A MESSAGE FOR FAMILIES

An important messagefor family members ofpeople with chronic kid-ney disease.

—Pages 8

Gary Klaz, who onceweighed 500 pounds,talks about how exerciseand dialysis fit into hisregular schedule.

—Page 7

Our readers weigh inwith their opinions ongenetic testing.

—Page 10

Finding Kidney Disease EarlyBy Allan Collins, MD

At the present time, thereare about 430,000 people withkidney failure treated witheither dialysis or a functioningkidney transplant. One hun-dred thousand individuals starttreatment for kidney failureeach year. In addition, about 20million individuals have mild toadvanced chronic kidney dis-ease (CKD) and 8 million ofthose have less than 60 percentof kidney function remaining.Seventy-one percent of thosepeople who start dialysis haveeither diabetes or hypertension(high blood pressure). Thesenumbers may be startling, but

we need to be aware that CKDhas reached epidemic propor-tions, and those individualswho have hypertension and dia-betes or a family member withhypertension, diabetes or kid-ney disease, are at increasedrisk for developing CKD.Kidney disease can and shouldbe identified and treated asearly as possible.

The National KidneyFoundation (NKF) has devel-oped CKD education programsto encourage those at high riskfor kidney disease to seek med-ical attention. Targeting indi-viduals known to have diabetes,

high blood pressure or a familyhistory of diabetes, high bloodpressure and/or kidney disease,the NKF’s Kidney EarlyEvaluation Program (KEEP) isthe most widely known of theseefforts to identify and treatCKD in its early stages. TheKEEP program is a communi-ty-based program delivered bylocal NKF affiliates. KEEP pro-vides free blood pressure andweight measurements, andblood and urine tests for signsof diabetes and kidney disease.The program has now reachedmore than 35,000 people. Thefirst KEEP Annual DataReport, published in theAmerican Journal of Kidney

TRADITIONALLY, KIDNEY DISEASE HAS BEEN MOSTOFTEN recognized in those individuals who reach dialysisor receive a kidney transplant.

This publication is a part of the National Kidney Foundation’s Kidney Learning System (KLS)™

and is made possible through an educational grant from .

Inside this issue:

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K I D N E Y D I S E A S E : D O E S I T R U N I N T H E F A M I L Y ?GETTING INTO THE SWING OF EXERCISE

FAMILY FOCUS VOICES

A publication of theNational Kidney

Foundation

Vol 13, No 3Summer 2004

NEXT ISSUEWHAT YOU NEED TO KNOWABOUT TRANSPLANTATION

Continued on page 2

When A.J. Carpenter attended a KEEP screening at his churchin 2003, he learned his kidneys were functioning below nor-mal. Afterward, he saw a doctor who prescribed medicationand lifestyle changes, slowing the progression of his kidneydisease. “When I walked into the screening that day,” A.J.said, “I had no idea it would turn out to have such a lastingimpact on my life and health.”

F R O M T H E E D I T O R

Karren King

At first glance you may see this issue of Family Focus and think it has

absolutely nothing to do with you. Whenmost of us first think of inherited chronickidney diseases (CKD), we may think ofdiseases like polycystic kidney disease(PKD). While it is true that PKD is oneform of CKD that can be passed to familymembers, many other causes of CKD alsohave family ties. According to the UnitedStates Renal Data System’s 2003 AnnualReport, 45 percent of people who begandialysis in 2001 had diabetes mellitus and26 percent had hypertension (high bloodpressure) as their primary causes of CKD.As you will read in Dr. John Sedor’s articleon page 11, both diabetes and hyperten-sion tend to run in families. The fitnessand nutrition articles both provide verybeneficial information about things youcan do to be proactive in your care if eitheryou or someone in your family has dia-betes or high blood pressure.

I hope that you always share FamilyFocus with the members of your family.The information can help them under-stand your illness and its treatment, as

shares what they had to say as interestingas I did. I also want to remind you thatthere will be a question that relates to thetheme of each Family Focus issue postedon the National Kidney Foundation’s Website. Since our next issue is on transplan-tation, we want you to share with useither what made you decide to go on thetransplant list or receive a kidney trans-plant or why you elected not to pursue atransplant. Please go to www.familyfocusvoices.orgto add your thoughts to our messageboard. While you are there, you mightalso want to browse the responses to pre-vious questions, or back issues of FamilyFocus, which are available online.

Once again, it is nearing the time forour Editorial Board to plan Family Focusfor 2005. Help us keep the newspaper rel-evant for you by sharing ideas you mayhave for future themes for a FamilyFocus issue or ways we may be able toimprove the publication.

Karren KingFor the Editorial Board

well as some of the things you might expe-rience. If something affects you, it will alsoaffect those who care about you, and justas it is important for you to be educated, itis also important for them. However, it isespecially important for you to share thisparticular issue. Your family needs toknow if they may be at risk for either thediseases that can lead to CKD, or for CKDitself, and what they can do about it.

I also want to thank our readers whovoiced their opinions on Family FocusVoices and the Patient and Family Councillistserv about whether to have genetictesting. I hope you find the article that

EDITOR-IN-CHIEF: Karren King, MSW, ACSW, LCSWKansas City, MO

FITNESS EDITOR: Pedro Recalde, MS, ACSMDowney, CA

MEDICAL EDITOR: Wendy W. Brown, MD, Nashville, TNNURSING EDITOR: Bobbie Knotek, RN, BSN, Plano, TX

NUTRITION EDITOR: Lori Fedje, RD, LD, Portland, ORPATIENT EDITOR: Dale Ester, Glendale, AZ

PEDIATRIC EDITOR: Barbara Fivush, MD, Baltimore, MDSOCIAL WORK EDITOR: Mary Beth Callahan, ACSW/LMSW-

ACP, Dallas, TXTRANSPLANT EDITOR: Linda Harte, RN, BSN, MA, CNN, CCT

Kansas City, MOESRD NETWORK LIAISON: Roberta Bachelder, MA

Woodbridge, CT

EDITORIAL OFFICE: NATIONAL KIDNEY FOUNDATION30 E. 33rd Street, New York, NY 10016800-622-9010 • 212-889-2210www.kidney.orge-mail: info@kidney.org

EDITORIAL DIRECTOR: Gigi PolitoskiEDITORIAL MANAGER: Sheila Weiner, MSW, LCSW

EXECUTIVE EDITOR: Sara Kosowsky MANAGING EDITOR: William Comerford

PRODUCTION MANAGER: Sunil VyasDESIGN DIRECTOR: Oumaya Abi Saab

2 FAMILY FOCUS • Volume 13, Number 3

NKF Family Focus is published quarterlyby the National Kidney Foundation.

Opinions expressed in this newspaper donot necessarily represent the position of

the National Kidney Foundation

Diseases in October 2003, summa-rized the findings of this effort toreach and improve the health ofpeople at risk for CKD. Thesefindings are important in helpinghealth care providers learn moreabout individuals who are atgreater risk of developing CKD.

The majority of KEEP enrolleeswere minorities, and women weretwice as likely to participate.Enrollees were more likely to beoverweight or obese than people inthe general population. More thanhalf of the participants had a his-tory of hypertension, with a com-parable amount still having bloodpressures greater than 140/90 mmHg. Almost a quarter reportedhaving diabetes, and 68 percentreported a family history of thedisease. Although only two tothree percent reported havingCKD, 50 percent had signs of thedisease through evidence of areduced kidney filtering capacityor by abnormal amounts of proteinin the urine (microalbuminuria).Women and minorities were more

likely than men and whites tohave evidence of kidney damage.

KEEP enrollees were more like-ly to have anemia than people inthe general population. Diabeticparticipants with Stage 3 CKD(moderate decline in kidney func-tion) were three times more likelyto be anemic.

The KEEP program is now per-formed in almost all of the 50NKF affiliates nationwide with1,500 to 2,000 people a month par-ticipating in screenings for CKDand receiving education about itsdiagnosis, treatment and long-term care. Participants areencouraged to share the informa-tion with their doctor to ensuregood follow-up medical care.

