special 10 anniversary issue focus · only one part of the total picture of rehabilitation....

This publication is a Family Focus Program of the National Kidney Foundation and is made possiblethrough an educational grant from Amgen.

amilyocusFin this issue

VOLUME 9, NUMBERS 2 & 3 FALL 1999/WINTER 2000

The Renal Community’s Newspaper

SELF-CAREpage 5

EXERCISEpage 7

FAMILY FOCUS SPOTLIGHTpage 8

THE BEST OF FAMILY FOCUSpage 10

GOOD NUTRITIONpage 19

NKF RISEpage 25

SPECIAL 10th ANNIVERSARY ISSUE

Whether you just found outyou have kidney disease orhave been receiving

treatment for some time, you need toknow how kidney disease will affectdifferent aspects of your life.

Rehabilitation is often thought of ashelping people with kidney diseasekeep or find jobs. Although vocationalrehabilitation is an important goal, it isonly one part of the total picture ofrehabilitation. Rehabilita-tion also means promotingstable health, a positiveattitude and enjoyableactivities. These factorsmake up what mostpeople call "quality of life."

Each individual'srehabilitation goals aredifferent and personal. Asyou think about what youneed to help you live longand well with kidneydisease, make a list. Thislist can help you come upwith rehabilitation goals.

Living with a chronicillness isn't easy. Learn-ing how to cope with yourillness is emotionalrehabilitation. To cope successfully,figure out what has helped you feelbetter when you've been sad orfrustrated in the past. Talk with otherswho have lived with kidney disease andlearn what helped them cope. Researchhas shown that faith and strong socialsupport can help you live longer.Consider which family members,friends and renal caregivers you canask to support and encourage youwhen you're having a rough day orfeeling down.

It's easy to feel out of control whenothers are telling you what to do, asoften happens when you have achronic illness like kidney disease.People who take an active role in theircare do better. Learn what you need toknow to help you take control of whatmay seem to be an uncontrollablesituation. Members of your health careteam are the consultants in youreducation. Keep a running list ofquestions as you think of them for

your health care team.Ask the most knowledge-able sources you can findfor answers. Order free orlow-cost materials fromorganizations such as the National KidneyFoundation. TheFoundation has an entireseries of brochures onrehabilitation and othertopics related to kidneydisease, which you canorder by calling (800)622-9010. Use the libraryand Internet to read moreabout your illness andtreatment choices.

Physical rehabilitationis also a key part of yourtreatment. When you feel

tired and weak, it's hard to find theenergy to do things you have to do,much less things you'd like to do.Make sure you are getting enoughdialysis and eating the right foods tokeep you strong. Most people withkidney failure are anemic, whichcauses them to feel tired and weak. Ifyou are anemic, find out how well your anemia is being controlled.

Rehabilitation for ESRD Patients:Live Well and Prosper

by Beth Witten, MSW, ACSW, LSCSW

continued on page 3

National KidneyFoundation®

Happy Birthday,

Family Focus!

Family Focus

celebrates 10 years

as the Renal

Community’s

Newspaper. See

inside for stories

on rehabilitation

and the best of the

last ten years.

Rehabilitation includes resumingphysical activities, as well asreaching emotional andvocational goals. (photo by Jay LaPrete)

Our heartfelt

thanks to

Amgen Inc.

for its support

of this special

Anniversary

Issue.

2

Family Focus Volume 9 Numbers 2 & 3

FROM THE EDITOR

Foryears,the

renal com-munity did notreadily discussthe topic ofrehabilitation,which wastypicallythought of invery narrow

terms relating to patients re-entering theworkforce. When attempts were made toconvince Congress to expand Medicarecoverage to those with renal disease,testimony was provided that 60 percent ofthose on dialysis would return to workfollowing retraining and 40 percent wouldbe able to remain vocationally activewithout further training.

1However,

although a 100 percent employment ratewas predicted, it did not actually happen.

As a result, the renal community beganto believe it had failed in the area ofrehabilitation. However, the testimony toCongress had not taken into accountfactors such as the increased age of thoseon dialysis, with many not being of typicalworking age, and barriers that programslike Social Security Disability would placeon returning to work.

There has been a resurgence of interestin renal rehabilitation over the pastseveral years, as the concept ofrehabilitation has come to be thought of

more broadly in terms of enhancedquality of life. This most certainlyincludes returning to or maintainingemployment, but also includes suchthings as volunteer work and educa-tion. Our definition of rehabilitationhas also come to include physicalfunctioning and emotional and socialwell-being. Lastly, there has beenrecognition that in order to achieve asatisfactory level of rehabilitation, aperson on dialysis must have certainpositive medical outcomes. Dialysisadequacy, nutritional status andhematocrit level all must be optimal soan individual can reach the desiredlevel of rehabilitation.

This issue of Family Focusshowcases this new, enlighteneddefinition of rehabilitation; each articledeals with rehabilitation from adifferent perspective. As you read thearticles, I urge you to consider thevarious areas of rehabilitation as theyrelate to you. What can you do to takecharge and assure that the goals youset for your personal rehabilitation,whatever they might be, are met?

