mary Beth Callahan,ACSW/LMSW-ACPDallas, TX

Transplant Editor:Linda Harte, RN,BSN, MA, CNN, CCTKansas City, MO

Opinions expressed in this newspaper do not necessarily represent the position of the National Kidney Foundation

Editorial Director: Gigi Politoski

Editorial Manager: Sheila Weiner, LSW, CSW

Executive Editor: Sara Kosowsky

Managing Editor: William Comerford

Production Manager: Sunil Vyas

Design Director: Oumaya Abi Saab

Editorial Assistant: Helen Packard

fromtheeditor

As you can tell from the title of

this issue ofFamily Focus, the themewill be bone disease andlipids. I must admit thatalthough I have worked inthe field of dialysis and kid-ney transplantation since1979, this is an area aboutwhich I had little knowl-edge. As a result, I learneda great deal from readingthe articles in this issue,and I hope you will, too.

BONE DISEASE ANDLIPIDS are two areas thatseem as if they can beignored, at least initially,with no obvious ill effects.Do you ever think, “Whatif I don’t take my phos-phate binders as pre-scribed? I’ve skipped thembefore and didn’t see anydifference.” Or perhapsyou have thought, “I loveto eat all of those fattyfoods that the dietitiantells me to avoid, and I

haven’t had any problemsas a result.” Well...thosethings may be true fornow. However, it is impor-tant to remember that youcan have a long, healthylife with chronic kidneydisease. So, what aboutyour future? The thingsyou do (or do not do) rightnow will have a definiteeffect, either positive ornegative, on your healthand subsequent quality oflife. That does not meanthat following medicaladvice is always easy.That is one reason thedialysis and transplantteams of health care pro-fessionals are there toassist you. But, if yousucceed in making thesehealth care recommenda-tions a part of your life, Ibelieve that you will feelthe benefits were wellworth it!

I am very excitedabout our next issue,

which happens to be thelast issue of the year. Itwill focus on communica-tion in the dialysis unitbetween those who are ondialysis and the dialysisstaff. Your relationshipwith these health careproviders is so very impor-tant and communicationplays a major role in thetype of relationship youhave. Many have receivedand returned the commu-nication survey we sent torandomly selected FamilyFocus readers. We appreci-ate your response andlook forward to readingwhat you had to tell us.We will share the respons-es in that issue so that allof us in the dialysis com-munity can learn what weneed to do to enhancethose communications.Thank you for being ourteachers!

For the Editorial Board,Karren King

FF

To find out about the

National Kidney Foundation,

visit our Web site at

www.kidney.orgor call

(800) 622-9010Make a donation,

learn about our

resources or find

out more about

kidney disease.

“I learned

a great deal

from reading

the articles

in this issue,

and I hope

you will, too.

Karren King

”

3


Clinical Practice Guidelines…continued from page 1

CHRONIC KIDNEY DISEASE

In 2002, the NKF publishedits Clinical PracticeGuidelines on ChronicKidney Disease (CKD). Thiswas a tremendous mile-stone, as these guidelinesprovided evidence that 20million Americans have CKDand 20 million more are atincreased risk, which hadnot been previously known.The CKD Guidelines formeda framework so that allfuture guidelines wouldrefer to the five stages ofkidney disease, from milddamage to kidney failure.These stages give healthcare professionals, payorsand individuals with kidneydisease a common languageon which to base diagnosisand treatment discussions.

MANAGING DYSLIPIDEMIASIN CHRONIC KIDNEY

DISEASE

These guidelines were pub-lished in April 2003. Manypeople with CKD also havecardiovascular disease.These guidelines urge physi-cians to test individualswith CKD for elevated cho-lesterol levels and for

changes inthe balanceof “good”and “bad”cholesterol to help pre-vent cardio-vasculardisease.

BONE METABOLISM AND DISEASE IN


People with kidney diseaseoften develop mineral imbal-ances and bone disease.The next set of K/DOQIguidelines will focus on thisissue to help doctors treatpeople with bone diseaseand CKD. These guidelineswill be published in Fall 2003.

BLOOD PRESSUREMANAGEMENT IN


These guidelines will focus onmanaging blood pressure inpeople with CKD. They willrecommend the best drugs fortreating high blood pressure inindividuals with kidney dis-ease, blood pressure goals andhow to prevent heart disease.They are in the review stage

and will be published by theend of this year.

CARDIOVASCULAR DISEASEIN DIALYSIS PATIENTS

These guidelines will focus onrisk factors for cardiovascular disease and how to manage them in people who are ondialysis. They will be pub-lished in early 2004.For additional informationabout K/DOQI ClinicalPractice Guidelines and relat-ed materials, please visitwww.kdoqi.org

About the AuthorJohn Davis is the CEO of the National KidneyFoundation, Inc.

deareditor

Ihave a disease called "amyloidosis" with kidney involvement.It has been such a struggle to explain and understand such arare disease. Amyloidosis is a blood problem that causes pro-

teins to accumulate throughout the body. These proteins have dam-aged my kidneys, causing chronic kidney disease. At the time ofdiagnosis I was given a prognosis of 18 months survival. As a 40-year-old active mother with two young boys and a husband, thisprognosis was not an option for me. I went through many years oftests, and a year ago I was hospitalized and given high-dosechemotherapy and a stem-cell transplant. I've been bald from thechemotherapy for about a year.

During my hospital stay, I would write an inspirational thoughtthat I would focus on each day. It truly helped me heal, reading itover and over in my hospital bed each day. I even collected mythoughts into a book, called Messages of Hope, to share with staff,family and friends.

During my hospital stay, my husband stayed by my side andmade sure my kids were well cared for. He is a brilliant and humblinginspiration to my kids and me. He works hard at his job and bringswork home every day. He keeps everybody's lives in perspective. Fora month or so, I had a visiting nurse in my home to help me heal,but my best nurses were my husband and children. Their fun, happyspirit helped me heal and now I am in remission.

A brief description of this disease can be found on the Internetat www.amyloidosis.org. Information is still limited because it is arare disease. There is no cure and no research funding for amyloido-sis. My goal is to work towards raising awareness. I will continue thejourney to fight this rare disease.

EARLY DETECTION OF THIS DISEASE COULD SAVE MANYLIVES!

Sincerely,Joy HerouxGaithersburg, MD

Dear Editor:

Family Focus is very informative. I enjoy reading the information,and it is very helpful. I had a transplant on February 1st after almost fouryears on dialysis. I have to watch my blood sugar, but I am taking a pillwhich so far is controlling it, along with my diet. All in all, things areprogressing. I appreciate the updates in your newspaper and found theissue on diabetes very helpful. Please continue your great coverage onkidney disease information.

Thank you,

C. LongXenia, Ohio

FF

John Davis

The NKF is producing publica-tions for professionals (above)as well as for patients.


4

When peoplehave chronickidney disease

(CKD), their kidneys oftenhave problems controllingthe levels of the mineralscalcium and phosphorus inthe body. This may lead tobone disease. Often, peopleexperience no symptomsfrom bone disease in theearly stages, but if it is nottreated, the bones can causepain and break easily. Theabnormal levels of calciumand phosphorous can evencause heart problems.Therefore, it is important toknow how to identify bonedisease in its early stages.This article describes themost common bone diseasesfor people with CKD, andhow doctors identify theseproblems.