To find out about KEEP screen-ings in your area, contact the NKFat 1-800-622-9010 or visitwww.KEEPonline.org If youhave kidney disease, eitherencourage your family members to attend or bring them to one of these free kidney health screenings.

About the AuthorAllan Collins, MD, is a professor of medicine at theUniversity of Minnesota, and Director of the NationalKidney Foundation’s Kidney Early Evaluation Program.

Finding Kidney Disease EarlyContinued from page 1

FAMILY FOCUS • Volume 13, Number 3 3

My name is Cate Lewis andI would like to share my story of a

hereditary genetic disorder called polycystickidney disease (PKD). I have been a volun-teer for the National Kidney Foundation(NKF) since 1999 and proudly serve as theimmediate past chair of the Patient andFamily Council (PFC) ExecutiveCommittee.

My story began in 1972 when I wasin my last year of nursing school. Mydad had just been diagnosed withPKD by his family physician, whenprobing the cause of his uncontrolledhigh blood pressure. An ultrasound ofhis kidneys revealed many large fluid-filled cysts in both kidneys. I vividlyremember that not only did his doctorhave little knowledge of this disease,but my medical textbook had a oneparagraph description ending with thewords “prognosis is poor.”

As good fortune would have it, in 1974there was an RN position available in anewly opened dialysis unit at the local hos-pital. It made sense to me to learn asmuch as possible about caring for peoplewith chronic kidney disease (CKD) inorder to prepare for what was potentiallyin store for my dad.

Later that same year I was also diag-nosed with PKD. My situation followed thesame scenario; dangerously elevated bloodpressure readings triggered the need foran ultrasound to examine my kidneys.Another test called anintravenous pyelogram(IVP) confirmed that thediagnosis was PKD.

My biggest concern atthat time, being 23 yearsold and engaged to bemarried the followingMay, was making thedecision about havingchildren. I have a clear picture of my kid-ney doctor sitting in my hospital roomafter receiving the final test results anddiscussing PKD with my fiancé and me.His advice, in response to our concernsabout this disease being hereditary, wasthat advances would continue in not onlythe research of PKD but in dialysis andtransplant technology. He also advisedthat the key elements in controlling kid-ney function were to keep my blood pres-sure and salt intake under control.

We were married in May 1975 and ouronly child, Jay, was born in March of 1978.We were blessed with a beautiful healthybaby, but would not know until he was 18that he had acquired PKD. Jay had a hardfall during a snowboarding jump anddeveloped bloody urine. My hope was thatthis bleeding was from a bruised kidney,but my heart told me that he needed tohave PKD ruled out. Ultrasound resultsshowed that his kidneys were filled withnumerous fluid filled cysts. These cystscan become extremely large and cause var-ious degrees of pain. They can rupture andcause hematuria (bloody urine) and havethe potential to become infected. The cysts

tend to grow slowly and are generally notvisible by ultrasound until late teen years.

My dad’s kidneys failed in 1979, and heand my mom successfully performed homehemodialysis for the next four years untilhis death in 1983.

I continued to work in the dialysis unitand my kidney function remained normaluntil November 1998. At that time my crea-

tinine (a waste product in the blood that isnormally removed by the kidneys andshould be less than 1.0) reached a level of4.0, which meant I had stage 4 CKD. It wastime to have an initial transplant evaluationand a vascular access created, called a fistu-la, for hemodialysis. It is essential to havethe fistula created early, as the blood vesselsneed to enlarge or mature prior to use.

Having the transplant referraland workup completed before dial-ysis begins can sometimes elimi-nate the need for even startingdialysis. This may occur when atransplant candidate has a livingdonor or when a perfect antigenmatch from a non-living donorbecomes available.

Throughout the years I was trou-bled with severe pain in both cystic

kidneys, episodes of cysts rupturing andbleeding and one severe kidney infectionrequiring hospitalization.

My kidneys failed in May 1999.Although my first choice for therapy wascontinuous ambulatory peritoneal dialysis(CAPD), I had the fistula created “as aback-up” because I knew that CAPD some-times is not effective when people withPKD have huge kidneys due to the cysts.Too much of the abdominal space is takenup by the massive kidneys and this mayinterfere with the filtration of waste prod-ucts through the CAPD process. I alsoknew that having several abdominal sur-geries might eliminate CAPD from my

dialysis choices becausescar tissue can preventgood removal of wasteproducts. As it turnedout, I was unable to doCAPD and I beganhemodialysis whilewaiting for a kidneytransplant.

Hemodialysis workedwell from May 1999

until I was blessed with a successful trans-plant from a non-living donor onNovember 18, 2001. There was, however,one major surgery that took place sixmonths before the transplant. Although itis not a common practice to have nativekidneys removed before a transplant, it issometimes recommended. My transplantsurgeon felt strongly about the need toremove both kidneys before receiving atransplant, because the risk of infection of

Kidney Disease AcrossGenerations

By Cate Lewis, RN

A registered nurse tells the story of kidney

disease in her family—her father,

her son and herself

Cate Lewis, RN

Y O U A N D Y O U R F A M I L Y

My biggest concern at that time, being 23 years old and engaged to be married the following May, was making the decision about

having children.

Continued on page 6

{ {

4 FAMILY FOCUS • Volume 13, Number 3

In the last few decades, genetics has brought about a

completely different element tohealth care that once did notexist. Previously, a diagnosiswas made and very littlethought was given to how itmight affect a family’s futuregenerations. Today, the medicalcommunity is buzzing with theword “genetic,” and health careprofessionals are spending theirlives finding cures for the dis-eases that are all too familiar tomany families.

In my role as a genetic coun-selor, I talk with families whoare enrolled in our studies oninherited forms of FocalSegmental Glomeruloscle-rosis (FSGS). The two mostcommon questions that peopleask are: “How did I get thisdisease?” and “Will I pass it on

Family Planning With a Genetic Condition

By Stephanie Herbert

A genetic counselor explains her work.

AFFECTED: a genetic termused to describe a person whohas a genetic disease and isshowing physical symptoms ofthe disease.

CARRIER: a term used todescribe a person who “carries”the genes that cause a geneticdisease, but may or may not beshowing physical symptoms ofthe disease.

CYSTIC FIBROSIS (CF): acommon, recessively inheritedgenetic disease that can causean overproduction of mucus inthe lungs. This can lead tosevere breathing difficultiesand possible respiratory orheart failure.

FOCAL SEGMENTALGLOMERULOSCLEROSIS(FSGS): an inherited diseasethat destroys the normal func-tion of the kidney and can leadto kidney failure.

INHERITANCE: To receive agene and the properties of thatgene from an older generation.

RECESSIVE INHERI-TANCE: both mother andfather have to donate a copy ofthe gene for their child tohave inherited the trait, char-acteristic or disease.

DOMINANT INHERI-TANCE: only one copy of thegene needs to be inheritedfrom either parent for thechild to inherit the trait, char-acteristic or disease.

MUTATION: a “change” in aperson’s genetic make-up;often responsible for causinggenetic diseases/conditions.

SEX-LINKED CONDITION:a genetic condition that is oftenpassed from mother to son.

SPORADIC: a term used todescribe something that hashappened randomly.

GENE: the chemicals in livingcreatures with the instruc-tions for how to build and runthe organism.

GENETIC CONDITIONS(GENETIC DISEASES):diseases that can be passed on from one generation to the next.

GENETIC RISK ASSESS-MENT: an examination of aperson’s medical history todetermine if there are chancesof developing a genetic cond-

tion, or passing on a geneticcondition to the next generation.

HEMOPHILIA: a sex-linked,genetic condition that causes aperson’s blood to lose its abilityto clot. Therefore, increasedbleeding, bruising, and painfulswelling can often result fromcuts, abrasions and injury.

