What You Should Know and Do About Chronic Kidney Disease · What You Should Know and Do About Kidney Disease continued from page 1 high salt foods. Work with a dietitian to plan a

This publication is a Family Focus Program of the

National Kidney Foundation and is made possible in part through

an educational grant from , our

Title and Founding Sponsor of K/DOQI

in this issue

VOLUME 11 NUMBER 2 SPRING 2002

The Renal Community’s Newspaper

Fitnesspage 5

Good Nutritionpage 4

Patient and Family Cornerpage 7

The More You Knowpage 9

The Parent Connectionpage 11

Transplant Columnpage 13

National KidneyFoundation®

About 260,000 people in theU.S. are receiving dialysis treatment for kidney failure.

Probably at least 10 times thisnumber have kidney disease that willneed dialysis during their lifetime. Inaddition, about 13-15 millionAmericans have some decrease inkidney function.

Early treatment can prevent or slowthe progress of kidney disease and itscomplications. Learn how kidneydisease is diagnosed and treated sothat you can work with your doctor tostay as healthy as possible.

About 10 to14 percent of familymembers of people with chronickidney disease are at risk for kidneydisease. This number is based onresults from screening a largepopulation for abnormal kidneyfunction, high blood pressure andprotein in the urine. The people mostlikely to have abnormal findings werethose in whom a family member hadknown chronic kidney disease. Ifthere is no family history of kidneydisease, then the likelihood of findingone of the above problems falls to oneto two percent when screening a large"healthy" group. Therefore, if yourfamily members are at risk, theyshould know their:

Early treatment is better. Studieshave shown that lowering high bloodpressure, decreasing the amount ofprotein in the urine and lowering highcholesterol levels in the blood canslow the decrease in kidney functionin those people who have abnormal

kidney function. People who aretreated early do better than those whoare treated late in the course of theirdisease. You also have to take part inyour care to do well. Below are somethings that you can do to improveyour overall health and, hopefully,your quality of life.

1) Change how you do things:☛Weight loss: Consider speaking

with a dietitian about a plan tolose weight if you weigh morethan you should for your sex, ageand height. Your doctor can tellyou what your ideal weight shouldbe.

☛Regular exercise: Plan to do anexercise program at least fourtimes per week for 20 to 30minutes per session. Yourexercise regimen can range fromsuch things as walking, using atreadmill or working out withweights to playing basketball.

☛Diet: Your blood pressure can falljust by eating a diet that doesn’tcontain a lot of salt. Some peoplehave blood pressure thatincreases more than others due to

What You Should Know and Do AboutChronic Kidney Disease

By Theodore Steinman, MD

C H R O N I C K I D N E Y D I S E A S E

continued on page 3

WHAT DOES CHRONIC KIDNEY

DISEASE MEAN TO YOU?

DIAGNOSIS OF KIDNEY DISEASE

1) Blood creatinine level –a routinetest of kidney function that is doneusing a blood sample. Creatinine is achemical in the blood that comesfrom the normal functioning ofmuscle in the body. The kidney is theonly organ that gets rid of thischemical. As kidney function getsworse, the amount of creatinineexcreted in the urine goes down andthe levels in the blood go up. Ask yourdoctor what yours is and whatpercent of normal kidney functionyou have 2) Urine protein –normal is

negative, meaning that there is noprotein in the urine. A positive test isabnormal and further testing (such asadditional blood studies, collection ofa 24 hour urine and maybe a kidneybiopsy) is needed because this can bea sign of chronic kidney disease.3) Blood pressure – "normal" is

about 120/80. High blood pressure(hypertension) is a level higher than140/90. People with kidney diseaseand even those with normal kidneyfunction should have blood pressureas close to normal as possiblebecause high blood pressure makeskidney function worse.

TREATMENT OF EARLY KIDNEY DISEASE

2

Family Focus Volume 11 Number 2

Chronic kidney disease…..what do these words reallymean? For years you may

have heard other words used todescribe various stages of kidneydisease. Many of us often used EndStage Renal Disease, or ESRD, todescribe the point at which a personrequired either dialysis or a kidneytransplant to remain alive. While theuse of the words "end stage" simplyreferred to the fact that the kidneyhad reached a stage where it nolonger functioned well enough tosustain life, the words used soundedmuch more ominous. When attempt-ing to describe the population ofindividuals who had kidney disease,eventually requiring dialysis ortransplantation, the terms pre-ESRD or pre-dialysis were typically

used. However, when someone usedthese words, what exactly did itmean? Was the individual inquestion at the very early stages ofimpairment or was the person closeto requiring dialysis? As you know,that is a very wide range. Historic-ally, less attention was paid to thesegment of the population who hadearly signs of kidney disease.Greater attention was paid totreating and educating those whowould soon experience kidneyfailure and need to make atreatment choice.

The National Kidney Foundation(NKF) set about attempting tosimplify the terminology used and tomake it more universal. Thus, thewords chronic kidney disease havebeen clarified to encompass allstages of kidney disease, rangingfrom those who do not yet haveproblems with their kidney’sfunction to those who do have somelevel of kidney impairment (to thosewho require dialysis or a kidneytransplant). The words kidneyfailure are being suggested toreplace the use of the term ESRD.The first new set of clinical practiceguidelines under the NKF’s KidneyDisease Outcomes Quality Initiative

Karren King

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) 889-2210http://www.kidney.org

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

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

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

Fitness Editor:Tiffany Shubert, MS, PTSan Francisco, CA

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

Pediatric Editor: Barbara Fivush, MDBaltimore, MD

Patient Editor:Dale EsterGlendale, AZ

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, MSW, CSW

Executive Editor: Sara Kosowsky

Managing Editor: Emily Zelner

Production Manager: Sunil Vyas

Design Director: Oumaya Abi Saab

FROM THE EDITOR

If you’d like to

contribute to the

National Kidney

Foundation, visit

our Web site at

www.kidney.org or call

(800) 622-9010to make your

donation as a

Family Focus reader.

(K/DOQI), Chronic Kidney Disease:Education, Classification andStratification, not only aids us inclarifying the terminology used, itgoes a step further by establishingimportant medical criteria to aid indifferentiating the five stages ofchronic kidney disease.

While this issue is devoted tochronic kidney disease (CKD), frombeginning diagnosis to requiringdialysis or transplantation, much ofthe content focuses on the newK/DOQI guidelines. I have greatconfidence that these guidelines willaid tremendously in not onlyassuring that we all "are on thesame page" with the language weuse, but more importantly, as withthe NKF guidelines that came beforethem, that the care provided to allindividuals who have CKD will begreatly enhanced because of them.

For you, the reader, the informa-tion provided in this, and everyissue of Family Focus, does no goodif you simply read it and file it away.Don’t be passive readers orrecipients of care! Take thisinformation and use it. Askquestions of your doctors and otherhealth care providers, make alifestyle change that will improveyour health, encourage your familymembers to be evaluated for signs ofkidney disease. Make Family Focusmake a difference in your life!

Karren King, MSW, ACSW, LCSWFor the Editorial Board

FF

http://www.kidney.org



3

What You Should Know and Do About Kidney Diseasecontinued from page 1

high salt foods. Work with adietitian to plan a low salt diet.

☛Alcohol: Drinking alcoholicbeverages can make your bloodpressure high. Men should haveno more than two small drinks aday and women one drink daily.