Bone disease can bedescribed as a range ofproblems with the skeleton,from very high “turnover” ofbone to the opposite extremein which bone turnover isvery low. Turnover refers tothe activity of the bone.Many people think of bonesas simple, hard objects, likewood or metal. In fact, bones are living and

constantly changing.The old material inbones is broken down,and new material isbuilt up. Bones thatare too active are saidto have a high turnoverproblem. Bones thatare not active enoughhave a low turnoverproblem.

It is also possiblefor people with kidneyfailure to have normalbones, particularly ifthey follow their dietand other recommendationsof their kidney doctor.

To make a definite diag-nosis it is necessary toremove a small piece of boneand make careful measure-ments of what is present inthe bone under a micro-scope. In most people, how-ever, it is possible to make adiagnosis by looking atblood tests.

When minerals in theblood (calcium and phos-phorous) are not balancedproperly, the parathyroidglands may release parathy-roid hormone (PTH). Whenpeople with CKD have highlevels of PTH in the blood(greater than 500 pg/mL),

it is because of a conditioncalled secondary hyper-parathyroidism, often seenwith OF or MUO (describedin the box below). PTHdraws calcium out of thebones, causing them tobecome weaken. In peoplewith very severe CKD, veryhigh serum phosphorouslevels (hyperphosphatemia)are often seen with hyper-parathyroidism.

On the other hand, verylow levels of PTH (less than100 pg/mL) are often seenwith AD or osteomalacia.Osteomalacia is seen mostoften with aluminum in thebone, and a test of alu-minum levels in the bloodmay be helpful in makingthis diagnosis.

When PTH levels arenormal (between 100 pg/mLand 500 pg/mL), other testsof bone cell activity may behelpful. For example, ablood test that shows highlevels of serum alkalinephosphatase may indicateOF or MUO.

Hypercalcemia (high lev-els of serum calcium) mayoccur with both high andlow levels of PTH. High calci-um levels with a PTH less

than 100 pg/mL may be a sign of AD. The bones maynot be absorbing the extra calcium in the blood, which could cause a heart or blood vessel problem. High serumcalcium levels combinedwith high PTH levels (over500 pg/mL) may be a sign of tertiary hyperparathy-roidism. High calcium levelsusually “turn off” theparathyroid gland so it stopsreleasing PTH. With tertiaryhyperparathyroidism, thisno longer happens. Surgerymay be needed to removethe parathyroid gland.

Whether you have kid-ney disease, are undergoingdialysis or have a kidneytransplant, it is very impor-tant that you know whatyour numbers are for calci-um, phosphorous and PTHlevels. Learn what you andyour health care team cando to keep them in the prop-er range so that you canavoid the different types ofkidney bone disease.

About the AuthorKevin Martin, MB, BCh,FACP is professor of InternalMedicine and director of theDivision of Nephrology at St.Louis University.

Diagnosing the Different Types of Bone DiseaseBy Kevin Martin, MB, BCh, FACP

a) Osteitis fibrosa (OF), which is a high turnover bone disease that occurs when parathyroid hormone (PTH)is very high (hyperparathyroidism).

c) Adynamic Bone Disease (AD), which has very low boneturnover and little cellular activity;

The types of bone disease can be grouped into four categories:

b) Mixed Uremic Osteodystrophy (MUO), which lookssomething like OF, but also has a mineralization defect (i.e., the bones are soft because they do not contain enough calcium).

d) Osteomalacia, which is a severe mineralization defectusually due to aluminum buildup in bone.

FF

CKDSTAGE 3

CKDSTAGE 4

CKDSTAGE 5

PHOSPHOROUS (MG/DL)

2.7-4.6 2.7-4.6 3.5-5.5

CALCIUM (MG/DL)

“NORMAL” “NORMAL”8.4-9.5;

HYPERCALCEMIA =>10.2

INTACT PTH (PG/ML)

35-70 70-110 150-300

The recommended blood levels for different minerals. “CKD Stage 5” is kidneyfailure. Stages 3 and 4 include people who have reduced kidney function, but donot require dialysis or a transplant.

5


In April 2003, theNational KidneyFoundation

(NKF) published theKidney Disease Out-comes Quality Initiative(K/DOQI) ClinicalPractice Guidelines onManaging Dyslipid-emias in ChronicKidney Disease (CKD).

Q. WHY WERE THE GUIDE-LINES WRITTEN?

People with kidneydisease have increasedrisk for cardiovasculardisease (CVD) (heartdisease) and athero-sclerosis (hardening ofthe arteries) and tendto die earlier than theyshould from heartattacks and strokes.One of the major riskfactors for heart dis-ease is abnormal bloodlipid (fat) levels. Thenew guidelines giveadvice to doctors abouthow to treat peoplewith kidney diseasewho have high choles-terol and other abnor-mal fat levels.

Q. WHAT LIPID LEVELS DO THE GUIDELINES RECOMMEND?

Abnormal blood fatlevels are very common

in patients with CKD.There are several dif-ferent kinds of fats inthe blood in addition tocholesterol (Table 1).High levels of choles-terol, LDL and triglyc-erides are consideredbad while high levels ofHDL are good.

Q. FOR WHOM WERETHESE GUIDELINES WRITTEN?

The guidelines arefor all people withCKD, on dialysis andwith a kidney trans-plant, including chil-dren with kidney dis-ease. All these individ-uals have a highchance of havingabnormal blood lipidlevels and a high riskof CVD.

Q. WHAT DO THE GUIDE-LINES SAY ABOUT ABNOR-MAL LIPIDS IN PEOPLEWITH CKD OR A KIDNEYTRANSPLANT?• People with CKD

should be consideredto be in the highestrisk category.

• Lipid levels shouldbe measured when aperson is found tohave CKD, after anychanges in treat-

ment, if the person’smedical conditionchanges and at leastonce a year.

• People with abnor-mal lipids need tomake "therapeuticlifestyle changes"(TLC), that includemaintaining a nor-mal body weight,blood pressure, andblood sugar, regularexercise, eating ahealthy diet, no ciga-rette smoking anddrinking alcohol onlyoccasionally.

• Medicine should beused for LDL levelsof 100 to 129 mg/dLafter three months ofTLC with no dec-rease in the levels.The first drug thera-py for high LDLshould be with atype of medicinecalled a statin.

• Medicines calledfibrates may be usedfor people on dialysiswith triglyceridesgreater than or equalto 500 mg/dL. Thesemedicines shouldalso be used for indi-viduals on dialysiswith triglyceridesgreater than or equalto 200 mg/dL who

also have non-HDLcholesterol greaterthan or equal to 130mg/dL, who cannottake statins.

Q. SHOULD PEOPLE WITH CKD READ THEGUIDELINES?

These guidelinesare for doctors, nurses,pharmacists, dietitiansand others who carefor people with CKD.The information inthese guidelines canand should be given toindividuals who haveCKD and their familiesand the NKF will

provide materials thatwill aid in educatingthem about this impor-tant topic. It is espe-cially important toknow where your labvalues are and wherethey should be. Askyour health care teamabout your lipid levelsand see where they fitinto the chart below. If your levels areabnormal, talk withyour team about howto improve your numbers.