HUNTINGTON’S DISEASE:a genetic disease that leads tosevere degeneration of thebrain.

to my children?” Both ques-tions demand thoughtful andsensitive answers.

Genetic conditions are bydefinition “inherited condi-tions.” However, conditions canbe inherited in different ways.In some cases both parents,who are healthy, need to be“carriers” to pass on the con-dition to their child. Examplesof this type of disease are cys-tic fibrosis and Sickle CellAnemia. In other cases, such as

with the most common form ofpolycystic kidney disease andHuntington’s disease, oneparent who has the conditioncan pass it on to his or herchild. And finally, in othercases, a mother may be a “car-rier” of a condition that shecan pass on to her sons. This iswhat happens with hemophil-ia. Sometimes one genetic con-dition, such as FSGS, may havemany genetic causes and maybe inherited in more than one

way. Therefore, having a cor-rect diagnosis and knowingexactly how the disease wasinherited are important forunderstanding the risk ofinheriting it or passing it on.

Parents cannot choose whichof their genes they pass on, soit is often hard to know for cer-tain if a child will inherit thegenes that cause a disease.Some parents may choose toadopt a child, or not to have achild. Sometimes social, reli-gious or family pressures andpersonal beliefs may make thechoice of not having childrendifficult for many families,especially for those who arefacing a risk of passing on agenetic condition.

Genetic counselors help fam-ilies who are worried aboutgenetic risks. They offer a

U N D E R S T A N D I N G G E N E T I C S

CysticFibrosis

FSGS

Genetic Conditions

Huntington’sDisease

Inheritance

Sex-Linked

Conditions

Hemophilia

Sporadic

Affected

Gen

e

Ca

rrie

r

Mutation

Glossary of highlightedterms from the article

IMPORTANT TERMS

Continued on page 5

FAMILY FOCUS • Volume 13, Number 3 5

U N D E R S T A N D I N G G E N E T I C S

genetic risk assessment andinformation about the geneticconcern(s) and testing options(prenatal, carrier and confirma-tional). Prenatal testing is doneduring pregnancy, when blooddrawn from the fetus is testedto detect possible genetic orchromosomal abnormalities.Carrier testing is usually per-formed to determine if a person“carries” the gene for a certaingenetic condition, even if theperson does not show any othersigns of the condition. Thisinformation can help a persondetermine what chance he orshe may have of passing thecondition on to his or her chil-dren. “Confirmational testing”is done to confirm, or rule out,a genetic diagnosis in someonewho is showing signs of thecondition.

Counselors can also talk withfamilies about assisted reproduc-tive options. These are technolo-gies that are often used forinfertility, but thatcan beusedto helpparentsconceivea childwithoutgeneticabnormali-ties. Some ofthese tech-nologiesinclude in-vitrofertilization(IVT), gameteintra-fallopian transfer (GIFT),pre-implantation genetic diagno-sis (PGD) and intraplasmicsperm injection (ICSI).

Finally, genetic counselorsalso help families with informa-

tion about thetreatment andmanagement ofgenetic disorders,and they providecounseling andsupport sofamilies cannot onlymake well-informeddecisionsabouttheirhealth

and family plan-ning, but also adjust to their

genetic status.

As our understanding ofgenetics improves and genetic testing options increase, par-

ents and families will be facedwith increasingly complexreproductive options and choic-es, making genetic counselingservices more valuable thanever. To learn more aboutgenetic counseling or to find agenetic counselor in your area,visit the National Society ofGenetic Counselors Web site atwww.nsgc.org

About the AuthorStephanie Herbert is a GeneticCounselor in the lab of Dr.Martin Pollak at Brigham andWomen's Hospital/HarvardInstitutes of Medicine inBoston, Massachusetts.

If you began to experi-ence burning or tingling in

your hands and feet and adecreased ability to sweat whenoverly hot, would you think ofthe rare genetic illness knownas Fabry disease? Would yourdoctor?

Unfortunately, becauseFabry disease is so rare, it iseasily missed. Patients areoften initially misdiagnosedbecause their symptoms areconfused with other illnesses.

Fabry disease is a geneticdisorder in which the bodybecomes unable to break downa fatty substance called globo-triaosylceramide, causing it tobuild up in the body. Overtime, the fat buildup damagescells in blood vessels and tis-sues of the kidneys, heart, skinand brain. This can eventuallylead to life-threatening prob-lems, including heart attacks,strokes and kidney failure.

The following symptoms areoften the first warning signs ofFabry disease:

■ Burning or tingling in handsand feet;

■ Decreased ability to sweat,causing overheating, fre-quent fever andsensitivity to hotweather; and

■ Reddish-purplishskin rash.

Overtime, thedamage toblood vesselscan lead toproblems inthe stomach,heart, kidneyand nervoussystem.Doctors whosuspect that a

person has Fabry disease mayorder certain tests needed todiagnose the condition, whichlook at the individual’s genetic

makeup and measurethe activity of an

enzyme missingin people with

the disease.

The dis-ease is morecommon inmen and iscaused by a

defectivegene located

on the X chro-mosome,

meaningthat it runsin families.And manyfamilies suf-

fer alone—recent esti-matessuggest thediseaseaffects onlyone in40,000 males.

Because the disease is sorare, few treatments exist. InApril, the U.S. Food and DrugAdministration approved thefirst treatment targeted forFabry disease, made of a ver-sion of an enzyme people withthe disease either lack or carryin very low amounts. Thetreatment, given by injectioninto a vein, reduces fatdeposits in many types of cells. It is hoped that thistreatment will help preventlife-threatening damage toimportant organs and enablethose with Fabry disease tolive healthier lives.

For a free brochure onFabry disease, contact theNational Kidney Foundation at 1-800-622-9010 or online atwww.kidney.org

Fabry Disease: Diagnosing a Rare Genetic Disorder

Scientists have finally developed a treatment

for the condition known as Fabry disease.

Doug Morgan was misdiagnosed severaltimes before doctors learned he had Fabry dis-ease. Since beginning his new treatment, hiskidney function has stabilized and he contin-ues to work as a research assistant at the

University of Alabama.

High blood pressure is aleading cause of chronic

kidney disease (CKD) in theU.S. African Americans areaffected by high blood pressureand CKD at a very high rate.Holly Kramer, MD, an NKFYoung Investigator Grant recip-ient at Loyola UniversityMedical Center in Maywood,Illinois, is conducting studies ofthe roles played by genetic andenvironmental factors in theincreased risk of high bloodpressure and CKD amongAfrican Americans.

African Americans experi-ence kidney damage because ofhigh blood pressure more oftenthan other groups. However, itis not clear whether thisincreased risk of kidney diseaseamong African Americans isdue to genetic factors, environ-mental factors or both.Environmental factors includesuch things as socioeconomicstatus and access to healthcare, both of which could play arole in developing high bloodpressure or kidney disease. It isimpossible to know if AfricanAmericans have a greatergenetic susceptibility to highblood pressure and CKD simply

by comparing black and white Americans, since this wouldassume that the two groupshave been exposed to the sameenvironmental factors. A differ-ent test for racial tendency to adisease is to compare geneticallyrelated populations living in dif-ferent social environments.Currently, data on the preva-lence of CKD among blacks liv-ing in other parts of the world,such as Africa or the Caribbean,remains extremely limited.

THE PURPOSE OF DR. KRAMER’SSTUDY IS TO:

Perform a cross-culturalstudy of the prevalence of CKDin several different black populations and see whetherthe prevalence differs by environment

Determine the associationbetween high blood pressureand CKD in several differentblack populations and deter-mine whether this associationdiffers by environment

Examine the prevalence ofcertain genetic mutations(changes in genes) that areassociated with high bloodpressure and CKD in severaldifferent black populations

Dr. Kramer’s findings maybe used to better understandwhy high blood pressure andCKD are more common amongAfrican Americans. Her ulti-mate goal is to provide infor-mation that will help lower therisk of kidney disease and kid-ney failure in the AfricanAmerican population.