☛Smoking: Cutting down is notokay. You must stop completely.Smoking causes a narrowing ofyour blood vessels that will causea higher blood pressure and lessblood flow to your kidneys. Peoplewho smoke have a much greaterchance of developing heart andlung disease, and these diseasesmake treating kidney diseasemuch more difficult.

2) Medications: Discuss bloodpressure medicines with your doctorand find out what works best for you.If you develop side effects such asdizziness, nausea, leg swelling, head-aches or fatigue from your specifichigh blood pressure medicine, it isimportant that you don’t simply stoptaking it. Discuss the problem withyour doctor, who can suggestalternative treatment.

3) Check your blood pressureregularly: Ask your doctor or nurse toteach you how to take your bloodpressure. Then take it at home, write itdown and discuss it with your doctor.Many blood pressure readings overtime, including some taken outside ofthe doctor’s office, will tell your doctorwhat medicines you need in what doseto control your blood pressure.

4) Protein in the urine cannot only bea sign of chronic kidney disease; it cancause kidney disease to get worse. Askyour doctor to check your urine forprotein. Some medicines, angiotensinconverting enzyme inhibitors (ACEI)and angiotensin receptor blockers(ARB), have been shown to decreaseprotein in the urine and can slowprogress of kidney disease in some people.

associated with not keeping bodyprotein at normal levels. Your dietitiancan help you select these foods.

4) Anemia – Anemia occurs whenyour red blood cells are in shortsupply. Red blood cells carry oxygenfrom your lungs to all your organs andtissues, providing energy for your dailyactivities. When diseased kidneys nolonger make enough of a hormone thattells your bone marrow to make morered blood cells, anemia can result.Treatment may include a special diet,supplements and medication.

Making an access (fistula) to yourblood vessels should be done at leastsix months before you need dialysis sothat it is ready when you need it. Afistula is the preferred access becauseit is associated with fewer complica-tions from clotting and infection. If youdo not have an access in your armwhen it is time to start dialysis, youmay need to be in the hospital andhave a line for dialysis placed in ablood vessel in your neck. Patientswho have to start dialysis as anemergency usually have more difficultyat least in the beginning than thosewho have been able to plan ahead foraccess placement. If at all possible, itis important for you to discuss theplacement of your dialysis access withyour doctor before you actually needdialysis. Sometimes an AV fistula doesnot "mature." That is, the blood vesselsdo not get large enough or strongenough to use. Or the surgeon mayexamine the blood vessels and decidethat an AV fistula doesn't work. Thesurgeon may place a "graft" made ofman-made material, a hollow artificialblood vessel, that can be used fordialysis.

In summary, treatment of chronickidney disease may stop or slow thespeed at which kidneys get worse.You should know what treatment ispossible and talk with your doctor.A kidney doctor can help yourregular doctor take care of yourspecial needs.

Dr. Steinman is a professor ofmedicine at Harvard Medical Schooland the director of the dialysis unit at Beth Israel Deaconess MedicalCenter in Boston. He is also a memberof the Kidney Disease OutcomesQuality Initiative (K/DOQI) MedicalAdvisory Board.

5) Blood cholesterol and other lipids(fats) in the blood may make kidneydisease worse and cause heartdisease. This should be treated with alow fat diet and medication forcholesterol. The goal should be under200 and for triglycerides it should beunder 150. You should know yournumbers for "good" cholesterol (HDLcholesterol, which should be greaterthan 60) and "bad" cholesterol (LDLcholesterol, which should be less than120), and what they mean.

6) Blood sugar – If you have diabetes(also known as sugar diabetes), it isimportant for your blood sugar to beas close to normal as possible. Thisusually means sticking to a strict diet,controlling your weight and takingpills or using insulin. You need towork closely with your health careteam to help make sure your bloodsugar is not too low or too high.Diabetes is the most common cause ofkidney failure and early treatmentcan slow down the progress of kidneydisease and help avoid eye diseaseand nerve complications, which canresult from diabetes.

1) Bone disease – Calcium andphosphorous are minerals found inthe body. The kidney helps keep levelsnormal and bones strong. The rightdiet and medicine can keep the levelsin normal range and decrease thebone disease that can happen withkidney failure.

2) Acid - As kidneys fail, acid madeby the body and that comes from foodis not passed in the urine. Theincrease in acid levels, calledmetabolic acidosis, can affect yourheart and appetite and make bonedisease worse. Treatment with bicar-bonate can make acid levels normal.

3) Nutrition – Malnutrition orundernourishment typically occurswhen kidney function falls below 25percent of normal. Eating the rightfoods can help stop major problems

FF

Your kidney disease might get worseeven with good care and the rightmedicines. Although the treatmentcan not always stop kidney failure, itis important to know that treatmentmay slow the kidney disease anddelay the need for dialysis ortransplantation.

COMPLICATIONS OF POORKIDNEY FUNCTION

WHEN KIDNEYS FAIL


4

According to the recentNational Kidney Foundation(NKF) Kidney Disease

Outcomes Quality Initiative (K/DOQI)Chronic Kidney Disease (CKD)Workgroup, over 13-15 millionAmericans have reduced kidneyfunction and over eight million ofthese have CKD. The most importanthealth risk for those with CKD is thedevelopment of kidney failure andlikely progression to the need fordialysis. This is despite the fact thatCKD itself is much more commonthan kidney failure and has a muchgreater impact on the health and wellbeing of more Americans. To addressthis problem, the K/DOQI CKDWorkgroup has written guidelinesidentifying the risks associated withthe loss of kidney function, whichinclude the risks of poor nutrition.

PROTEIN ENERGY MALNUTRITION

Protein Energy Malnutritiondevelops in children and adults whoseintake of protein and calories is notadequate for the body's needs, andthose who have trouble absorbingvital nutrients or converting them toenergy needed for healthy tissuegrowth and organ function. In fact oneof the hallmarks of kidney failure isanorexia, or loss of appetite and lowfood intake. Research shows thatwhen your glomerular filtration rate,or GFR, (a measurement of kidneyfunction which can be calculated froma blood test)—drops below 60 ml/min,you may begin to eat less food. Whythis occurs is unclear—perhaps it isyour body’s way of limiting thebuildup of toxic waste products thatcome from food. Or maybe you eatless because you have other medicalproblems that make you feel ill, suchas diabetes, heart disease or infec-tions. Whatever the reason, the out-come of eating fewer calories and lessprotein is a higher risk of developingprotein energy malnutrition.

As food intake declines, you mayshow signs of malnutrition. Thesemay include less body fat and muscle,usually seen as a drop in your weightor less tissue around your eyes,shoulders, hands and arms. Bloodtests can show that your albumin,

prealbumin and transferrin levels arelower than normal. These are proteinsubstances in the blood, which buildhealthy tissues, carry iron and alsomeasure nutrition health. Foodrecords can show that you are eatingless protein and fewer calories thanyou need and that your intake of fats,carbohydrates, minerals and vitaminsis out of balance.

When you have protein energymalnutrition you have a greaterchance of getting ill, being hospital-ized and having health complications,such as fatigue, anemia and infec-tions. Studies also show that whenyou have protein energy malnutritionyou may also have more inflammation(your body tissue’s response to injury)than when you are well nourished.This may be related to heart disease.

NUTRITION ASSESSMENT

The K/DOQI CKD Workgrouprecommends that people with CKDreceive a nutrition assessment aftertheir GFR falls below 60 ml/min.This assessment may include areferral to a dietitian who has specialtraining in nutrition in kidneydiseases. Part of the nutritionassessment should include measuringyour weight and comparing it tostandard healthy weight tables. Your blood tests should include ameasurement of albumin, which is a marker of nutrition and protein health. The nutritionassessment should also include areview of your usual food intake or a dietary interview, to measure the amount of calories and protein

you eat and compare it to yourrecommended level.