Managing Serum Lipids in Chronic Kidney Disease:Answering Questions About the New GuidelinesAn interview with Dr. Bertram Kasiske, MD, Work Group Chair and Editor in Chief of American Journal of Kidney Diseases

FATS IN THE BLOOD

TYPE OF FATTotal cholesterolDesirableBorderline highHighLow-density lipoprotein

(LDL) cholesterolBestBetterBorderlineHighVery highTriglyceridesNormalBorderline highHighVery high

High-density lipoprotein(HDL) cholesterol

Low

LEVEL (MG/DL)

<200

200-239

≥240

<100

100-129

130-159

160-189

≥190

<150

150-199

200-499

≥500

<40

Knowing Your Numbersfor MineralsBy Sharon Moe, MD, FACP

People with chronic kid-ney disease (CKD) have avariety of bone and mineral(calcium, phosphorous,parathyroid hormone [PTH])abnormalities. Mineral disor-ders not only affect yourbones, but they can alsoimpact the rest of your body,including your heart. If yourbones cannot properly storecalcium and phosphorusthen it may go to parts ofyour body where it does notbelong such as in blood ves-sels (leading to “hardening” ofthe arteries), skin (leading to

itching) and joints (leading topain). We have learned a lotin the last few years, but inthe past there has been nostandard way of treatingbone and mineral disordersin individuals who have kid-ney disease.

The National KidneyFoundation has been a leaderin establishing new stan-dards and goals for doctorswho take care of people withchronic kidney disease(CKD), The Bone and MineralMetabolism and Disease inCKD guidelines include targetgoals for phosphorous, calci-um and PTH. These targetlab values are listed in a

chart at the top of page 4.Study the chart to see whatyour lab values should be,and ask about your levels atyour next treatment or doc-tor’s appointment.

The K/DOQI Guidelinestell doctors to pay moreattention to helping you con-trol your blood fats, decreasehigh phosphorous levels,have more normal levels ofserum calcium and limit theamount of calcium youreceive through diet, dialysisor medicines. Fortunately,new therapies may make itpossible for these things tohappen. However, it can onlybe done if you learn more

about the levels of calcium,phosphorus, and parathyroidhormone (PTH) in your blood,and how you may need toadjust your diet, medications,and other things you can do to keep your boneshealthy and become a part-ner in your care with yourkidney doctor, nurse, dieti-tian, social worker and otherkidney professionals.

About the AuthorSharon Moe, MD, FACP, isAssociate Professor ofMedicine and Associate Deanfor Research Support atIndiana University School ofMedicine and RoudebushVAMC in Indianapolis, Ind.

FF

FF


6

As you know from otherarticles in this issue, keep-ing bones healthy requires abalance of the minerals cal-cium and phosphorus.When your kidneys are notworking properly, an imbal-ance between these twominerals develops. One ofthe results of this imbalanceis loss of bone mass and agreater chance of fracturing(breaking) bones.

There are no specialexercise training guidelinesto help combat bone dis-ease, but physical therapistsbelieve that a well-balancedexercise program focusingon both aerobic andstrength training should beconsidered. Strength train-ing (like lifting weights) canhelp keep bone mass whilestrengthening the musclesaround your bones for extraprotection and balance.Building strength in onearea of the body does not

help otherareas, so it isimportant todevelop aweight liftingprogram thatinvolves allof your limbsand majormuscles.

Before you begin exercis-ing, you should consult yourphysician and, if possible, atrained exercise physiologistto discuss your program andlimitations to your program.Some exercises need to bemodified to avoid increasingthe amount of pain you may

already have due to bonedisease. If you are experi-encing pain, they may sug-gest you avoid weight train-ing and try other activitieslike chair exercises, wateraerobics, swimming or walk-ing in the water. There aremany options for those whofind it painful to even carrytheir own weight.

One of the major con-cerns of those with bonedisease is guarding against“slip and fall” situations.There are some things thatyou can be aware of to helpprotect you from theseinjuries. Women should con-sider wearing flat shoes ver-sus high-heeled shoes. Flatshoes give a greater feel forthe ground and lower yourchance of turning an ankleon uneven sidewalks. Also,the fear of falling by itselfmay be contributing to yourrisk of falling. People tend totake smaller and quickersteps as they age.Unfortunately, this maytrain the feet to have a limit-ed range, making themunable to take wide steps, regain balance and avoid a fall.

There are some exercisesyou can do at home to helpyou regain your sense ofbalance and increase yourreaction time, which can aidyou in avoiding painfulinjuries. Find a comfortableplace in your house, butnear your bed, couch or atable that can be used forbalance. Stand with yourfeet together, then step for-ward with one leg and main-tain your stance for 10 sec-onds. Take the time to feelyour center of gravity, andthen step back to your “feettogether” position. Afterstepping for-ward 10 times,try stepping toyour side justbeyond shoul-der width, feelyour center ofgravity, thenback to the“feet together”position. Afterthis exercisetry steppingbackwards,maintainingbalance, thenreturning tobeginningposition. Trythese exerciseswith your rightleg first andthen your leftleg. You neverknow which leg you mightneed to stopyou fromfalling. Doingthese exercisesmay help

make you stronger, butmore importantly, you willbecome more aware of yourbody and reaction time.There is a world of unevensidewalks, cracked walk-ways, sudden steps andslippery floors out there,and we should prepare our-selves the best we can.

As always, be careful andhave fun exercising.

Take the Time to Prepare YourselfBy Pedro Recalde, MS, ACSM

FF

Bone disease and lipid abnormalities are two of the challenges that

people with kidney failure must face. Although regular exercise

should be part of your plan to manage both bone and lipid

problems, this article will focus on your bones.

There are lots of reasons to donate a car to the

National Kidney Foundation. A possible tax deduction* is only one.

Make Your Car a Kidney Car. Cars That Save Lives.

Call 1-800-488-CARSwww.kidneycars.org

JUMPSTART

H O P E .

*Consult your tax advisor for details

7


If you listen to thenews on television,read the local paper

or scan the latest maga-zines, you will often findinformation on foods thatmay make you feel betterand help you live longer.Many foods that you buy inthe supermarket are nowlabeled “heart healthy.”People with kidney diseasehave an even higher risk ofdeveloping heart disease,because problems such ashigh blood pressure anddiabetes affect both the kid-neys and the heart. Thisrisk starts before you needdialysis and continues to behigh after transplantation.The National Kidney

Foundation K/DOQI WorkGroup on Lipids recentlyreleased guidelines on howto manage lipids (fats inyour blood that may con-tribute to heart disease) inthose with kidney disease.

The good news is thatthere are some logical foodchoices you can make thatmay be helpful in protectingyour heart. The really goodnews is that these betterfood choices are also healthyfor the family and loved oneswho share the food in yourhome. Everyone can benefitfrom these diet ideas!

You already know thatyou should try not to eatlarge amounts of “saturated”fat. This fat cannot bedigested by the body quicklyand often remains in yourblood for a long time. Thenit begins to stick to theinside of your blood vessels,making them narrower and

more difficult for blood topass through. Saturated fatis found in organ meats(such as liver), egg yolks(but not egg whites) and

fatty meats (sausage, baconand luncheon meats). It isalso hidden in baked goodssuch as cake and cookies.

There are many ways tokeep your dietary proteinlevel and your serum albu-min (a protein in the blood)high without also eating alot of fat. For example, youmay talk to your dietitianabout the number of eggsyou can eat per week, oryou can use egg substitutesfor scrambled eggs and bak-ing recipes.