About the Author:

Holly Kramer, MD, is an assis-tant professor in theDepartment of PreventiveMedicine and Epidemiologyand the Department ofMedicine at Loyola UniversityMedical Center in Maywood,Illinois. She received her med-ical degree from IndianaUniversity School of Medicinein 1994. She also earned aMaster of Public Health in2001 from the Harvard Schoolof Public Health. Dr. Kramerhas been involved in researchfor several years and has pub-lished in many prominent med-ical journals. She began herstudy as an NKF YoungInvestigator in 2003.

6 FAMILY FOCUS • Volume 13, Number 3

R E S E A R C H U P D A T E

National Kidney Foundation Young Investigator Studies High

Blood Pressure and KidneyDisease in African Americans

the enlarged kidneys after a transplantwould be dangerous when the immunesystem would be suppressed, or basically“sleeping,” because of the anti-rejectiondrugs. Coincidentally in 2002, I wasamong three people with CKD from ourfacility, all on waiting lists at differenttransplant centers, requiring kidneyremoval (nephrectomy).

Thirty-two years have passed since aname and face were connected to PKD forour family. I continue as a nephrologynurse at the same facility and treasureevery moment of life with the gift of a kidney. My son continues to do well and

has also chosen to care for people with kidney disease as a dialysis Patient Care Technician.

Technological advances continue toimprove the quality of life for people fac-ing kidney disease. Research efforts tofind a cure for PKD are ongoing. Anexcellent way to learn about this disease

as well as follow medical advances is tocontact the PKD Foundation by calling 1-800-753-2873 or by visiting their Web site at www.pkdcure.org

The National Kidney Foundation alsooffers a brochure, Polycystic KidneyDisease, that can help you make healthydecisions for yourself. Call 800-622-9010for more information.

Meanwhile, my best wishes to you all.Stay as healthy as possible, learn as muchas you can about kidney disease and enjoylife to the fullest.

About the AuthorCate Lewis is the Immediate Past Chairof the National Kidney Foundation’sPatient and Family Council.

Continued from page 3

Kidney Disease Across Generations

1

2

3

Holly Kramer, MD

POLYCYSTIC KIDNEY

FAMILY FOCUS • Volume 13, Number 3 7

K E E P I N G F I T

When we talk about traitsthat “run in the family,”

we often think about thingsthat are “in the genes,” but wesometimes forget that every-thing we do can possibly bepassed on to the next genera-tion. The habits you form areoften passed on and repeated bythose around you. The types ofthings that can be passed oninclude eating habits, such asthe types of food we eat andhow much we eat at each meal.Also, exercise habits and inter-est in your own personal healthcan be learned traits that arepassed on to those around you.

For some Americans, exer-cise has been associated withunpleasant feelings and experi-ences. Many people have start-ed an exercise program, butquit early because they couldnot exercise for more than afew minutes at a time orbecause they begin to cramp.They may then decide thatexercise is not for them. Fartoo often, unpleasant experi-

ences happen because we try todo too much exercise on ourfirst try. Only a very small per-centage of Americans can com-pete in marathons or try tomake a living by winning fit-ness competitions. However, ifyou want to exercise to improveyour health, increase yourenergy or lose some body fat,then the best thing to do is jointhe rest of America and exer-cise one step at a time.

One of the most importantgifts that you can pass on to your children, nieces, nephewsor grandchildren is the love forexercise. Fitness experts recom-mend that you reach the goalsof walking for 45 minutes toone hour, most days of the

week. The benefits of gettingyour family involved are impor-tant for you and for them. Bygetting your friends and familyinvolved, you are creating anenvironment that makes yourexercise routine enjoyable, plusyou are having a positive effecton the lives of those you carefor. So go ahead and take thenext step of sharing your newinterest in your own health andthe health of the ones you love.

I recently had the privilegeof talking with Gary Klaz, wholives in Los Angeles, California,and he wanted to share hisexercise success story. Gary hasbeen receiving hemodialysistreatments three days a weekfor nearly two and a half years,

but began exercising six yearsago. He confesses that it hasbeen difficult to stay with anexercise routine, but for the last eight months Gary has been going to an outpatient cardiac rehabilitation programon a regular basis.

HERE IS WHAT GARY HAS TO SAY.

“I have been exercising dueto my doctor’s recommenda-tions, but I do it so that I canlose weight and because it isgood for my heart. I enjoy car-diac rehab because the peopleare so nice to me. I love cominghere twice a week for one hour,7 a.m. to 8 a.m. I do not eatbreakfast until after I exerciseand I feel good doing that. I

usuallywalk 50minutes on the treadmill. I dofeel tired for several hoursafter each exercise session, butthen it goes away and I amokay. Before starting here, Idid nothing for my health. All I did was eat andgain weight, but exer-cise helps me managemy weight.”

HOW IS YOUR ENERGYLEVEL?

“I feel good. I havean increase in myenergy level. When Igo to exercise, I amhappy. I used to beextremely overweight,weighing 600 pounds,and I almost died. Iwas very sad anddecided to have mystomach stapled. Thathelped me lose weight,but now I exercisewith cardiac rehaband I am happybecause the staff looksout for me.”

WERE YOU ENCOURAGED TOEXERCISE AS A CHILD?

“Well, my sister passed awayin the early ‘90s with an illnessassociated with being over-weight. She gave up on life. Myfather had one of his kidneys

removed during the ‘60sand he did not exercisebecause he was alwaystired. My parents didnot encourage me toexercise at home. Iwould definitely encour-age all kids today toexercise and take careof themselves. Stop eat-ing junk food, as well!”

DO YOU HAVE ANY ADVICEFOR OTHERS ON DIALYSIS?

“Yes. Just do it!Exercise! For yourhealth! There are nicepeople here to help andwe should take advan-tage of that.”

Thank you for your words ofencouragement, Gary!

Getting Into the Swing of Exercise

By Pedro Recalde, MS, ACSM

Sometimes we learn exercise habits from ourfamily—but it’s never too late to start!

One of the most important gifts that you

can pass on to your children, nieces, nephews

or grandchildren is the love for exercise.{ { JUMPSTART

HOPE.

*Consult your tax advisor for details.

There are lots of reasons to donate acar to the National Kidney Foundation.

A possible tax deduction* is only one.

Call1-800-488-CARS

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

Gary Klaz walks 50 minutestwice a week between 7 am and 8 am before breakfast.

8 FAMILY FOCUS • Volume 13, Number 3

C O P I N G W I T H K I D N E Y D I S E A S E

Did you know that if youhave kidney failure, the

members of your family have agreater chance of getting chron-ic kidney disease (CKD)?

This is because health prob-lems that cause kidney failure“run in the family.” Expertssay that if one member of afamily has kidney failure, allblood relatives over the age of

18 should be tested for CKD.Blood relatives include your

parents, grandparents, broth-ers, sisters, sons and daughters.

Does Someone You Love HaveChronic Kidney Disease?

By Bobbie Knotek, RN, BSN, CNN

I encourage you to talk toyour family members aboutgetting tested for CKD! It maybe hard to talk to them, butyou could be saving their lives.Copy “A Message to MyFamily” written below, give itto all of your family members,ask them to read it and thentalk to them about it.

A message to my family:YOU NEED TO GET TESTED to see if you have

chronic kidney disease (CKD). Finding and treatingchronic kidney disease early may slow it down and keepyou from needing dialysis or a kidney transplant. Youmay think you do not need to be tested for chronic kid-ney disease because you are feeling “fine.” What youmay not know is – you can feel fine and still haveCKD. So, even if you are feeling “fine,” you should gettested.

You can get tested at a clinic, a doctor’s office or aNational Kidney Foundation (NKF) KEEP screening. Tofind out where the KEEP screenings are being held, go tothe KEEP Web site at www.KEEPonline.org or call theNKF at 800-622-9010 and ask about KEEP screenings.