The renal dietitian will make dietrecommendations based on yournutrition assessment. It is mostimportant for people with CKD to eatenough calories to stay at a healthyweight. This may mean you need toadd extra foods to your meal plan oradjust the type of foods you eat,depending on your weight goals. Inaddition, the dietitian will determineyour protein needs, based on yourlevel of kidney function and overallhealth. It is important that you eatjust the right amount of protein toprevent malnutrition but also to limittoxic wastes, which can affect yourappetite. Besides calories and protein,the renal dietitian can address otherareas of your diet that may needadjustment to maintain good health,such as the type and amount of fats,minerals and vitamins you eat. If youhave diabetes, the dietitian willrecommend the best meal plan foryou to maintain healthy blood sugarlevels and may refer you to a diabeteseducator for follow-up.

If you have CKD you are at risk forprogression to kidney failure, butthere are still steps you can take toregain and maintain your health. It isimportant that you learn as much asyou can about your kidney disease,stay in close contact with your health care team and take an activerole in your care. Learning about the nutrition risks of CKD andworking with a renal dietitian to plan healthy meals can be your first step in preventing protein energy malnutrition.

REFERENCENational Kidney Foundation K/DOQI Clinical

Practice Guidelines for Chronic KidneyDisease: Evaluation, Classification andStratification. Am J Kid Dis. 39(2):S17-S31, 2002 Suppl 1

Kathy Schiro Harvey has been apracticing renal dietitian for over 22years and is a member of the NKFK/DOQI Chronic Kidney Disease Work-group. Kathy is chief renal dietitian atPuget Sound Kidney Centers inMountlake Terrace, Washington.

FF

Good NutritionThe Importance of Healthy Eating

in Chronic Kidney DiseaseBy Kathy Schiro Harvey, MS, RD, CSR

5


Starting dialysis changes yourlife. Suddenly, everything youdo has some effect on how you

feel. There are many new restrictionsin your life, what you eat, where yougo, what time you have to do things.Many people stop doing activities theyenjoy when they start dialysis, andoften, even when they feel better, theyforget to start doing the things thatthey like to do. Once your health isstable on dialysis, it is important toremember that your life can beginagain, and there are things you can dophysically and emotionally to feelbetter. Exercise is an activity that youcan return to when you are stable ondialysis. Many folks on dialysis knowthat they want to start exercising, butthey are not sure how to begin. Justlike the diet you follow on dialysis,there are some do’s and don’ts withexercising. This article will tell youwhat is known so far about exerciseand dialysis and will give you someguidelines for starting your ownexercise program.

Doctors and health care providersoften now ask questions about howmuch or how little people on dialysisexercise. There are many tests thathave been developed to determine howwell your heart and lungs work and toassess the strength in your arms andlegs. When people with chronic kidneydisease are tested, their fitness scoresare lower than those who do not havekidney disease. Low fitness scores alsosuggest that people with kidneydisease may have a much harder timedoing basic activities such as cooking,cleaning and other things that we all

F I T N E S S

Exercise to Help You Manage Your Health By Tiffany Shubert, MS, PT

Remember to check with your physician before embarking on a new exercise regimen.

do every day. They might find it harderto get out for social and recreationalactivities. What is even worse is thatlow fitness performance scores havebeen related to greater chances ofdeath. People with chronic kidneydisease become inactive and weak formany reasons: anemia, sickness and getting overloaded with fluid. There aremany challenges for dialysis patientsto starting an exercise program, but itis known that people who becomeinactive experience even moreproblems with other parts of theirbodies, including muscles, heart,lungs, digestion and nervous system.

We do know that people of all agesbenefit from regular exercise, and evena very small increase in activity canresult in better health and quality oflife. Researchers are learning aboutpeople on dialysis and discovering thatthey can exercise their heart (aerobic)and their muscles (strength training)to improve their physical performance,to help manage depression and tomake daily activities easier toaccomplish. Common sense leads oneto think that people with chronickidney disease who exercise will havea better chance of living longer,healthier lives.

The first step is usually the hardest.People are afraid of starting a newactivity. You don’t know how it mayfeel: it might be too hard, it might notfeel good and you might sweat! Thechecklist below will give you informa-tion so that starting an exercise prog-ram may not be so scary. Fill it out.Remember you are doing this for yourhealth, and go for it!

❑ Decide what you would like todo: walk, cycle, dance or go up yourstairs. Maybe your unit offers aprogram like stationary cycling orstrength training either before orduring dialysis.

I would like to ______________________

❑ Talk to your doctor. The biggestrisk for those with chronic kidneydisease is a problem with your heart.Heart disease often accompanieskidney failure. Most problems thataffect your heart, such as high bloodpressure, blood sugar managementand high cholesterol, improve withexercise. But your doctor will have

guidelines for how much you cansafely do.

My doctor has told me I can safely(fill in the activity) ____________________for _______ minutes.

❑ Choose which days and how longyou would like to exercise – and beconsistent.

I want to exercise 3 days a week: _______________, ______________, _______________.

I want to exercise for______ minutes/session.

❑ Ask for your doctor to arrangefor you to talk with a physical ther-apist or an exercise physiologistabout a program that will be safe foryour muscles. If you start out slowly,you should have only minor musclesoreness. Another risk if you are ondialysis is injury to bones or joints.You should be able to protect yourbody from injury by starting out slow.

I am meeting with a physical therapist/exercise physiologist on___________ to talk about a program.

All exercise programs should have along warm-up and cool-down period,which will also protect you frominjury.

A modest increase in daily activityand a minimum of 30 minutes ofaerobic exercise three times a weekwill result in better health. However,try not to push yourself, know yourown limits.

The goal is to have fun! It is also toprevent muscle weakness and getstronger.

I will smile and laugh while exercising!!!!

If you have pain or discomfortduring or after exercise, stop and talk to your doctor. Do not start againuntil you feel okay – remember, youare in control!

1. Warm Up: Time for your heart andmuscles to wake up for exercise!

continued on page 16

6


K/DOQI: What Is It and Why Do We Need It?By L. G. Hunsicker, MD

Because there are differencesin the way that kidneydoctors take care of those on

dialysis around the United States, in1997 the National Kidney Foundation(NKF) began a program, the DialysisOutcomes Quality Initiative, or DOQI,to recommend to kidney doctors theways of taking care of people ondialysis that had the best results forthe patients. This has been verysuccessful over the past five years.For example, the chance that a personon dialysis will die became muchlower as kidney doctors started tofollow these "best practice" or "bestways of doing things" guidelines. Nowthe NKF has started another majornew program, the Kidney DiseaseOutcomes Quality Initiative, orK/DOQI. What is this all about? Whydo we need a new program like this?

Since 1997, we have learned thatkidney disease is very common.Studies have shown that one in everynine Americans has kidney disease. Inaddition, another one in fiveAmericans is at risk for kidney diseasebecause of high blood pressure,diabetes, older age or their race orethnic background. Most of the peoplewith kidney disease or those at risk fordeveloping kidney disease don’t evenknow it. People with kidney diseasenot only have a greater chance ofkidney failure requiring dialysis or akidney transplant; they are also at amuch higher risk for heart attacks,heart failure and strokes. Over thepast 10 years we have learned ofseveral ways to diagnose and treat

people to decrease the chance ofdeveloping kidney disease or to slowits progress, and we have learned howto lower the risks of heart disease andstrokes, but all health care providersare not yet using these methods.Clearly, it is important for people toknow about kidney disease and thatthere are ways to prevent it or slow itsprogress and to treat it properly at itsearliest stages.