You can lower fat bythrowing out the butter andinstead using special mar-garine now available that ismade from plant sterolesters, a heart-healthysource of fat. Two commonbrands are Take Control™and Benecol™. They looklike the margarine that ispackaged in tubs, but theycontain no trans fatty acids,which are bad for yourheart. Trans fatty acids arefound in most stick mar-garines and hydrogenatedfats (solid fats that come in

a can that are often used forfrying). It is recommendedthat you use two table-spoons of the newer mar-garine every day to help

reduce the “bad” fatin your body.

You can alsobegin to use health-ier oils in yourcooking. Olive oil,canola oil and soy-bean oil are better

for your heart. In Italy, oliveoil is used to dip bread in atthe table, instead of mar-garine or butter. Pour oliveoil in a small dish and addsome pepper, dried herbs,garlic powder or other lowsodium ingredients for extraflavor. The good fat will addcalories in a positive way.

Another way to reducethe “bad” fat in your body isto increase the fiber in yourdiet. If you have a fluidrestriction, dry fiber (foundin seeds, nuts, wheat, branand whole grains) is hard toadd to your diet withoutmaking you thirsty and con-stipated. Soft fiber, or

soluble fiber, is much betterbecause it will add soft bulkto your stool and helpremove “bad” fat. It will alsohelp decrease constipationwithout adding more fluid.Consider having one to oneand a half cups of oatmealfor breakfast. Other softtypes of fiber are found invegetables such as eggplant,okra, zucchini or yellowsquash. Ask your dietitianhow to include these andother soft fiber foods in yourdiet.

These are just a few sim-ple ideas to help make yourdiet more heart healthy.Talk to your dietitian andhealth care team membersabout other ideas. Newbrochures on lipid informa-tion will be available fromthe National KidneyFoundation soon. We allwant you and your family tolive a longer, healthier life!

About the AuthorJudy Beto, PhD, RD, FADA isa research associate at theLoyola University MedicalCenter Dialysis Unit inMaywood, IL. She has beeninvolved with kidneypatients for more than 25years. Dr. Beto was a mem-ber of the National KidneyFoundation Task Force thatdeveloped the K/DOQIguidelines for lipid manage-ment.

Eating Right for Your HeartBy Judy Beto, PhD, RD, FADA

FF

The good news isthat there are somelogical food choicesyou can make thatmay be helpful inprotecting your

heart.There are many ways to keep your dietary

protein level and your serum albumin

(a protein in the blood) high without

also eating a lot of fat.

Some Diet Suggestions

Fats and Oils Mono- and polyunsaturat-ed oils—safflower, sun-flower, canola, olive,peanut

Margarine made from anyoil and liquid forms; cho-lesterol lowering mar-garines made from plantsterols and plant stanols

Salad dressings madefrom any of the oils above

Hydrogenated and par-tially hydrogenated fatsCoconut, palm kernel,palm oil, coconut and coconut milk products

Butter, lard, hard short-ening, bacon fat, stickmargarine

Dressing made with eggyolk, cheese, sour creamor milk

Certain nuts like Brazilnuts and macadamianuts

FOOD CHOOSE DECREASE


8

“Sticks and Stones May Break Your By Bobbie Knotek, RN, BSN, CNN

Aman who hadjust started dial-ysis asked me

why the doctors and nurseskept bugging him to takehis phosphorus binderswhen he had more impor-tant things to worryabout–like trying to jugglework, dialysis and his fami-ly responsibilities. Ianswered his question bytelling him Patti’s story.

Patti was one of the firstpeople on dialysis I tookcare of when I started work-ing as a dialysis nurse in1975. A pretty youngwoman in her late 20s, Pattihad a husband, a full-timejob and a positive attitude.What no one knew was thatPatti also had bone disease!Patti’s bone disease did notbecome obvious until herthird year on dialysis, whenher bones started “crum-bling” before our eyes. Shesneezed and broke ribs; shebumped against a door andbroke her arm. Not a month

went by without a bonebreaking somewhere in herbody. After struggling fortwo years with severe bonepain, broken bones thatwould not heal and a quali-ty of life that kept gettingworse and worse, Pattimade one of the hardestdecisions of her life—shechose to stop dialysis.

As Patti’s story shows,bone disease caused by

chronic kidneydisease sneaks upon you. Not onlydoes bone diseasestart damagingbones in the earlystages of chronickidney disease(CKD), long beforedialysis or a kid-ney transplant isneeded, but thesymptoms of bonedamage (joint painor broken bones)do not show up for years. Eventhough you maythink your bonesare fine, bone dis-ease may be slowlyand quietly dam-aging your bones,

making them weaker andweaker.

The good news is that inthe years since I first metPatti, medical science hasdeveloped medicines to helpprevent crippling bone dis-ease. The bad news is thatthese medicines are not aCURE. You still need to doyour part in taking care ofyour bones. The first step is to learn about bones—what they do, how theywork, what they are made of, what controls them andhow kidney disease affectsthem.

HOW DO BONES WORK?

Bones are a living,changing part of your body.To stay healthy and strong,bones must break down“old bone” layers and build“new bone.” A team of spe-cial bone cells work togetherto balance this process. ■ “Building crew” bone

cells make new bone and repair damage toyour bones.“Messenger” bone cellscarry food and oxygen to the bones and removewaste products from thebones.

■ “Wrecking crew” bonecells break down thehard layer of old bone.When bone is brokendown, calcium is releasedinto the blood where itcan be used by yourmuscles and nerves.

WHAT ARE BONES MADE OF?

Bones are made of cells,fibers, blood vessels, nervesand large amounts of min-erals (mostly calcium andphosphorus). Bones havetwo main layers—an outsidelayer and an inside layer.The outside layer of bone ishard and very strong. It hassmall holes so blood vesselsand nerves can get to theinside of the bone. Theinside layer of the bone issoft and spongy and ismade of tiny pieces of bonethat mesh together, like thewire of a window screen.

WHAT CONTROLS BONEBREAKDOWN AND BUILDING?

Signals sent andreceived by your bone cells,intestines, kidneys andparathyroid gland keep yourbones healthy and strong.

The signals talk to the bonecells telling the buildingcrew cells to build bone andthe wrecking crew cells tobreak down bone andrelease calcium. The draw-ing on the next page showshow these signals workwhen the kidneys arehealthy.

HOW DOES CHRONIC KIDNEYDISEASE AFFECT YOUR

BONES?

With chronic kidney dis-ease, the signals that talk toyour bones and the otherparts of your body getmessed up. When this hap-pens, the vicious cycle ofbone disease begins:■ Damaged kidneys cannot

dump extra phosphorusinto the urine. This causes high phosphorusin your blood.

■ Damaged kidneys cannotmake Vitamin D to helpyour intestines take incalcium from digestingfood. This causes low cal-cium in your blood.

■ Like a playground teeter-totter, when the phos-phorus in your blood getstoo high, the calcium inyour blood drops evenlower.

■ When your parathyroidgland senses low calciumin the blood, it sends asignal to the wreckercrew bone cells, tellingthem to break down boneso calcium can bereleased into the blood toraise the calcium level.

■ As long as you have highlevels of phosphorus inyour blood, your parathy-roid gland will never turnoff—it will keep sendingsignals to the wreckingcrew bone cells telling

9


Bones…and so May Bone Disease!”

them to work overtime tobreak down bone andrelease calcium.