WATCH FOR THESE WARNING SIGNS OFCKD. Call to make a clinic or doctor appointment rightaway if you get one or more of these warning signs!

■ Swelling in parts of the body, especially around theeyes or ankles.

■ Pain in the lower back.

■ Burning or an unusual “feeling” while passing urine.

■ Bloody, foamy or coffee-colored urine.

■ Passing urine more often, especially during the night.

WHEN YOU GO TO THE DOCTOR TO GET TESTED FOR CKD:

■ Bring someone with you to help you understand andremember what the doctor says

■ Buy a notebook and bring it to the appointment. In the notebook, write:✦ Questions for the doctor.✦ Information and instructions from the doctor.

■ Tell the doctor your health history. It is especiallyimportant for the doctor to know:

✦ You have a blood relative who has kidney failure(and the cause of the kidney failure, if you know it).

✦ About health problems that put you at risk forkidney failure (including diabetes, high bloodpressure, kidney infections, kidney stones,prostate problems,).

✦ How you are treating these health problems. Ifyou have diabetes or high blood pressure, thedoctor needs to make sure you are doing every-thing you can to protect your kidneys.

✦ All of the medications that you are taking includ-ing prescription drugs and non-prescription sup-plements.

ASK THE DOCTOR TO PERFORM THESE THREE SIMPLE TESTS TO SCREEN FOR CKD:

1. Urine Microalbumin

This test gives better information thanurine protein and urine albumin tests areusually done in the doctor’s office. Itis one of the most impor-tant tests used to screenfor CKD. Even thoughit is a simple test, notevery doctor’s officehas the supplies to dothe test. If your doctordoes not have the rightsupplies in the office, ask tohave a urine sample sent to a labthat can do the test.

Have your family members read this letterabout chronic kidney disease.

C O P I N G W I T H K I D N E Y D I S E A S E

FAMILY FOCUS • Volume 13, Number 3 9

AboutCKDWhat you should know

IF A MEMBER OF YOUR FAMILY has kidney failure, youhave a greater chance of gettingCKD. This is because health prob-lems that cause kidney failure“run in the family.” Experts saythat if anyone in your family haskidney failure, you should be test-ed for CKD.

IT IS EVEN MORE LIKELYYOU COULD GET CKD if one orboth of these statements are true:

• Diabetes, hypertension or aninherited disease (like poly-cystic kidney disease) causedyour family member’s kidneyfailure.

• You belong to one of theseracial groups: AfricanAmerican, Hispanic, PacificIslander, Native American orNative Alaskan.

EACH YEAR 25,000 PEOPLEWITH DIABETES get kidney fail-ure and need dialysis or a kidneytransplant.

AFRICAN AMERICANS AREMORE LIKELY TO HAVEseverely high blood pressure at ayounger age and are also morelikely to get diabetes. (1 out of 3people with kidney failure isAfrican American).

IF YOU ALREADY HAVE CKDAND ARE BEING TREATED forhigh blood pressure, ask your doc-tor if you could switch to one ofthe special blood pressure medi-cines that helps to protect yourkidneys. These blood pressuremedicines are called ACEinhibitors and ARBs.

2. Blood Pressure Reading

Talk about your blood pressure with the doctor—ask these questions:■ What is my blood pressure? (Write your blood pressure results in

your notebook during every visit).

■ Is my blood pressure in the normal range (using the most recentblood pressure recommendations)?

■ Would lowering my blood pressure cut down my risk of getting kidneydisease?

■ If my blood pressure is higher than it should be, what can I do tomake it better?

If you are already being treated for high blood pressure, tell the doctor:

■ Whether or not you are taking your blood pres-sure medicine the way you are supposed to.

■ If you are having side effects, especiallythose that keep you from taking the blood

pressure medicines as ordered.

3. Serum Creatinine

This is a simple test to see how muchcreatinine is in your blood. Creatinine is a

chemical made by the muscles in your body. Whenthe muscles “dump” creatinine into the blood, the kid-

neys get rid of the creatinine and keep it from building up.When the kidneys are damaged (as in CKD), they cannot get ridof creatinine and it builds up in the body. Ask your doctor to:

■ Check your serum creatinine level.

■ Use your creatinine level to figure out your GlomerularFiltration Rate (GFR). GFR is used to help estimate kidney func-

tion. There is a math formula (called MDRD) that “translates” thecreatinine level into GFR. Your doctor can find the MDRD math for-mula by going to the National Kidney Foundation’s Web site andclicking on the “K/DOQI Clinical Practice Guidelines” tab.

EVEN IF THESE THREE TESTS ARE NORMAL, you could still be at risk of getting CKD (because of medical and family history). Ask how often you should come back to see the doctor and repeat the above tests.

There is a question posted onthe National Kidney

Foundation (NKF) Web sitethat relates to each issue ofFamily Focus. The questionthat 17 of our readers respond-ed to for this issue was, “DO YOU

THINK IT IS HELPFUL OR HARMFUL

TO HAVE GENETIC TESTING TO

FIND OUT IF YOU HAVE AN INHER-ITED DISEASE?”

Most of those who respondedbelieved that those who mayhave a potentially inheritedillness should have testing,while only one of therespondents believed that aperson should not havegenetic testing. Of course,others did not see this as an“either or” situation—sev-eral respondents believedthat there were possible posi-tive and negative outcomes ofgenetic testing. The largest per-centage of those who respond-ed, 41 percent, did not identifyhow the decision impactedthem, while 35 percent wereindividuals who have chronickidney disease (CKD), 12 per-cent were mothers of children

with CKD and a spouse and astaff person each represented 6percent of the sample. Three ofthose with CKD have polycystickidney disease (PKD). Two ofthem thought people at poten-tial risk of developing a diseaseshould be tested, but the otherperson did not agree. The otherindividuals with CKD, one withsystemic lupus erythematosus(SLE) and the other with IGAnephropathy, both believedthat genetic testing should bedone. Family members of thosewith CKD were mixed in theirresponses. One, a mother oftwo children with inheritedCKD, definitely thought thatindividuals at risk should be

tested, but the other two wereuncertain.

The feelings of those whorecommended testing could be

summed up with thiscomment: “Knowledge ispower; the more youknow, the less you fear.”There were three mainreasons that peoplefavored having genetictesting. The first is thatknowing you have the gene foran inherited disease allows youto do all you can to “delay or

minimize the potential sideeffects of the disease.” In thecase of CKD, this may includesuch things as early referral toa nephrologist, physical exer-cise and dietary changes.Others pointed out that know-ing about potentially inheriteddiseases could aid people intheir decisions about whetherto have children. Lastly, somestressed the importance ofhelping scientists furtherunderstand the disease anddevelop a cure.

The opposite viewpoint, notto be tested, stemmed from thebelief that in the case of PKD,there is little that can be doneto stop the disease process.

This individual wrote that those at risk for PKD, even ifthey do not know whether theyhave the gene, should be awareof their diet and blood pres-

sure. Another concern wasthe possible negativeimpact that testing couldhave on one’s ability to getinsurance. If a test showedthe presence of a gene thatcauses an inherited dis-

ease, readers worried that thisinformation could affect the costor availability of insurance.

Those who were mixed in their feelings about genetictesting also expressed concern about getting health

insurance, at least at an afford-able rate, and possible job dis-crimination if it was knownthat a person had an inheriteddisease. Others expressed con-cern that knowing that a dis-ease was inherited could causenegative feelings among familymembers who might placeblame or feel guilt. The emo-tional stress that people mightfeel knowing they have a dis-ease for which there is no curewas also a concern. Onerespondent pointed out that aperson may have a genetic linkthat is an indicator of poten-

tially developing a diseasebut may never develop thedisease. This could placesomeone under tremendous, needless stress.