The large numbers of Americans atrisk make it impossible for all of themto see a kidney doctor about it.Therefore, the first new clinicalpractice guidelines developed underK/DOQI, Chronic Kidney Disease:Evaluation, Classification, andStratification—a program designed tohelp all health care providersrecognize and diagnose kidney diseaseearly and to provide the best care forpeople as early as possible whentreatment has the most benefit—isnow available. These K/DOQIguidelines say that two simple testsshould be done on people, along witha medical history and measurement ofblood pressure. The first of these testsrequires only a sample of urine to lookfor proteinuria, the second requiresonly a single simple blood test tocheck your serum creatine level.

With this information, the doctorcan determine if a person has kidneydisease, and if so, identify which offive categories of seriousness theindividual fits into: kidney diseasepresent but kidney function normal;kidney disease present and kidneyfunction decreased slightly,moderately, or severely; or kidneyfailure requiring dialysis ortransplantation. In addition, theseK/DOQI guidelines suggest, for eachlevel of kidney disease, a series ofother tests and treatments thatdoctors and patients should considerto slow the progress of kidney disease,to prevent some of the complicationsof kidney disease that begin to appearvery early and to lower the risks ofheart disease and stroke.

These guidelines were published inFebruary 2002 in the AmericanJournal of Kidney Diseases, presented

at medical meetings and madeavailable over the Internet so that allhealth care workers can becomefamiliar with them and use them asneeded to take care of their patients.The NKF wants all health careprofessionals to give appropriate careto those people with chronic kidneydisease, to start their patients’treatments early and to know when to send someone to a kidney disease doctor.

TheseK/DOQIguidelines arethe first part ofa four-part NKF planto attack theproblem ofchronic kidneydisease. Theother parts ofthe plan are 2) a publicrelationscampaign to reach Americans atincreased risk of kidney disease toencourage them to be tested routinely,3) the Kidney Early EvaluationProgram (KEEP) aimed at identifyingdirectly those with chronic kidneydisease or at high risk of developing itand referring them to their doctorsand 4) an expanded educationprogram to tell health careprofessionals about these K/DOQIguidelines. We believe that theK/DOQI guidelines, together with theother parts of this four part plan, willresult in improvements in the care forthose individuals with chronic kidneydisease that are as great as those that resulted from the DOQI programthat came before K/DOQI. And that is good news for all people with kidney disease!

Dr. Hunsicker is a professor ofinternal medicine at the University of Iowa College of Medicine where he is also the medical director of organ transplantation.

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“Studies have shown that one in every nineAmericans has kidneydisease. In addition,another one in five

Americans are at risk for kidney disease

because of high bloodpressure, diabetes, older

age or their race or ethnic background.”


7

Iauthored the Patient and FamilyCouncil article this issue becausethe topic of chronic kidney

disease (CKD) really hits close tohome for me. The type of support Ifind myself providing to others tolearn to live with enthusiasm, eventhough their lives may be changing, ispertinent for those with kidneydisease regardless of the degree ofseverity. Sharing ideas and feelingshelps individuals to fully realize thattheir lives are still meaningful evenafter being diagnosed with CKD. Dailyschedules may have to change andpriorities will most likely have to berevised differently than before sinceCKD can be demanding, but life andthe spirit to live it well are still worthyof your best personal effort.

You may be surprised to learn thatin the 1960’s the treatment of dialysisfor kidney failure was not funded byany government programs. There wasno easy access to dialysis machines soeveryone who needed dialysis couldnot be dialyzed. To deal with theproblem of having too many peoplewho needed dialysis to live and toofew machines and staff to dialyzethem, selection committees wereformed to decide who would be"suitable" to dialyze. Most committeesused a person’s age, intelligence,potential to be employed, finances, taxpaying status, ability to cooperatewith the treatment, a psychiatricevaluation and a person’s medicalcondition to help them determine whoto accept. Typically excluded werethose who had other major illnessessuch as diabetes, which is now themost common cause of kidney failure.

You should realize that the committeethat made this decision of who wouldlive and die did so based partly upontheir perception of the patients' valueand worth to society. Typically thosepeople selected for dialysis were underage 45, thought to be stable physicallyand mentally and employed.1 Ratherthan shout when the committee choseto grant dialysis treatment to thepatient with kidney disease failure,the tears that were seen were oftenfrom the joy of realizing that deathdue to a lack of dialysis was not forthcoming.

It seems primitive today. How timeshave changed in a mere threedecades! But history lessons shouldnever be forgotten.

Now compare the selectioncommittee process to the currentsituation and try to imagine: Why dosome today view dialysis as a deathsentence when patients who needdialysis treatment are provided theopportunity to live well? Thesethoughts, while understandable, aresometimes uninformed and mis-guided. CKD is not a death sentence.Nor should dialysis treatment withany modality be considered anythingless than the best and most effectiveway to adapt and compromise tochanging conditions of simply growingolder and living longer.

CKD may create despair, but if youseek to discover the good in thediagnosis, the despair could bereplaced with gratitude by under-standing just how far dialysis andsupport treatment for kidney failurehave come in such a short time. Here’s to another 30 years of positivechanges in this medical field. We’vecome a long way!

Life can still be good. Attitude playsan important role in how you judgeyour current condition, your physicalwell-being and yes, even how youinteract in daily events. To besuccessful and enjoy the oppor-tunities dialysis has to offer you bygiving you life, remember to be eager

PATIENT AND FAMILY CORNER

Chronic Kidney Disease—Is It a Death Sentence?By Dale Ester

to manage your CKD as carefully aspossible, control your diet and fluidrestrictions (when needed), and listenclosely to the health care team.Success is all about you!

Dialysis keeps you alive. If youconsider CKD and dialysis as a deathsentence diagnosis, then any lack ofcontrol will diminish the personalimprovement you could achieve. Nolonger must a committee render adecision based upon your value tosociety and family because almosteveryone now is treated as worthy andentitled to treatment as part of being aa legal resident of the United States.Be proud of your heritage!

How you react with CKD and itstreatment options is up to you. Life is what you dream of it—make it great!

1. Price C: Is It Time Again for PatientSelection Criteria? NephrologyNews & Issues, February 2002, pp.18-20. F

F

“It seems primitive

today. How times have

changed in a mere

three decades! But

history lessons should

never be forgotten.”

“How you react with

CKD and its treatment

options is up to you.

Life is what you dream

of it—make it great!”

Make Your Voice Heard

re you a patient, family member ora friend of someone affected by kidney disease or transplantation?

o you wish that you could dosomething to make lives better forkidney patients, transplant candidatesand transplant recipients?

Join the NKF Legislative VolunteerNetwork and help the National KidneyFoundation shape health policy

For details call 800-889-9559

A

D


8

Living Long and Well with Chronic Kidney Disease: Guideline 12:

Functioning and Well-BeingBy Beth Witten, MSW, ACSW, LSCW

The National KidneyFoundation (NKF) recentlyfinished a two-year project

that resulted in published guidelinesfor chronic kidney disease (CKD) fordoctors and other health profes-sionals. These guidelines are nowavailable to help doctors identify thosewho are at increased risk of develop-ing kidney disease, and treat thosewith CKD sooner.