■ This cycle of high phos-phorous, low calcium andbone breakdown causesthe bone disease thatmakes your bones weakand brittle. Unless some-thing is done to breakthis cycle, bone diseasewill continue to causemore and more damage toyour bones.

Read the articles in thisnewspaper to find out howyou can work with your careteam to break the cycle ofbone disease.

Your bones need yourhelp NOW! F

F

Signals thatcontrol bones

Please make Vitamin D

Parathyroid glands in the necksend a message to kidneys,telling them to make vitamin D

The parathyroid glands stop send-ing messages to the kidneys whenthe blood has the right amount ofcalcium and vitamin D.

If calcium levels are still low, theparathyroid glands can also sendsignals directly to the bones,telling them to break down oldbone so calcium stored in thebone can be sent to the blood.

Break downbone and

release calcium

Calcium is sent to the bones tohelp build newbone and repairold bone.

The kidneys make vitaminD and send it to the intes-tine through the blood-stream.

The kidneys also help yourbody get rid of phosphorus byadding it to the urine.

Vitamin D

In the intestine,vitamin D helpsthe body “take”

calcium fromdigesting food.

Calcium

For My GrandsonBy Charles Bahus

Charles, by nature, you are my grandson by nameCharles, by God’s grace, you are as my son to reign

Charles, by heaven’s orders, Grandma and I enjoyyour being

Charles, by God’s laws, we guide you with his proper steering

Charles, by God’s grace, you are as my son to reignCharles, Grandma and I share our love to protect you

from painCharles, please let us protect you against evil willsCharles, we ask that you refrain from all ill

Charles, by heaven’s orders, Grandma and I enjoy your beingCharles, we want everyone to know the good we are seeingCharles, provide us the privilege to enjoy your good worksCharles, we wish you the joys to gain many special perks

Charles, by God’s law, we guide with proper steeringCharles, provide us with joy we will be proud of hearingCharles, Grandma and I and family love you with all our

heartsCharles, even through eternity we will never ever

be apart

Written with love, Charles J. Bahus

Charles Bahus, who dialyzes inIndiana, Pa., wrote this poem

when his grandson Charlesbegan high school.

The Big MachineBy Thelma “Juanita” Paynter

As I come through the doorcounting tiles on the floor

going to the big machinefor 3 hours (12 it seems)

it takes out our bloodand puts it back incleans it all with the help of salinesometimes we think of early dayswhen we could work or even playnow we depend on the big machineto get us through another day

The big machine, the big machinewhere would we be withoutthe big machine

So let’s pray to God every dayas on the machine we sit or laythat he will be with usand guide the nursesbecause without themwe wouldn’t be onthe big machine

Thelma Paynter dialyzes in Oceana, W.V.P

oet

ryC

or n

e r

12


10

Heart disease remains themost common cause of ill-ness and death for people

who have received a kidney transplant.Common causes for heart disease arehigh blood pressure, diabetes, ciga-rette smoking and dyslipidemia (hav-ing the wrong amount of fat in theblood). (1)

The rate of lipid (fat) abnormalitiesafter transplant is very high.

• Over 60 percent of kidney trans-plant recipients have total choles-terol greater than 240 mb/dL (thenormal level is less than200mb/dL);

• 60 percent have a level of LDL (badcholesterol) greater that 130 mg/dL(normal is less than 100 mg/dL);

• and 15 percent have an HDL (goodcholesterol) less than 35 mg/dL(normal is greater than 40mg/dL).(2)

These lipid abnormalities in trans-plant recipients have several causes.People with a family history of lipidproblems tend to inherit this trait andthere is not much we can do aboutthat! Prednisone and other immuno-suppressive medications such ascyclosporine, sirolimus or a combina-tion of these can contribute to highlipids. Lifestyle can also add to theproblem, especially through poordietary habits, obesity and lack ofexercise.

Why is dyslipidemia harmful? Itleads to atherosclerosis, which is abuild up of waste in the lining of bloodvessels. This build up can cause heartattacks, strokes, poor circulation inthe legs and feet and it can even affectthe function of the kidney. Changes inthe blood vessels of the kidney canlead to chronic kidney deteriorationbecause these changes affect the kid-ney’s ability to filter waste products.

Fortunately, recipients can controlseveral of the causes of dyslipidemia. Adiet low in calories (especially caloriesfrom fats), physical exercise and avoid-ance of large amounts of alcohol arehelpful. No one can control yourlifestyle except you, the transplantrecipient.

But some causes of dyslipidemiaare out of your control, particularlythe medications that must be takenafter receiving a kidney transplant.Cyclosporine usage started in the early1980s and has been described as thewonder drug of transplantation.However, it has been associated withhigher lipid levels. The same is true ofsteroids and sirolimus. Tacrolimus hasbeen shown to cause less of a problemwith high cholesterol thancyclosporine.(3) Some highblood pressure medications,such as water pills and agroup of drugs called beta-blockers, are known to con-tribute to lipid problems. Thereasons for all these thingsare too complicated to dis-cuss here, but the benefits ofthese medications have cer-tainly improved the lives ofpeople with kidney trans-plants. The end result is weare faced with controlling themedications’ side effects,including high cholesterol.

There is a fairly newgroup of drugs, called statins,which are being used to con-trol cholesterol. Some exam-ples of these are Lipitor,Mevacor andZocor. Theycan, however,interact in anegative waywithcyclosporineandtacrolimus,so the levelsof these statins must be watched care-fully. One side effect of statins ismyopathy (muscle pain and weak-ness). If you get this symptom whiletaking statins, you should report it toyour health care team. Liver functionshould also be monitored since theliver is important in the handling ofstatin medications.

The importance of close monitoringafter kidney transplantation cannot bestressed enough. The short-term suc-cess is better than it has ever been.Close medical follow-up to manage

long-term complications such as bonedisease and dyslipidemia will help toimprove outcomes. Whether follow-upis done in a transplant clinic or by aprimary care physician (such as a fam-ily doctor), it is necessary to checkmore than just kidney function. Athorough physical exam is needed atleast once a year. It will make a differ-ence in living a long, productive lifewith such a precious gift.

References:

1. Kasiske BL, VazquezMA, Harmon WE, et al.Recommendations for theOutpatient Surveillance ofRenal TransplantRecipients. American

Society of Transplantation. Journalof the American Society ofNephrology 2000; 11 (supp 15); 51-86.

2. Van don Dorpel MA, Ghanem H,Rischen vos J, et al. Conversionfrom Cyclosporin A to AzathioprineTreatment improves LDL Oxidationin Kidney Transplant Recipients.Kidney in 1997; 51(5): 1608-12.

3. Fellstrom B: Bio Drugs 15:261,2001.

Lipid Abnormalities After Kidney TransplantationBy Linda Harte, RN, BSN, MA, CNN, CCTC

FF

A diet low in calories

(especially calories from

fats), physical exercise and

avoidance of excessive

amounts of alcohol are

measures that can be taken.

11


T he NationalKidneyFoundation’s

newest chronic kidney dis-ease (CKD) guidelines dealwith management of lipidproblems and bone disease.Most of these new guidelinesonly apply to adults, butsome of them apply to chil-dren and adolescents.