As you can see from read-ing the thoughtful responses

of our readers, there is noright or easy answer for every-one when faced with the ques-tion of whether to have genetictesting. This is a question thatcan only be answered by eachperson for himself or herselfafter carefully considering allthe issues raised by genetictesting.

10 FAMILY FOCUS • Volume 13, Number 3

To Have Genetic Testing…Or Not?By Karren King, MSW, ACSW, LCSW

F A M I L Y F O C U S V O I C E S

“Knowledge is power; the more you know, the less you fear.”{ {

Family Focus VOICESWE LOVE TO HEAR FROM OUR READERS, so every issueof Family Focus now includes a special question.

Read the question below, also posted online at www.familyfocusvoices.org, and let us know what you think.

How did you make the treatment decision about whether or not to pursue a kidney transplant?

You may visit the Web site aboveto share your thoughts, or sendyour response in writing to:

Family Focus Voices30 East 33rd StreetNew York, NY 10016

Family Focus readers give their opinionson genetic testing.

FAMILY FOCUS • Volume 13, Number 3 11

M E D I C A L U P D A T E

Chronic kidney disease(CKD) is common in the

United States. During the1990s, the U.S. governmentfound out how many people hadkidney disease by measuringmarkers of kidney function(such as waste products in theblood and protein in the urine)in a group of volunteers whowere representative of the U.S.population. The results showedthat about 6 to 8 million peoplehad moderately severe kidneydisease, a number thatincreased to 10 to 20 million ifpeople with abnormal amountsof protein in their urine wereincluded. Nearly 100,000 peoplestart dialysis or receive a kidneytransplant each year. Thatnumber is greater than thenumber of people who learnthat they have breast or coloncancer annually. The cost tomedically treat all transplantand dialysis patients is morethan the entire NationalInstitutes of Health (NIH) year-ly budget—greater than $1.3billion. Those with CKD andtheir families risk becomingpoor because of health carecosts that are not covered byinsurance. CKD is a common,but unrecognized, epidemic.

The good news is that thereare some treatments to slowthe progression of kidney dis-ease. Because diabetes and highblood pressure are the twomain causes of CKD, it isimportant to see a doctor forexaminations, especially if youhave a family member with

high blood pressure, diabetes orCKD. However, not all peoplewith diabetes or high bloodpressure will develop kidneydisease. If you have diabetes,keep your blood sugar con-

trolled. If you have high bloodpressure, take your medicinesand keep your blood pressurenormal. All treatments need tostart early to be most helpful.Unfortunately, no treatment isa cure. Even with the best ther-apy, those with CKD often con-tinue to lose kidney function.

How do you know if you or aloved one should be tested forCKD? Research has foundanother important risk factorfor kidney disease, one thatmany people do not know.Doctors have known for a longtime that some types of rela-tively uncommon kidney dis-eases, like polycystic kidneydisease, run in families. Nowwe have learned that morecommon causes of kidney dis-ease, such as kidney diseasefrom diabetes and high bloodpressure, also run in families.If you have diabetes and have abrother, sister or parent withdiabetic kidney disease, thechance that you will have kid-ney disease during your life-time is almost 75 percent. Ifyou have diabetes but do nothave a relative with diabetickidney disease, you only have a25 percent chance of havingdiabetic kidney disease over thecourse of your lifetime.

Throughout the U.S., 20 to 30percent of people on dialysishave close family members ondialysis or with decreased kid-ney function. Family membersof those with CKD need to bescreened for kidney disease,

even if they do not have dia-betes or high blood pressure.

Why does kidney disease runin families? Genes contain theplans for each of us: our eyecolor, hair color, blood choles-

terol. Each gene has a code toproduce a building block calleda protein. Many diseases are, inpart, caused by faulty genes.Problems in the plans con-tained in our genes mean pro-tein building blocks are notmade properly or not made atall. If made with faulty pro-teins, our organs either do notfunction normally or may notheal completely when injured.Since kidney disease runs infamilies, scientists think CKDis caused, in part, by faulty(incorrect) genes. Faulty genescan be identified by collectingblood samples from people withCKD and their families or bycomparing the genes in thosewith CKD to a group of individ-uals who do not have CKD. TheNIH and the Juvenile DiabetesResearch Foundation have eachorganized teams of scientists toidentify the faulty genes thatcause CKD. Understanding thecauses of CKD will help scien-tists identify new ways to treatthese medical problems. In

addition, knowing which peoplecarry CKD genes will allow doc-tors to know who is at risk fordeveloping CKD and who maybenefit most from early treat-ment and more frequent doctorvisits.

What can you do now? If youhave diabetes or high bloodpressure, you are at risk forhaving CKD. Work hard to con-trol your blood pressure andblood sugar. Your risk is evengreater if you are AfricanAmerican, Mexican American,

Pacific Islander, AmericanIndian or Alaska Native. If youhave a sister, brother or parentwith CKD, you are at risk forhaving CKD. Ask your doctorto check you for CKD. Simpletests of your blood and urinecan determine if you have it.Starting treatment early, whendamage to your kidneys is lim-ited, increases the chance thatkidney disease can be con-trolled. You can help preventkidney disease in yourself andin your family members.

About the AuthorJohn Sedor, MD, is a memberof the Departments of Medicineand Physiology andBiophysics, School of Medicine,Case Western Reserve Univers-ity and the RammelkampCenter for Research andEducation, MetroHealthSystem, in Cleveland, Ohio.

Chronic Kidney Disease:It’s All in the Family

By John R. Sedor, MD

What have genes taught us about CKD?

The good news is that thereare some treatments to slow theprogression of kidney disease.

Starting treatment early, when damage

to your kidneys is limited, increases

the chance that kidney disease can

be controlled.{ {

12 FAMILY FOCUS • Volume 13, Number 3

People with chronic kidneydisease and their family

members should know thatrecent decisions by the UnitedStates Supreme Court haveexpanded the legal protectionsfor individuals with chronic dis-ease and the members of theirfamilies made possible by theAmericans with Disabilities Act(ADA) and the Family andMedical Leave Act (FMLA). Inaddition, the U.S. Senate(although not the U.S. Houseof Representatives) has passedlegislation that would prohibitinsurance companies andemployers from discriminationon the basis of genetic informa-tion.

The Senate bill, S. 1053, the“Genetic InformationNondiscrimination Act of 2003,”was designed to ease the public’sfears about the potential forgenetic discrimination. This billwould allow people to takeadvantage of genetic testing andresearch projects and new treat-ments developed through genet-ic research without the fear oflosing access to health insuranceor hurting career opportunities.If this bill becomes law, healthinsurers, including those provid-ing either group or individualcoverage, could not request orrequire an individual (or a fami-ly member who would be cov-ered by the insurance) to have agenetic test. Similarly, once S.1053 is enacted, health insur-ance premiums or contributionscould not be adjusted on thebasis of genetic information. Thebill would also make it illegal foran employer not to hire, to ter-minate or to discriminate in hir-ing (discrimination in hiringincludes hiring people for lessthan appropriate pay) because ofgenetic information. It wouldalso outlaw any attempt by anemployer to classify employeesbased on genetic information ifthat practice might deprive anyemployee of opportunities avail-able to other workers. A similarbill in the U. S. House ofRepresentatives, H.R. 1910, has

been co-sponsored by 240 mem-bers of that chamber. However,it has not been placed on the cal-endar for a vote.

The Family and MedicalLeave Act (FMLA) entitlesemployees who have been on thepayroll for at least 12 months totake up to 12 weeks of unpaid

leave annually, when needed, tocare for their own health or toprovide care for a child, spouseor parent who has a seriousmedical condition. The employermust also keep the same grouphealth plan coverage during theentire leave. However, anemployer can require that theemployee use any accrued paidvacation time, personal leave orfamily leave before grantingFMLA leave. When the need forthe leave is foreseeable, theemployee must provide 30 daysadvance notice. When the needis not foreseeable, the employeemust provide notice as soon aspractical.