The guidelines answer thesequestions:• What are the stages of kidney

disease?• How many people fit in each stage

of kidney disease?• How does aging affect kidney

function?• What makes people at higher risk

for developing kidney disease?• What is the best way to find out if

the kidneys are damaged?• How can doctors identify and treat

those who have CKD sooner? • How can doctors treat such

complications of CKD in adults ashigh blood pressure, anemia, poornutrition, bone disease, nervedamage and problems withphysical, emotional, social orvocational functioning?

• How can we educate patients,professionals and the public aboutCKD to prevent more people fromdeveloping it or to keep those withCKD from getting worse?

Doctors and staff want to knowwhat causes CKD, how to diagnose it,what stage of kidney disease a personis in and what problems developbecause of it. However, someone withkidney disease may have differentquestions. How will kidney diseaseaffect my quality of life over time?What symptoms might I look for andwhen? As I have more symptoms, howwill I feel about my health and life?Will I be able to work, keep house,enjoy leisure activities and visit withmy friends and family? How willkidney disease affect my mood? TheNKF wanted to answer all of thesequestions in its new guidelines.Guideline 12—Association of Level of GFR with Indices of Functioning and

Well-Being—focuses on changes inpatients’ quality of life over the courseof kidney disease.

Many researchers have studied howkidney failure affects functioning andwell-being. Only a few researchershave studied how earlier stages ofkidney disease affect functioning andwell-being. In the past, researchersasked health care professionals howthey believed patients functioned andcoped with kidney disease. Whenresearchers found that patients ratedthemselves differently from how theseprofessionals rated them, researchersbegan to put more weight on whatpatients reported.

This guideline is based on whatresearchers learned from patients withCKD about how worsening kidneyfunction affects functioning and well-being. It focuses on:• Symptoms and what the person

thinks about his or her health• Physical functioning• Depression and mental health• Work, home management and

recreation• Social functioning.

In study after study, as kidneyfunction worsened, patients reportedmore problems in all of these areas.Patients reported changes long beforethey had kidney failure.

Other factors besides worseningkidney disease can affect functioningand well-being. Income, education and

health conditions, such as diabetes,hypertension, anemia, bone diseaseand neuropathy (nerve damage), canalso harm functioning and well-being.Doctors need to know who is at risk,treat other health conditions early andhelp those who experience problemswith functioning and well-beingsooner. By knowing that theseproblems happen earlier than theymight have expected in the course ofkidney disease, they can find andcorrect problems sooner.

This guideline suggests that doctorsask each patient to complete one ofthe recommended surveys to find outfrom the patient’s perspective howkidney disease is affecting his or herfunctioning and well-being. Using thisinformation, health care professionalswill learn what problems develop,when they develop and whattreatments help and which do not.The goal of this guideline is to helpdoctors and other care givers identifyproblems earlier, treat them moreeffectively and help patients livehappier, healthier, more active andmore productive lives. If nephrologistsand other physicians use theseguidelines, it will aid the NationalKidney Foundation in achieving itsvision of Making Lives Better.

REFERENCENational Kidney Foundation. K/DOQI

Clinical Practice Guidelines forChronic Kidney Disease:Evaluation, Classification andStratification. Am J Kidney Dis39:S1-S266, 2002 (suppl 1).

Beth Witten, a clinical social worker,served on the K/DOQI Chronic KidneyDisease Evaluation, Classification andStratification work group and wrote theguideline on functioning and well-being. With over 20 years ofnephrology experience, she establishedWitten and Associates, LLC, andprovides educational and rehabilitationconsulting to clients including theMissouri Kidney Program and the LifeOptions Rehabilitation Program.

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The goal of thisguideline is to help

doctors and other caregivers identify

problems earlier, treatthem more effectivelyand help patients live

happier, healthier,more active and more

productive lives.

9


T h e M o r eY O U K N O W

Serving the needs of patientsand families affected by kidneydisease has always come first

for the National Kidney Foundation(NKF). Through our many educationaland supportive materials andprograms—like KEEP (Kidney EarlyEvaluation Program, a screeningprogram to test those at greater riskfor kidney disease), People Like Us,Live! (an interactive patient and familyeducation program about kidneydisease) and RISE (Rehabilitation,Information, Support andEmpowerment, a rehabilitationprogram to help those with kidneydisease return to meaningfulactivity)—we have been able toaccomplish this successfully. As wegrow in our knowledge, we continue tolearn about the best ways to offerprograms and services to ensure thatthe needs of people affected by kidneydisease are being met.

With the development of NKF’sK/DOQI (Kidney Disease OutcomesQuality Initiative) and the creation ofthe Clinical Practice Guidelines forChronic Kidney Disease (CKD), we nowhave more information about allaspects of kidney disease. We knowthat CKD is a worldwide public healthproblem. We also know that the rate ofkidney failure is rising and that thereis an even higher rate of CKD thanearlier reports have shown. We have

What’s New at NKF…?learned that early kidney disease canbe detected through special tests and that treatment in the earlierstages can slow the progressiontoward kidney failure. And, we nowknow that there are five stages ofkidney disease.

What does all of this informationabout kidney disease mean for youand your family? It means thateveryone—including patients andprofessionals—is better able than everbefore to tackle the challenge ofidentifying and treating CKD, and theNKF is better prepared to educate andsupport both patients and profes-sionals. To help us meet the challengeof educating even greater numbers ofpeople, including those who are atincreased risk for kidney disease aswell as those who have CKD, the NKFhas created the K/DOQI LearningSystem or KLSTM.

KLS means that the NKF will haveinformation on chronic kidney diseaseto support and educate you no matterhow mild or severe your kidneydisease is. For example, you might bein the very early stages of chronickidney disease and having problemswith high blood pressure or anemia.Learning about how you can bestmanage these problems to help slowthe progression of your disease wouldbe of interest to you. The NKF will

have information and programs tohelp educate you and your family andanswer your questions about themany issues you face. Suppose youhave an increased risk for developingkidney disease because your closerelative has kidney failure or you havediabetes. Or, suppose you are worriedabout a loved one who has beendiagnosed with chronic kidneydisease. KLS programs and materialsare aimed at helping all individuals atany stage of kidney disease and thosewho are at increased risk for develop-ing kidney disease (these may be yourfamily members). It is the NKF’s goalto have materials targeted at thespecific stages of kidney disease sothat a patient can easily locate infor-mation specific to his or her stage.Most important of all, understandingyour disease and knowing how tomanage it will help you stay healthyand get the proper care through earlydetection and treatment. Even if yourkidney disease does progress, you willhave the information you need tomake the best treatment choices foryou and your family.

Other K/DOQI clinical practiceguidelines are currently underdevelopment. For more informationabout K/DOQI and KLS, contact theNKF at 1-800-622-9010 or visit ourWeb sites at www.kidney.org orwww.kdoqi.org

What is your stage of kidney disease?

Stage Description Glomerular Filtration RateAt increased Risk factors for kidney (GFR) More than 90risk disease (e.g., diabetes, high

blood pressure, family history,older age, etc.)

1 Kidney damage (protein More than 90in the urine) and normal filtration rate

2 Kidney damage and 60 to 89mild decrease in filtration rate

3 Moderate decrease 30 to 59in filtration rate

4 Severe decrease in 15 to 29filtration rate

5 Kidney failure Less than 15(dialysis or kidney transplant needed)

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http://www.kdoqi.org


10

The JournalBy Olive Goodman

Iread an article by Stacy Colona in the Ladies HomeJournal that keeping a journal and writing about adifficult or painful event in your life accelerates the

coping process and can improve your mental and physicalhealth.