Recent studies have sug-gested that diagnosis andtreatment of high lipid levelsis important in pediatricpatients, particularly adoles-cents. It is thought that highlipid levels in adolescencemay result in greater risk ofcardiovascular (heart andblood vessel) disease. Thismay be true for youngerchildren as well, but at thistime this is not supportedby clear evidence. Becausewe now know the dangers ofhigh lipid levels in adoles-cence, this article will brieflysummarize how the guide-lines directly affect the careof adolescents with CKD andthose on dialysis.

Adolescents who are ondialysis, those who havereceived transplants andothers with CKD should allbe evaluated for abnormallipid levels. They shouldhave blood drawn to checkfor cholesterol, high-densitylipoprotein (HDL), low-densi-ty lipoprotein (LDL) and

triglycerides (lipid profile).These levels should bechecked when the adoles-cent is first diagnosed withCKD, and then on a yearlybasis. If there is a change inthe adolescent’s medicalcondition or treatment,these lipid levels should bechecked more often.

The lipid levels should bemeasured after an overnightfast, if possible, for the mostaccurate measurement. Foradolescents on hemodialysis,lipid levels should be meas-ured before dialysis or onnondialysis days.

If adolescents have highlipid levels, they should bescreened for non-kidneycauses of the high lipid lev-els, such as diabetes, liverdisease or medications.

For adolescents with afasting triglyceride levelgreater than or equal to 500mg/dl that cannot be cor-rected by fixing a nonkidneycause, therapeutic lifestylechanges (TLC) should beconsidered. These changesinclude limiting fat in thediet and exercising more.

For adolescents with anLDL level greater than orequal to 130 mg/dl, treat-ment should be consideredto lower the LDL level to

below 130 mg/dl. TLC asdescribed above should betried, but if the LDL remainshigh, treatment with med-ications to lower lipid levelsshould be considered.

For adolescents with anon-HDL cholesterol (totalcholesterol minus HDL)greater than or equal to 160mg/dl, in certain situations, treatment with TLC or med-ications may be needed tokeep the non-HDL choles-terol below 160 mg/dl.

Hopefully, these newguidelines will help doctorstake care of adolescents whohave CKD, are on dialysis orhave received a kidney trans-plant. Recent studies have

revealed that young adults(20 to 40 years old) withadvanced CKD have a muchhigher risk for cardiovasculardisease than healthy individ-uals of the same age.

Although there are little datain younger patients, it hasbeen shown that cardiovas-cular disease accounts forapproximately 25 percent ofdeaths in children with CKDwho are less than 18 years ofage, making it the secondleading cause of death in thispopulation. Therefore, it isextremely important thatnephrologists begin to screenhigh lipid levels in adoles-cents with CKD, those ondialysis and those who have akidney transplant.

Do Children Need to Watch Lipids, Too?

By Barbara Fivush, MD

FF

“The lipid levels should be measured

after an overnight fast, if possible,

for the most accurate measurement.”

and the National Kidney Foundation

want to help you show all the special people in your lifeexactly how much they mean to you and help support the

National Kidney Foundation in the process!

Order today at www.1800flowers.comor call 1-800-356-9377

and 1-800-FLOWERS.COM® will give 10 percent* of the net proceeds from your purchase to the National Kidney Foundation.

Just use the code KIDNEY when ordering.

©2002 1-800-FLOWERS.COM, INC.

*Items may vary and are subject to delivery rules and times. Offer valid

online and by phone. Offers cannot be combined, are not available

on all products and are subject to restrictions and limitations. Offer

valid through 12/31/03. Void where prohibited.

1-800-FLOWERS.COM® uses Secure Socket Layer (SSL) encryptiontechnology to secure its Web site.


12

It may seem like diet and nutri-tion advice changes frequentlyin popular magazines and news

articles. One time we are told to eatmore of a certain food and then wehear that the same food can be bad forus. It seems to go in circles and can beconfusing at times. You may find thatto be the case with dietary advice forthose with kidney disease. The bestfood or medication choices change aswe learn more. Also, very often, theadvice is exactly the opposite of advicethat is given to someone with normalkidney function. So what you hear onthe radio or read in the paper may notbe right for you.

Remember, you canmake a difference in yourown care by following theadvice of your health careteam and by participating inthe decisions that affect youand your life!

About the AuthorLinda McCann, RD, CSR, LD is Director of Nutrition Servicesfor Satellite Healthcare inRedwood City, CA and was amember of the K/DOQI Boneand Mineral Metabolism WorkGroup.

FF

Over the past few years, we havelearned a lot more about the treatmentof bone problems that can result fromkidney disease. We have learned that:• It is important to limit the amount

of phosphorus in the diet in earlykidney disease and after startingdialysis.

• Large amounts of calcium may notbe appropriate, since foods high incalcium usually have a lot of phos-phorus.

• Bone disease starts as kidney func-tion decreases and should be moni-tored and treated earlier in theprocess of kidney disease.

• Vitamin D is needed for those withCKD, but the body needs a special,"active" form of it, that your doctormay give you.

• When the kidneys are not able to dotheir share of the work, balancingcalcium and phosphorus takes theefforts of the health care team.

If you have kidney disease, the

most important part of the team is YOU!

The doctor, nurse or dietitian can give

advice, but you are the one who has to

do the work every day, such as:

• taking medications, like phosphate

binders, as directed with meals or

snacks

• making good food choices

• following your dialysis treatment

prescription.

If you have decreasing kidney function, but are not on dialysis:

• Check with your doctor about your need for vitamin D and phosphate

binders.

• Make sure that your blood levels of calcium, phosphorus and parathyroid

hormone (PTH) are being monitored. If your PTH is high, you will need to

limit dietary phosphorus and possibly take a phosphate binder even if cal-

cium and phosphorus levels are normal. PTH causes the loss of calcium

from the bones.

• Do not take any over the counter medications or herbal products without

checking with your doctor, because their effects are not well understood,

and they may be harmful.

• Do not change your diet to match what is recommended to the general

public without talking to your doctor or a dietitian.

• Do not follow any fad diets, especially high protein diets.

• Talk to your doctor about how your bone health is being monitored and if

you need any medications or supplements to keep your bones healthy.

• Do not take any medications or herbal products without discussing them

with your doctor.

If you are on dialysis:• Know your calcium, phospho-rus and PTH levels and workwith your health care team tokeep them in appropriate targetranges.• Eat enough protein and calories,but make choices that are lower indietary phosphate. Limit thosefoods that are very high in phos-phate.

• Take your phosphate binders asdirected with every meal or snack.Binders should be taken immediatelywhile eating to work best. Carry somewith you even if you are dining out.Work with your health care team to findthe best phosphate binder for you—oneyou can and will take!• Do not take calcium or vitamin D productsunless you are told to do so by your doctor,nurse or dietitian. Commonly, people aregiven a special vitamin D while on dialysis,but this medication will be held if your blood

calcium and/or phosphorus are high,because it may increase them further.• Make sure you get your prescribed dialysistreatment (come to treatment on time andstay for your full treatment; do not skiptreatments).• If you cannot keep your calcium, phosphorus

and PTH within target ranges, talk with yourhealth care team about what else you cando.

• Do not use calcium-fortified foods, over thecounter medication, supplements or herbalproducts without talking to the doctor ordietitian. Some may have harmful effects.