IN THE CASE OF NEVADADEPARTMENT OF HUMANRESOURCES V. HIBBS, decid-ed May 27, 2003, the U.S.Supreme Court made it clear

that the protections providedby FMLA, including the rightto sue for damages for violationof the statute, are also avail-able to employees of state gov-ernments. In this case, Mr.Hibbs was discharged fromemployment by the NevadaDepartment of HumanResources after the agency

informed him that he had usedall of his FMLA leave to care forhis ailing wife and that no fur-ther leave would be granted. Hewent to court to get reinstatedin his job and to sue for mone-tary damages. The state ofNevada challenged his right tosue, but the Supreme Courtdecided that the case should goto trial.

Since 1990, the ADA hasprohibited discriminationagainst disabled individuals inthe areas of employment, pub-lic services, public accommoda-tions, transportation andcommunication (especially forthose with hearing or visualimpairments). Removal ofarchitectural barriers (e.g., bybuilding ramps and elevators) is, perhaps, the most visible impact of this legislation in thelast 14 years.

THE CASE OF PGA TOUR,INC., V. MARTIN, decided onMay 29, 2001 by the U.S.Supreme Court, concerned thepart of the ADA statute govern-ing public accommodations.Title III of ADA requires anorganization operating a “pub-lic” accommodation to makereasonable modifications whennecessary to accommodate indi-viduals with disabilities. Mr.Martin, a professional golferwith a degenerative circulatorydisorder, requested permissionto use a golf cart, rather thanwalk from hole to hole, duringthe third stage of a qualifyingProfessional Golf Association(PGA) tournament. The PGAargued that the play areas ofits tour competitions are notplaces of public accommodationwith the scope of Title III. TheSupreme Court, however,found that the PGA golf toursand their qualifying rounds fitwithin Title III’s coverage ofpublic accommodations, eventhough the PGA required a$3,000 entry fee to play inthese events.

It is not necessary to go tocourt to claim your rightsunder FMLA or ADA. ADAcomplaints can be made to theEqual EmploymentOpportunity Commission.Employees who believe theirFMLA rights have been violat-ed may file a complaint withthe Department of Labor.

Similarly, Family Focusreaders can play an active rolein fostering genetic nondiscrim-ination by encouraging mem-bers of the U.S. House ofRepresentatives to support pas-sage of H.R. 1910. To identifyyour representative, check theGovernment Relations page at the NKF Web site, www.kidney.org

Dolph Chianchiano, JD,MPH, is the National KidneyFoundation’s Vice President ofHealth Policy and Research.

Congress and the Supreme CourtConcerned with Chronic

Disease ProtectionBy Dolph Chianchiano, JD, MPH

What is the government doing about genetic advances?

L E G I S L A T I V E U P D A T E

The Senate bill, S. 1053,

the “Genetic Information

Nondiscrimination Act

of 2003,” was designed to

ease the public’s fears

about the potential for

genetic discrimination.

FAMILY FOCUS • Volume 13, Number 3 13

L I V I N G W E L L

Growing up I always carried the fear in the back

of my mind that my kidneysmight one day fail. My motherwould do urine tests on us fol-lowing any infection, cold orsore throat to make sure wewere not “losing protein.” Why?My father’s kidneys had failed.He had a kidney transplant in1967, which lasted seven yearsbefore he passed away. Myfather’s brother died, at the ageof 21, of congestive heart fail-ure—a cause of death for manyin the final stages of kidney fail-ure—due to too much fluid onhis heart. The doctors called myuncle’s kidney problems differ-ent things—post streptococcalglomerulonephritis orpyelonephritis. However, it wasnot until my brother and I werediagnosed with kidney failure inthe 1990s that a hereditaryform of focal segmentalglomerulosclerosis (FSGS) wasdiagnosed in my family.

Finding out I “officially” hadchronic kidney disease was ablow. Knowing that it is inher-ited and that I could pass it onto my children—children Iwanted but did not yet have—was heartbreaking. Our familywas referred for genetic coun-seling where specialists con-ducted multiple tests and

studies to try to verify the dis-ease process and the hereditarypattern (how it is passed on).Blood tests were obtained andphysical examinations weredone on those family memberswho did not show signs of thedisease, as well as those of uswho did. Grandparents, aunts,uncles, cousins—everyone whowas willing gave blood samples.Part of me thought, “Whybother? These counselors willnot cure me, so what differencewill it make? It is not going tochange anything. I will stillhave this disease regardless ofwhether or not we know how Iinherited it.”

I had resigned myself to thefact that I “could not” havechildren, since I was not sure ifI would pass this disease on tothem. However, in 1992 wewere blessed with a miraclewhen our son was born. Whatwould the future hold for him?I wanted to know more. Wasmy son going to get sick? Will

my nieces get FSGS, eventhough my sister has notshown symptoms?

Now, remember those genet-ic counselors? Those specialistswhom I had grown tired of andhad become so frustrated withbecause they could not “fix”me? They were working hardall along, researching FSGSand my family, while I hadbeen living my life. Andalthough some of the originalfamily members who partici-pated have passed away, thesamples they provided yearsago have continued to help thestudy of my family’s progress.And their effort was not invain. It turns out thatresearchers have targeted thegenes in some cases of familialFSGS. Of course there is still alot yet to learn, but there isalso a lot they know. Theybelieve it is an autosomal domi-nant gene. What does thatmean for our family’s children?They have a 50 percent chance

of having this disease—or nothaving it! If they do not havethe gene, they likely will notget FSGS and cannot pass iton. Thanks to genetic counsel-ing, we can choose to have ourson tested and know a little bitmore about his future.

Is this good or bad? Thatdepends on your perspective. Iftests show he does not have thegene, it could get rid of thestress that lingers around everyaspect of our lives. If testsshow he has the gene, thedoubt is gone, and he can live afull and wonderful life preparedfor whatever may come.Knowledge can be very power-ful if you do not let fear con-sume you.

I had not planned on biologi-cally having children. I plannedon adoption. Would I have donethings differently knowingwhat I know now? Absolutelynot. But having more answersearlier on may have made theroad a bit easier. I am thankfulthat my mother had the fore-sight to look into the futureand know that although we areon a long road, through persist-ence and cooperation withgenetic counselors, eventuallyall the pieces of the puzzle willfit together.

L king To the Future Without FearBy Norma Knowles, MSW, LCSW

Making decisions in families with kidney failure.

Anemia, Blood pressure, Chronic kidney disease...

Everything You Need to Know from AtoZ www.kidney.org/atoz

Findquick answers to your

health-related questions. Allinformation is approved by the

NKF Scientific AdvisoryBoard.

Searchfor information by

browsing through cate-gories, such as

“Nutrition,” “Dialysis,” “Transplantation.”

Searchfor topics

alphabetically.

Adjustthe size of the text

to a comfortable sizefor reading.

E-mail informationto a friend or family

member.

Download NKFbrochures for more

detailed information.

14 FAMILY FOCUS • Volume 13, Number 3

deareditors

Dear Editor,

I love the paper Family Focus. It comes to our dial-

ysis center, and I love all of the information provided.

I am writing because I am still alive, thanks to a

great group of people who really care for their

patients! I have been on dialysis for over five years.

The nurses and staff where I go are the best in the

world. They are very friendly, helpful and well

trained. I love going for my sessions three times a

week. At first, I was very depressed, but they changed

my life.

I have made a lot of new friends at my center who I

will love and respect all my life. They are the best peo-

ple and “family” I know.

Eddie Williamson

Eddie Williamson dialyzes in Marietta, Georgia.

Editor’s Note: Do not forget that you can receive

Family Focus directly at your home by contacting the

National Kidney Foundation at 1-800-622-9010.

Dear Editor,

When I went on dialysis I wanted

something to occupy my time when on

the machine. I also wanted to know

something about all of the medicine I was

taking. As a result, in May of 2002 I

enrolled in a pharmacy technician

course. I received my diploma in

February 2003 and finished with a “96”

average.