I’ve found this to be true. Just last June I had to go onkidney dialysis. This was a shocker to my system! I neverdreamed I had this trouble. My dialysis is a three-hourtreatment regime, three days a week. Now how muchtraveling can I do? None. It is so confining. It leaves me tiredand needing a nap. That’s something I never did—nap inthe daytime. On the machine I’d have cramps, get sick andmy blood pressure went way down and I’d have to lay flat,which was frustrating.

So after I started writing in the journal about howdifficult it is, I find it is easier. I’ve had six treatments withno trouble. I’ve been warmer and not asking the nurse,"How much longer?" I now watch TV, listen to music, knitand sometimes nap. I have found that if I want I canvacation and have treatments there. My center will makeappointments for me. Isn’t that grand? I plan to go toBranson, Missouri next summer.

There are 16 other people on dialysis with me and I amnow involved with them. They are a special part of my days.This gives me a positive attitude instead of frustration overmy own feelings. I sometimes ride senior transportationwith two others, and we visit as we travel back and forth.That is a bonus.

I am springing back. I look forward to each day again. Isew at home on off days. I’m glad to be adjusted andcheerful again. My nurses are wonderful. Also, my kidneydoctor, my social worker and my family and friends are sohelpful. So again, life is good. The treatments keep me alive.I follow the rules and keep a journal. I recommend it. Ithink it will be a help.

Olive Goodman was a dialysis patient from Illinois. Shepassed away on September 4, 2001 at age 82.

Dear Editor:

In your summer 2001 issue of Family Focus,the Renal Community’s Newspaper, Volume 10,Number 3, page 4, there is a big headline,"Kidney Disease Caused by Chinese Herbs" abovethe article written by Marc E. DeBroe, MD, PhD.Would you please ask whoever writes theseheadlines to read the article first? On page 3 itsays "….. chemical used……20 years….notcaused kidney disease in any of these patients."On page 4 it reads "…..patients who developedkidney diseases also took…..fenfluramine anddiethylpropion….."

Of course you need to be careful what youtake! False and misleading headlines/articlesfrom an organization like you cause unnecessaryconfusion. Can we really trust what you tell us?

Sincerely,Robert Johns

Dear Mr. Johns:

Thank you for your letter. We apologize if you found this particular title misleading. Wedo our best to assure that the informationprovided in Family Focus is always accurate. Wedefinitely believe that the readership can trustwhat is printed.

Sincerely,Karren KingEditor

MAILBOX

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There are lots of reasons to donate a vehicle. Funding kidney research and patient care are only a few. Make your car a Kidney Car. Cars that save lives. For more information, call 1-800-488-CARS.


11

The National KidneyFoundation (NKF) initiallydeveloped a set of clinical

practice guidelines for taking care ofkidney dialysis patients in 1997. Thiswas called the Dialysis OutcomesQuality Initiative (DOQI). It was hopedthat these guidelines wouldstandardize dialysis procedures forpeople on dialysis. DOQI becameextremely successful, and theguidelines became widely known.

A little over two years ago, the NKFreexamined DOQI and its widespreadsuccess and decided there was a needto expand the guidelines to include allpeople with chronic kidney disease(CKD), not just those on dialysis. Theplan was to make sure that theguidelines existed for individuals withchronic kidney disease even beforedialysis needed to be started. As aresult, the Kidney Disease OutcomesQuality Initiative (K/DOQI) wascreated. A group of professionals fromall parts of the country joined togetherto complete the first new guidelinesunder K/DOQI. Pediatricians wereincluded in the workgroup to assurethat the new guidelines wereappropriate for children.

The result of this effort was tocreate a new set of guidelines forpatients with CKD called the ClinicalPractice Guidelines for Chronic KidneyDisease: Evaluation, Classification andStratification. These new guidelineshelp care givers evaluate and manageadult and pediatric patients withCKD. All of these new K/DOQIguidelines do not apply to children.However, the ones that do (guidelines1, 4, 5 and 6) should help care giverstake care of pediatric patients withchronic kidney disease.

K/DOQI Chronic Kidney Disease for Pediatric Patients:Guideline 1: Stages of Chronic Kidney DiseaseThis guideline separates the degree

of CKD in children into five stages(stage one being the most mild stageand stage five being the most severe),

based on kidney function. This ismeasured using a test called theGlomerular Filtration Rate (GFR—ameasure of your kidney function).As kidney function worsens, the GFRdecreases, and a very low GFR meansa very severe CKD. The newguidelines separate the stages ofchronic kidney disease for pediatricand adult patients.

Guideline 4: Estimation of GFRThe new guidelines say that,

"Estimates of GFR are the best overallindices of the level of kidneyfunction." Therefore, it is veryimportant that the GFR is correctlycalculated. The guidelines stress theimportance of using a formula, whichtakes into account body size. Inchildren, the formula recommended tocalculate GFR is the Schwartz orCounahan-Barrett formula. TheSchwartz formula is the most widelyused in the United States. Thisformula is based on the child’s age,height and creatinine level in theblood. Creatinine is a waste productthat is normally excreted in urine, butgets elevated in the blood whenkidney function is low. Differentformulas are used to calculate kidneyfunction for adults. It is importantthat pediatricians use the rightformula to calculate kidney functionin children, so they can know theactual level of kidney function.

Guideline 5: Assessment of ProteinuriaPeople have proteinuria when they

have increased levels of protein intheir urine. Proteinuria can be a signof early kidney damage or ofdecreased kidney function. Guideline5 provides instructions for obtaininggood samples of urine in children sothat the protein level can bemeasured correctly. It states that thebest urine sample to look for proteinis the first one of the morning (justafter the child has woken up).

Guideline 6: Additional Markers of Chronic Kidney DiseaseThis guideline lists other tests that

help to evaluate CKD in children.

Guideline 6 recommends checking theurine of pediatric patients with CKD,as well as performing special imagingstudies such as ultrasound and CTscan. This guideline also states thatchildren who have a higher chance ofhaving kidney disease should bechecked using these urine andimaging studies. Children who have ahigher risk of having kidney diseaseinclude those with hypertension,diabetes or a family history of urologicor kidney disease.

The K/DOQI Clinical PracticeGuidelines for Chronic Kidney Disease,in addition to the previouslypublished DOQI guidelines, werecreated by the NKF to help make surethat each patient receives the bestand most appropriate care. The NKFalso hopes these guidelines improvethe quality of care for both pediatricand adult patients with CKD longbefore they require dialysis ortransplantation. In addition, the newguidelines look differently at childrenand adults and will help doctorsassess and manage pediatric patientswith CKD.

In summary, there are four areas inthe new guidelines that specificallyapply to children with CKD. They arelisted below:1) The five stages of CKD are defined

for pediatric patients.2) The way to correctly calculate

kidney function in a child isdescribed.

3) The correct method of evaluatingproteinuria in a child is detailed.

4) How to evaluate a child with CKDis explained.

Katherine Barth is an under-graduate student at Johns HopkinsUniversity studying behavioral biologywith plans for medical school. Dr.Susan Furth is a pediatric nephrologistat Johns Hopkins University School ofMedicine and served on the pediatricwork group for the NKF K/DOQIClinical Practice Guidelines on ChronicKidney Disease.