Taking Care of Your BonesBy Linda McCann, RD, CSR, LD

If you have a transplanted

kidney:

• Work with your health care

team to make sure you are

using the least amount of

anti-rejection medication to

protect your transplant, but

minimize bone problems.

Some anti-rejection medica-

tions may decrease calcium

levels.

• Talk to your doctor about how

your bone health is being

monitored and if you need any

medications or supplements to

keep your bones healthy.

• Do not take any medications or

herbal products without dis-

cussing them with your doc-

tor.

13


As you read the articlesin this issue, you may bethinking, “Great! Bone dis-ease and cholesterol are twomore health problems toworry about.” Just remem-ber: a lot of the recommen-dations for dealing withthese health problems areclosely related to things thatyou already know—watchyour diet, increase yourphysical activity and workwith your health care team.

But sometimes there ismore to staying healthy thanjust a positive attitude. Bothbone disease and cholesterolproblems are often treatedwith medication.

Sometimes it becomesdifficult to take these med-ications because of the cost.Medications to manage bonedisease and cholesterol canbe expensive, but therecould be help available,especially for those in finan-cial need. One of theseresources is www.helpingpatients.orgThis is a directory of pre-scription assistance pro-grams of various pharma-ceutical companies. ThisWeb site has links to otherhelpful sites for medications,including www.RxHope.comand the National Council ofAging's Benefits CheckUpWeb site (www.benefitscheckuprx.com). Several other sites,

such as www.RxAssist.organd www.needymeds.com,allow you to search for infor-mation by program or drugname. These Web sites haveapplications for assistanceavailable. You might want tocheck out these resourcesand bring the information toyour doctor or social workerand ask them to assist youin getting the medication.

Some states have statekidney programs that mightpay for medications not cov-ered by another source. TheMissouri Kidney Program(800-733-7345) can help youdetermine if your state has aprogram or not. Some states’Medicaid programs pay formedications that mightinclude phosphorus bindersand cholesterol medications.These resources vary from state to state. You can findcontact information for yourstate’s Medicaid departmenton the Web at

cms.hhs.gov/medicaid/mcontact.asp or by calling877-267-2323. LocalAgencies on Aging may beable to assist people age 65or older who cannot affordtheir medications(www.eldercare.gov or800-677-1116). The Health

Resources and ServicesAdministration (888-ASK-HRSA) provides informa-tion about communityhealth centers that mayoffer prescription assis-tance to low-income individuals.

Sometimes intravenousmedications (medicine putdirectly into your blood) areused during dialysis to helpkeep your bones healthy.Medicare covers some of thecost of these medications,and the makers of the medi-cines sometimes have pro-

grams to help peoplepay for medicationsthey need but cannotafford. Ask yoursocial worker aboutany of theseresources.

Being activelyinvolved in yourhealth is one of thebest things you can

do to live successfully withkidney disease. Strongbones are important whenyou think about doing thethings you like to do.Managing calcium, phospho-rus and fats in your foodcan also help you live longand live well. FF

Can You Connect the Dots?By Mary Beth Callahan, ACSW/LMSW-ACP

Kidney Disease Financial AssistanceBone Disease

Medication Heart Health

People diagnosed with chronic kidney disease

may feel overwhelmed by information: lab

values, medications, diet and exercise are

just a few of the things to keep track of.

JoinTo find out about the many services and

activities offered in your community or

to become a member of the Patient

and Family Council, call the National

Kidney Foundation at

1-800-622-9010or visit us at

www.kidney.org☞ MEMBERSHIP IS FREE


14

Medicare Payments for Prescription DrugsBy Dolph Chianchiano, JD, MPA

Among the few uniqueexceptions to the currentMedicare policy are: drugs toprevent rejection of trans-planted organs, drugs thatfacilitate clotting factors fortreatment of hemophilia andoral cancer therapy (but cov-erage for cancer medicationsis limited to drugs that havea more expensive injectableversion available.) The onlyreason that Medicare coversthe drugs mentioned aboveis because Congress hasdirected that the programmake these payments.Beneficiaries are responsiblefor 20 percent of the cost ofthese drugs.

With that in mind, advo-cates for payment for non-calcium based phosphatebinders have gone toWashington to seek legisla-tion that would makeMedicare specifically coverthese medications. Proposalswere introduced in both theHouse of Representativesand the U.S. Senate in2001, but these bills werenot passed by either cham-ber in the 107th Congress.They have not yet been rein-troduced for consideration inthe 108th Congress thatbegan its first session in2003. Before Medicare willpay for noncalcium phos-phate binders under theEnd Stage Renal Diseaseprogram, both the U.S.House of Representativesand the U.S. Senate mustvote in favor of this require-ment and the Presidentmust agree to provide thisbenefit. Noncalcium phos-phate binders would also becovered under the new gen-

eral Medicare prescriptiondrug benefit, but Medicaremay only pay 50 percent.

Even if a person mustget a medication by injectionin a physician’s office or at aclinic, however, there is noguarantee that Medicare willpay for it. Knowing howMedicare policy determinesif an injectable drug is cov-ered may give us a clueabout how Medicare policyfor new oral medications willbe determined.

Medicare has contractswith certain insurance com-panies to process payment

requests at the state level.Each of these contractorscan determine local medicalreview policies which saywhether Medicare will coveran injectable drug and, if so,the conditions of that cover-age, if a national coveragedecision has not been pub-lished. There is no require-ment that all local medicalreview policies be the sameand there is nothing to pre-vent a Medicare contractorfrom reversing a local med-ical review policy. Becauseof this it is possible forsomeone to receive an

injectable medication atMedicare expense in Chicagobut not in Atlanta. Thus, theMedicare contractor inSouth Carolina, for example,will pay only for vitamin Din the form of calcitrol.

Another way Medicaredevelops policy for paymentfor injectable drugs isthrough national coveragedecisions. A recent nationalcoverage decision thataffects people on dialysiswho have Medicare concernsthe drug levocarnitine,which is used to treat ane-mia and low blood pressure.Anyone can request a

national coverage decisionfor a treatment. Therequestor must submit themedical and scientific infor-mation that would show theneed for payment. Therequestor must explainwhether the proposed cover-age is for uses alreadyapproved by the Food andDrug Administration.

The rules stating howapplications for nationalcoverage decisions are han-dled give Medicare severalways to manage theserequests. Medicare can

make a decision against cov-ering the medication or serv-ice—then local Medicarecontractors cannot pay forthe drug or service.Medicare can also decidethat there should be nonational coverage decision,which then allows each localcontractor to decide whetherit will pay for the drug orservice in question. Finally,if Medicare issues a positivecoverage decision, it can belimited to certain symptoms.

Medicare coverage forlevocarnitine is an exampleof the first of the last twooptions. Payment will begiven for individuals on dial-ysis with documented carni-tine deficiency, but only ifthey have signs and symp-toms of (1) erythropoietin-resistant anemia (erythro-poietin is normally used totreat anemia) or (2) very lowblood pressure during dialy-sis that gets in the way ofdialysis treatment. Coverageis limited to these conditionsbecause Medicare did notaccept evidence that carnitoris effective for other uses.

For additional informa-tion concerning legislationor regulation that affects theability of those with chronickidney disease to obtain the medications they need,please phone the NKFGovernment Relations officeat 800-889-9559.

About the AuthorDolph Chianchiano, JD, MPA,is the National KidneyFoundation’s Vice Presidentof Health Policy andResearch.