After finishing the pharmacy course, I

decided to try to complete my engineer-

ing degree. I had started years ago before

I developed TB in 1980 and had to give

up my studies. I finally completed all of

the requirements for the Bachelor of

Electronics Engineering in 2004.My future plans are to continue on for

a Master of Science in electronics engi-

neering and a Master of Sciences in com-

puter science.

Sincerely,

James M. Gibbons, Jr.James Gibbons has been on dialysis

since January 2002 at Hudson Valley

Dialysis in Tarrytown, New York.

Mrs. Annie and Mrs. Yuka

By Brian K. Davis

As they beautifully smile with easeAt the numerous faces that pass them byThey are as comfortable as they can be

With pillows, blankets, and chair reclinedDay after day their smiles are unchanged

Even when they’re not feeling so wellTheir lovely attitudes remain the sameThese wonderful women are a Godsend

They enhance the daily lives around themIt is a comfort to see their lovely smilesAnd to know that God is favoring them

Even in some of their most fearful momentsThey manage to ease our minds with a grin

We are greatly privileged to know themAnd to have them both as friends.

Brian K. Davis is a dialysis technician in Neptune, NewJersey. He dedicates this to Ann Ross and Grace Yuka.

Drency Edward Dudley of Flint, Michigan, was on dialysis for six years.

He received a kidney transplant in 2002.

HaikuBy Trey Sager

O dialysis1, 2, 3, 4, 5, 6 – Iwill do it again.

In this unit you must be

able to fight all infec-

tions and germs.

FAMILY FOCUS • Volume 13, Number 3 15

Y O U R D I E T

Has someone in your family been told their kidneys do

not work well? Perhaps theyneed dialysis several times aweek to replace the job theirkidneys did or have had a kid-ney transplant. About one innine Americans have kidneysthat do not work well. Over350,000 Americans receive dial-ysis for kidney failure. If some-one in your family has been toldtheir kidneys do not work well,that they may need kidneyreplacement treatment in thefuture or is already receivingdialysis, you too may be at risk.How would you know?

Begin by finding out moreabout your family’s medicalhistory. If one or more familymembers has needed dialysisyou should find out whatcaused their kidneys to stopworking. Diabetes and highblood pressure are the two dis-eases that most often cause thekidneys to stop doing their jobover time. Both diabetes andhigh blood pressure run in fam-ilies or can be passed from onegeneration to the next. If yourfamily members have been toldthat they have one or both ofthese diseases you may be atrisk of developing diabetes orhigh blood pressure which, ifnot taken care of, could lead tochronic kidney disease.

You should tell your familydoctor if you have a family his-tory of diabetes, high bloodpressure or kidney disease.Regular blood sugar checksonce or twice a year can moni-

tor for diabetes. Blood sugarand blood pressure can bechecked during a doctor’s officevisit or at other communityhealth screening programs suchas the National KidneyFoundation (NKF) Kidney EarlyEvaluation Program (KEEP).You can find out more aboutKEEP programs in your com-munity by calling the NationalNKF office at 1-800-622-9010 orby visiting the NKF’s KEEPWeb sitewww.keeponline.org/ Youshould tell your doctor if youhave your blood sugar orblood pressure checkedaway from his or heroffice, especially ifyou are told it isborderline highor high.

Medicine, diet and exerciseare important to help controldiabetes and protect your kid-neys. Working with a dietitian,you can find an eating plan tohelp manage your blood sugar.You can ask your doctor to rec-ommend a dietitian. Carbo-

hydrates, or the sugars andstarches you eat, will need tobe limited and spread out inmeals and snacks over the day.Breads, fruits, milk, some veg-etables, desserts and othersweets have most sources of car-bohydrates in the diet. Losingweight can also aid blood sugarcontrol. Slow, steady weight lossof one to two pounds per weekto a weight goal set by you andyour dietitian is best. Changingyour eating habits might includereducing portion sizes and limit-

ing or avoiding high caloriefoods such as fried foods and

sweets.

Lowering yourintake of salt or

sodium fromyour diet can

help controlhigh blood

pres-sure.

Too

much sodium causes more fluidto be held in the body and cancause a rise in blood pressure.Processed foods and those witha lot of sodium such assausages, many deli meats,canned or dehydrated foods,and those frozen foods withbreading or sauces are justsome of the foods that shouldbe avoided. Most fast foods arealso poor choices because theyare often high in fat and sodi-um. A review of your usual

food choices with a dietitianwill point out high sodiumfoods to limit or avoid, as wellas identify better, lower sodiumfood choices to help controlhigh blood pressure.

If kidney disease runs in thefamily, learn about your familymedical history. If diabetes orhigh blood pressure is thecause of the kidney disease,make sure you and your familymembers get checked regularlyfor these diseases as early aspossible. Finding out if youhave diabetes or high bloodpressure and protecting yourkidneys from the damage thatdiabetes or high blood pressurecan cause demands your effort.Follow the treatment plan pre-scribed by your doctor, includ-ing any changes in eatinghabits to control diabetes orhigh blood pressure.

About the AuthorAnn Beemer Cotton, MS, RD,lives in Appleton, WI. She hasover 20 years of experience andresearch with people who havechronic kidney disease. Annhas written prolifically aboutkidney failure and was recentlyelected as the Region 3Representative for the NationalKidney Foundation Council onRenal Nutrition.

Eating Right for At-Risk FamiliesBy Ann Beemer Cotton, MS, RD

Your dietary choices can make a big difference

Talk to your dietitian to review the best food choices for your con-dition. For example, people with diabetes need to limit sugars andstarches, so they should avoid bread, fruits and some other foods.

Medicine, diet and exercise are important to help control diabetes

and protect your kidneys. { {

FAMILY FOCUS • Volume 13, Number 3

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CMS is committed to provid-ing patients with information toassist them in making choicesabout their health care.Patients with chronic kidneydisease (CKD) can find informa-tion to compare dialysis facili-ties on the Dialysis FacilityCompare Web site atwww.medicare.gov/dialysis/home.asp

Patients and family memberscan compare dialysis facilitiesby the services they offer, aswell as by three measures ofquality care: hemodialysis ade-quacy, anemia and survival. TheWeb site also offers additional

resources for hemodialysis andperitoneal dialysis patients, pre-dialysis patients, pediatricpatients and those who aretransplanted. CMS is continual-ly testing and improving theDialysis Facility Compare Web site to better assist CKDpatients in managing their care.

Medicare Web Site for Kidney Patients

IN JUNE 2004, THE CENTERS FOR MEDICARE & MEDICAID SERVICES

(CMS) INTRODUCED A REVISED VERSION OF THEIR DIALYSIS FACILITY

COMPARE (DFC) WEB SITE ON www.medicare.gov

IN 2003, A NEW LAW WAS PASSED TO CHANGE PARTSOF MEDICARE. One of the changes is the new MedicareDrug Discount Card, which became available in May 2004.Some people can save up to 15 percent on prescription drugswith the Drug Discount Card. The card is free to some individ-uals with low incomes, and can cost up to $30 for others. Youcan also get a $600 credit on your card in 2004, but you needto apply before January 2005 or you will not get the credit.

There are many discount cards available. You may need helpfinding out if you are eligible for a card, choosing a discountcard and filling out the enrollment forms. Here is a list of pro-grams and services for help and information on the DrugDiscount Card:

Medicare 800-MEDICARE or 1-800-633-4227 (TTY/TDD 1-877-486-2408) Web Site www.medicare.gov

SHIP (State Health Insurance Assistance Program)Call Medicare or visit www.medicare.gov for your state’sSHIP

AARP 888-687-2277 (TTY/TDD 1-877-434-7598)Web Site www.aarp.org

Visit NKF’s Patient and Family Council Web page atwww.nkfkidneypatients.org and click on The DrugDiscount Card for more details on the discount cards.

The Drug Discount Card