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K/DOQI Chronic Kidney Disease Clinical Practice Guidelines for ChildrenBy Katherine Barth and Susan Furth, MD, PhD

12


Iam just completing my second year on dialysis andwhat a change it has been. My first year was like arocky road, getting attuned to the new venture in my

life, numerous hospital visits and reading how awesomedialysis was. Many days I was in “limbo,” not knowingwhat the next day held.

But my second year changed for the better. At the unit Ideveloped strong friendships with staff and patients whichwere refreshing and many a day encouraging. At the end ofmy first year I was fortunate enough to attend a patienteducation seminar. What an eye-opener that was! I learnedso much about improving my life on dialysis that it wasphenomenal. I learned about my diet, the foods that wereimportant to eat and those that I should stay away from.Finally, with the help of a better diet and medication, myanemia improved and I could maintain a hemoglobin levelthat made me feel alive.

When I had renewed strength, I began to feel very bored.I realized I needed to get busy. After much thought Idecided to volunteer at a senior center. They welcomed mewith open arms, and being able to help to cheer otherpeople was a blessing. What is this all about? Dialysis isnot sitting in a chair three times a week. It entails muchmore.

Here are some tips that made my second year a success.I hope they help you, too!

1. Read and inform yourself about every aspect ofdialysis. It is an everyday pursuit. Look for theposters and pamphlets in your unit. They are always

there to informyou of newliterature andseminars thatwill make youfeel morecomfortable ondialysis.

2. Watch yourdiet, watch your liquidintake and take yourmedication.

3. Be aware ofyour blood levels. Know the meaning of BUN,Creatinine and KT/V.

4. If at anytime you need help, the staff at the unit arethere for you. Also, get acquainted with your EndStage Renal Disease Networks.

5. Look at dialysis as the rising sun. It brings thesunshine into your life.

Last but not least, my faith that my health wouldimprove and my family and friends made life someaningful and beautiful.

Happy Dialysis. FF

Mariann Burkett

C A R T O O N

O

R

N

E

R Denise Perella is a dialysis patient in Waynesburg, PA.

Two Years and Pressing OnBy Mariann Burkett


13

T R A N S P L A N TRAANSP

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LA

TN

RT R A N S P L A N T

SPLANT

If you develop kidney failurevery suddenly, having noprevious knowledge of kidney

problems, you may not have achoice of what type of treatment tohave. The most important concernis to get you out of danger andpreserve your health as soon aspossible with some form ofdialysis. After dialysis begins, thenyou can be presented with theoptions for treating kidney failure:hemodialysis, either at home or ina center, peritoneal dialysis andtransplantation. As a member ofyour health care team, you need tofind out as much as possible abouteach option to help make thedecision that is the best for you.

If you have been followed by anephrologist (kidney specialistdoctor) before you need to begindialysis you have hopefully hadtime to learn about medicationsand a diet to help delay theprogression of kidney disease andthe need for these treatments. Youshould also be able to talk with anurse educator, a nutritionistand/or a social worker for moreinformation about the treatmentoptions. Talking with other peoplewho have been treated by one ofthe treatment options can be oneof the best ways to learn about itfirst-hand. If your doctor thinksthat transplantation is an optionfor you, talk with someone whohas had a transplant. The doctor,transplant nurse or social workercan arrange this.

If you decide that transplanta-tion is the treatment of choice foryou, do you have to wait until youhave started dialysis beforepursuing the option of transplan-tation? In the past, this wasusually the case, unless you had afamily member who was willing tobe tested to be a donor. Now it iscertainly possible to be trans-planted without starting dialysis.

When your doctor discusses theneed to take over your kidneyfunction with dialysis ortransplantation, and if you havedecided to pursue transplantation,ask about the possibility ofconsidering it first. Receiving a

transplant before starting dialysisis called preemptive transplanta-tion, and it is done frequently.Your doctor will refer you to atransplant center to talk with thetransplant team to find out moreabout it. If you have a relative orfriend who has expressed aninterest in being a donor,encourage that person to go withyou when you meet with the team.Most transplant teams consist of atransplant surgeon, nephrologistwho cares for transplant patients,social worker, financial specialistand a transplant nurse.

All transplant centers mustcomply with regulations to assurethat transplantation is safe, fairand accessible to all candidates.UNOS, the United Network forOrgan Sharing, is the contractedagency that oversees transplanta-tion in this country and hasdeveloped the criteria for placingpatients on the waiting list for anon-living donor kidney. Youreducation about transplantationand evaluation for a transplantcan start at any time you desire,but you cannot be placed on thewaiting list for a non-living donorkidney until your kidney functionmeets UNOS criteria. UNOS statesthat the creatinine clearance (atest that measures how muchkidney function you have left) andis done on a 24-hour urinecollection, must be 20ml/min or

less for a patient to be on the waitlist. Your doctor will discuss the results of this test which isperformed regularly on patientswith kidney failure.

As soon as you have finishedyour evaluation by the team, arefound to be a good transplantcandidate and meet the UNOScriteria, you can be placed on the(cadaveric/non-living donor)waiting list. Your place on the listis determined by points. One wayyou accumulate these points is bybeing placed on the list as soon aspossible because points are addedto your "score" for every day youhave been waiting. You also getpoints by how close your match iswith the non-living donor. Askyour transplant coordinator formore details on the point system.Again, the sooner you start yourtesting to be a transplantcandidate, usually the quicker youcan be transplanted, even beforestarting dialysis.

If you have a living donor, youmay not ever need to go on thewaiting list. You do not have tofollow the same UNOS criteria. Inother words, you can be trans-planted with a creatinine clearancea little above 20 ml/min. It alsodepends on when your doctor feelsis the best time for you. It ispossible for you and your donor tostart testing at the same time. Ifyou desire, your transplant cancertainly take place before needingdialysis because everything can betimed; that is, when you havereached the point that you need tostart some type of treatment, yourdonor is ready.

It is to your advantage toparticipate in deciding on yourtreatment options, including kidneytransplantation, with your healthcare team. Talk with your kidneydoctor and transplant team if thisoption sounds right for you.

� Family Focus is available on the Web. To findthis issue or back issues of the newspaper, go to

www.kidney.org/patients/backissues.cfm

The Timing of TransplantationBy Linda Harte, RN, BSN, MA, CNN, CCTC

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http://www.kidney.org/patients/backissues.cfm

14


Knowledge is PowerBy Dolph Chianchiano, JD, MPA

The National KidneyFoundation (NKF) isconvinced that individuals

approaching kidney failure need moreinformation about treatments forkidney disease and deserve to havethat information early in the course oftheir illness. Patients have the right tomake informed decisions about theirhealth care, but often are not giventhe tools to make such decisions.Therefore, the NKF has been workingwith Congressman Philip Crane (R. IL)to create a new Medicare benefit thatwould pay for pre-dialysis education.This coverage would be in addition tothe nutrition counseling benefit thatthe Medicare, Medicaid and SCHIP*Benefits Improvement and ProtectionAct (BIPA) provided for pre-dialysispatients in December 2000.