With rare exceptions, Medicare covers only those drugs (for outpatients) that have to be

given by injection in a doctor’s office or clinic. Medicare does not pay for the tablets or

liquids that people give themselves, even if a physician has prescribed them. This gap in

coverage is why both national political parties have promised to change Medicare benefits to include

prescription drugs and explains why people on dialysis must find other resources to pay for phosphate

binders, including those that are not calcium based.

FF

15


When a person has kid-ney failure, the kidney can-not eliminate phosphorus.The high level of phosphoruscauses the parathyroid gland(in the neck) to secrete a hor-mone (PTH). High levels ofthis hormone “pull” calciumout of the bones. This cancause bone pain, muscleweakness and fractures. Thekind of bone disease thatpeople with kidney failure getis called renal osteodystro-phy. Avoiding foods high inphosphorus and taking phos-phate binders (calcium car-bonate, calcium acetate) helpkeep the calcium and phos-phorus levels in balance.

Failed kidneys also can-not convert vitamin D intoan active form to absorb cal-cium in the intestines.Medications such asRocaltrol help with thisabsorption to decrease thedegree of bone disease.

Although bone diseasecan improve with kidneytransplantation, close moni-toring and treatment is stillnecessary. High levels ofPTH continue to circulate in

the body until the parathy-roid gland is “turned off.”Until then, the bones willlose calcium.

Another cause of bonedisease after kidney trans-plantation is the use ofsteroids (prednisone) to pre-vent rejection. Theydecrease the calciumabsorption in the intestinesand increase calcium lossby the kidney. This pro-gresses rapidly in the earlymonths after kidney trans-plantation (when steroiddoses are higher) and stabi-lizes one to two years aftertransplantation, as the doseis lowered.

Healthy postmenopausalwomen often have a problemwith bone weakness (osteo-porosis) because of a lack ofhormones. This can be evenmore of a problem forwomen who already havebone disease because of kid-ney problems.

If your diet does nothave enough protein andcalcium, this may also con-tribute to bone weakness.

There are other factors thatcause bone disease aftertransplantation, but onlythe more common ones havebeen reviewed.

So what can be done toreduce the risks and treatbone disease after kidneytransplantation? Control ofcalcium and phosphoruslevels before transplantationwith phosphate binders anddiet (discussed elsewhere inthe publication) is vital toprevent bone loss.

Calcium and phospho-rus levels are as importantas checking the creatinine (awaste product in the blood)after transplant surgery.The parathyroid gland stilltells the kidney to get rid ofphosphorus. Phosphate sup-plements may be needed fora while until this glandreturns to normal and thekidney is getting rid of theright amount of phosphoruson its own. If this gland con-tinues to over-function, itmay be necessary to removeit with surgery (parathry-roidectomy), although this isnot done as often now that

there are newer and moreeffective phosphate bindersand vitamin D preparations.

To treat bone losscaused by steroids, loweringthe dose as rapidly as possi-ble can help. With the use ofnewer, more effectiveimmunosuppressants, lowersteroid doses can and usu-ally are prescribed by doc-tors. This, along with calci-um and vitamin D, can leadto healthier bones.

Weight-bearing exercise(like a good walking pro-gram), smoking cessationand a good diet help preventbone disease, too. Theselifestyle changes should bestarted before transplanta-tion and continued after-wards.

Sources:

2000 Annual Report of the U.S.Scientific Registry forTransplant Recipients and theOrgan Procurement Network:Transplant Data: 1990-1999.

Heaf, JG: Bone Disease AfterRenal Transplantation.Transplantation, 75: 315-325, 2003.

Waiting for a Transplant? Watch Your Minerals Now!

By Linda Harte, RN, BSN, MA, CNN, CCTC

FF

Bone disease is a common complication in people with chronic kidney disease. It often

improves after a successful kidney transplant, but complications such as bone fractures

due to loss of bone strength frequently can occur.

The following foodsare high in phosphorus.Talk to your dietitianabout alternatives tothese foods. As a certainamount of phosphorus isdifficult to avoid, be sureto take phosphatebinders with your mealsif it has been prescribedto you.

MILK and milkproductsincluding

cheese, cottagecheese, ice

cream, custard,pudding, yogurt

and soupsmade with milk

or cream

VEGETABLES such

as artichokes, dried beans,

broccoli, brussels sprouts,

asparagus, sweet potato,

corn and

green

peas

PROTEINfoods such

as oysters,carp, sardines, fish roe, beef

liver, chickenliver and

organmeats

BEVERAGESsuch as

beer, ale, darkcolas, drinksmade with

milk, cocoa,cocoa mixes

andchocolate

milk

Other foods such as nuts, seeds, wheat germ, whole grainproducts, caramels, brewer’s yeast and bran cereals.


16

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Excuses are common among those who are reluctant totake their phosphate binders as often as they should. I thoughtit might be interesting to share some statements made by peo-ple with CKD to explain their reasons for not taking their med-icines, especially phosphate binders, as prescribed.

Do any of theseremarks seem familiar toyou? Rather than makingexcuses or placing blame,let's use this as a goodopportunity to get backon track with a strategyfor taking your phosphatebinders on time, whenthey have their greatesteffect. The value of takingbinders with every snackand meal is without adoubt one of the most important decisions a person with CKDcan make. If you don't believe it for yourself, no one can makeit seem important to you.

Kidney failure affects the functioning of many systems inthe body. One of the functions of the kidneys is to filter andremove excess phosphorus from the blood. When the phos-

phorus level becomes too high, the blood needs more calci-um to balance it out. Unfortunately, this much-needed calci-um is often taken from your bones, which can be debilitatingand painful. Osteoporosis, or bone loss and weakening, canalso become a problem. All of this can result from the sole

act of an individual nottaking phosphorusbinders as prescribed.

Thankfully, you canlower the risk of harmcaused by high phospho-rus. Taking a phosphatebinder as directed byyour doctor will guardthe bones while control-ling the levels of calciumand PTH. Take yourphosphate binders when

you eat, and remember that every missed dose adds to agrowing problem later on. If you cannot afford phosphatebinders, speak with your dialysis social worker and dietitianand advise them of your financial problems. Help is availableonly when someone is alerted to your need! Speak up soyour bones will not suffer!

TOP 10 Reasons for NOT Taking Phosphate BindersBy Dale Ester

T aking medications as prescribed can be hard, especially when chronic kidney disease (CKD)makes so many demands on a person’s schedule. You might even be tempted to skip a medicationlike a phosphate binder, that seems less important. However, knowing the impact phosphate

binders can have on your life and longevity will make you realize this would not be a wise choice.

THE TOP 10 REASONS:10. OOPS, I forgot! No big deal anyway!

9. Nothing ever happens if I forget to take my binders!8. I’ll take my binders — later — when I get back home.7. The doctor can fix whatever goes wrong, right?6. No one is ever going to know, so who really cares?

5. Nobody is watching whether I do or don’t take my binders.4. I feel okay right now, so why do I need to take phosphate

binders?3. It’s a major inconvenience for me to take my binders

when I eat. 2. My friends don’t take binders, so why should I?

1. The binders are so expensive, I can’t afford them.

FF

pages 4-5 page 7 pages 10 and 15 bone disease: a ... a common language on which to base diagnosis...

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