Representative Crane introduced theKidney Disease Educational BenefitsAct of 2002, H. R. 3770, on February14, 2002, and is currently callingupon other members of Congress tojoin him as co-sponsors of this bill.When enacted, this legislation woulddirect Medicare to pay for sixeducation sessions, provided by aqualified social worker, nurse or othermember of the kidney health careteam. These can be either groupsessions or one-on-one appointments.The legislation does not specify wherethe education should be conducted.The sessions could take place in adoctor’s office, a private social work ornursing practice office, a dialysisclinic or at an NKF Affiliate office. It isimportant to understand that thislegislative proposal would not directlybenefit every pre-dialysis patient. Inorder to qualify for this coverage, thepatient would have to be entitled toMedicare by either being over 65 orreceiving Social Security DisabilityIncome payments for 24 months. Onthe other hand, there is reason tobelieve that other insurers will followthe lead of Medicare in providing thisbenefit after it is enacted.

Using the NKF’s comprehensivePeople Like Us , Live!™ (PLUL!)program as a guide for qualityeducation about kidney disease, this instruction should include the following:

1. Overview of kidney function,including an explanation of thecomplications associated with adecline in kidney function (such ashigh blood pressure, anemia and bonedisease) and available treatments forthose complications, both before andafter starting dialysis or receiving atransplant.

2. Description of treatmentalternatives for kidney failure,detailing the advantages anddisadvantages of each and the role ofthe patient and family in connectionwith each type of therapy: A) Hemodialysis (in-center, in-center

selfcare, daily dialysis and homehemodialysis)

B) Peritoneal Dialysis (inclusive ofcontinuous cycling peritonealdialysis)

C) Transplantation (especially theoption of living organ donation).

3. Pros and cons of vascular accessoptions and the value of earlyplanning for and placement ofvascular access.

4. Review of financial topics, suchas the role of employer-based healthinsurance that covers the patient orhis or her spouse, Medicare, Medicaid,Medigap insurance and state kidneyprograms.

5. Psychosocial issues associatedwith chronic kidney disease, includingunderstanding the emotional impactof the disease on the patient andfamily members and how to accesssupport networks.

Research indicates that people whohave participated in a comprehensivepre-dialysis education program areless likely to be hospitalized, are morelikely to take an active role in theirhealth care, have decreased anxietyand a greater sense of control thanthose who have not had theopportunity for such instruction.Therefore pre-dialysis educationshould improve quality of life andresult in cost savings for patients andtheir families, as well as reduce costs

for the health care system. Inaddition, many People Like Us, Live!participants have told us that theirtreatment preferences changed as aresult of what they learned duringthat educational program.

The content of pre-dialysiseducation programs must beextensive, well-rounded and unbiasedand the instructors must be qualifiedto provide this service. For thatreason, H.R. 3770 would require thatminimum standards for theseprograms be established through afederal regulatory process.

If you would like to join Represent-ative Crane and the National KidneyFoundation Office of Scientific andPublic Policy in recruiting co-sponsorsfor H. R. 3770, please call (800) 889-9559, to sign up as a legislativeadvocate. Since Senator BlancheLincoln (D. AR) is planning tointroduce the Kidney DiseaseEducational Benefits Act of 2002 inthe U. S. Senate, we will also needyour help in getting your Senators toendorse this legislation.

Dolph Chianchiano, JD, MPA, is theNational Kidney Foundation’s directorof scientific and public policy.

* State Children’s Health Insurance Program

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“It is important to

understand that this

legislative proposal would

not directly benefit every

pre-dialysis patient.”

“The content of pre-

dialysis education

programs must be

extensive, well-rounded

and unbiased and the

instructors must be

qualified to provide

this service. ”

15


P O E T R YCORNER

Dialysis ThoughtsBy Marcia Vandervort

Here I sit in my favorite chair,Nothing on my mind, with an empty stare.Enjoying the activity around me,Lots going on for all to see.

Another chance to see a beautiful day,Praises and wishes for me to say.Spirit and joy within me,Keeping strong thoughts is the key.

I could complain about things to you,Complaining is not what I want to do.After all things could be worse,It does no good to scream or curse.

Counting my blessings is a good way,To make success of a long day.Maturing gracefully in thought and mind,Trying not to leave good friends behind.

Energy By John Taylor

People –Just want to be happyEven while on dialysisSharing special momentsTogether –Making plans for distantJourneys –Where rainbows are found.Precious times –With loving Grandchildren;Fabulous meals with wife/Husband at your "FavoriteCafé."Some days –There are no words,And you are my friend who feelsAlone –Praying –To the voice within; to knowOneness –The Greatness of Love…

Since I came to work as a new social workerIn a little dialysis unit on the prairie

My heroes have always been dialysis patients.And yes, some are cowboys.

They travel for hours every other day to treatmentTo be hooked to the machine for a couple moreThen ride home for another few.

Exhaustion, fatigue and a bumpy ride on thereservation roadsCannot wipe away the dignity and bravery in theface of ESRD.

Humor is their secret weapon.Laughter is the best medicine in our unit.

Our patients are the first to tell the newest jokeAnd laugh heartilyOut loud.

The best of times and the worst of timesAll find their way to our dialysis unit.

And when the staff feels tired and burnt out,It just takes the gratitude of a patient or familymemberTo rev’ up our engines again.

Some people work and pray for money and power.I pray for kidneysAnd work for wellness.

HeroesBy Paula Snow

Dedicated to the patients of the Three Affiliated Tribes Kidney Dialysis Unit on the Fort Berthold Indian Reservation in North Dakota.

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Plan on 10-15 minutes of deep breathing, gentlymoving your arms and legs, stretching your muscles.

2. Exercise: Pick something that you like to do – if itis walking, choose a distance that you think you cando, and do half of that distance. For example, if youknow you can walk two blocks, plan on walking oneblock, and taking a rest. If you feel out of breath oryou can’t talk, you need to take a rest until yourbreathing goes back to normal and you can talk. Ifyou can talk after one block, keep going for thesecond block. If you want to dance, put on somemusic and dance for one short song. Check yourself.If you can easily carry on a conversation, you areexercising within your limits. If you are out of breath,slow down.

3. Strength training: After exercising your heartyou can do a few exercises to start increasing thestrength in your arms and legs. Try standing up andsitting down from a chair five-10 times. If it is easy,try not to use your arms to help.

4. Cool Down: Give yourself 10-15 minutes again ofdeep breathing and getting your breathing back tonormal. Also, during your cool down, focus onstretching your muscles and gently moving yourarms and legs.

Try doing this program for the next few months. Ifyou feel strong, gradually increase your exercise timeby two minutes per week. Remember to go slowly andcarefully.

GO FOR IT!

Resources:A great resource for exercise training is the

National Institute on Aging’s free Exercise Guide. Call(800) 222-2225 for a copy.

See the NKF’s brochure Staying Fit with KidneyDisease. To order call (800) 622-9010 or [email protected]

Exercise to Help You …continued from page 5

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June 25th - June 29th, 2002

The U.S. Transplant Games are a four-day athleticcompetition taking place at Disney’s Wide World of Sports™ Complex, Lake Buena Vista, Florida.

They consist of 12 sports and 41 events forrecipients of organ transplants—heart, liver, kidney, lung, and pancreas. Allogeneic bone

marrow recipients are also eligible to participate.

For more information go towww.transplantgames.org

or call the National Kidney Foundation at (800) 622-9010.

photos © Disney

NON-PROFIT ORG.U.S. POSTAGE

PAIDNew York, NY

Permit No. 532730 East 33rd StreetNew York, NY 10016

http://www.transplantgames.org

mailto:[email protected]

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What You Should Know and Do About Chronic Kidney Disease · What You Should Know and Do About Kidney Disease continued from page 1 high salt foods. Work with a dietitian to plan a