This issue also marks a milestonefor Family Focus — its 10th

anniversary! The NKF has always beendedicated to providing education andassistance to those with chronic renalfailure and their families. Thus, it wasa logical step to develop this news-paper to further that mission. Thesepast 10 years represent the hard workand dedication of many individuals,including past and present editorialboard members and NKF staff. Thisissue, in addition to the rehabilitationfocus, includes the "best" of FamilyFocus' past articles. I hope you enjoyreading them as much as the editorialboard did when given the difficult taskof making the selections from so manyexcellent articles. On behalf of theeditorial board, I want to thank thedialysis community for extending theircongratulations. Also, I would like toacknowledge AMGEN for theirgenerous support of Family Focus overthe years.

Happy 10th anniversary FamilyFocus, and here's to the next 10 years!

Karren KingFor the Editorial Board

1. Gutman RA, Amara AH: Outcome oftherapy for end-stage uremia. Postgrad Med64: 183-194, 1978.

Karren King

NKF Family Focus is published quarterly by the National Kidney Foundation

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

Editor-in-Chief: Karren King, MSW, LCSW, ACSW

Kansas City, MO

Medical Editor: Nutrition Editor:Wendy W. Brown, MD Lori Fedje, RD, LD St. Louis, MO Portland, OR

Nursing Editor: Pediatric Editor: Deborah Brouwer, RN Bradley Warady, MDMcMurray, PA Kansas City, MO

Fitness Editor: Social Work Editor:David Miller, MS Jean Carosella, MSW, LCSW, ACSWSan Francisco, CA Hartford, CT

Patient Editor:Wayne Nix, Ann Arbor, MI

Editorial Office:National Kidney Foundation

30 E. 33rd Street, New York, NY 10016(800) 622-9010 • (212) 889-2210

http://www.kidney.org

Executive Editor: Diane Goetz Editorial Director: Gigi Politoski

Managing Editor: Sara Kosowsky Editorial Manager: Marilyn Swartz

Design Director: Oumaya Abi-Saab Production Manager: Stephanie Knox

AD

1/4 PAGE

Celebrating 10 years as the Renal Community’s Newspaper

� Turn to page 25 for a special memorialto Family Focus Patient Editor, Wayne Nix.


3

Ask for a copy of your lab report. Ifyour hematocrit is less than 33percent, EPO and iron may help.Consult with your health care team ifyou have any questions about thetreatment of anemia.

Exercise plays a major role inphysical rehabilitation. Studies haveshown that exercise can help buildstrength and endurance, reducedepression, help control bloodpressure, strengthen bones and raisehematocrit. A standard exerciseprogram requires that you start slowlyand increase your physical activity to30 to 45 minutes three times a week.Your health care team members canhelp you start an exercise programthat is geared toward your individualabilities and goals. (For more tips, seethe fitness article on page 7).

It's important to keep working orstay in school if possible. Resumingthese activities is part of vocationalrehabilitation. These activitiesprovide opportunities for financial,social and personal well-being. If you

think you might have to stop workingor going to school, ask your healthcare team for help. If you're beingtreated in a hemodialysis center, askabout scheduling dialysis around yourwork or school hours, or considerhome dialysis, which allows moreflexibility. Research has shown thatpeople who have a higher level ofphysical and vocational functioninghave a lower risk of hospitalizationand death.

If you had to quit school or stopworking when you became ill, considerother activities that will help you feelworthwhile and make you happy. Ifyou're considering returning to workbut don't know what type of work youcan do now, there are many employ-ment agencies and community collegesthat offer vocational testing. Your statevocational rehabilitation office may beable to help finance your education orretraining. You might also considerbecoming a volunteer, which will helptest or build your skills while helpingothers.

It is essential to review yourrehabilitation goals regularly to see

which you've met and which are stillin progress. Keeping motivated is thekey to successful rehabilitation. Youmay not notice gradual changes rightaway. Tracking progress on a wallchart or writing in a diary can helpyou stay motivated. Reading pastnotes in your diary may help you putyour current situation in perspectiveso setbacks don't become roadblocksthat stop you from moving ahead.

Your choices determine both howlong you live and how well you live.Although it's never easy to ask forhelp, others are willing and able tohelp you if you reach out and taketheir hand. You can be your biggestfoe or your strongest ally in achievingfull rehabilitation. The choice is up toyou.

Beth Witten, MSW, ACSW, LSCSW,has 20 years’ experience as anephrology social worker and is a renalrehabilitation consultant. Beth staffsthe Life Options RehabilitationResource Center and serves as patienteducation coordinator for the MissouriKidney Program Center for RenalEducation.

COVER STORYcontinued from page 1

Rehabilitation for ESRD Patients…


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1/2 page ad


4

Helping people with kidneyfailure lead active, productivelives is a team effort.

Successful rehabilitation requires thecooperation of family members,physicians and dialysis unit staff, aswell as your active participation as thepatient. Rehabilitation means enablingpatients to achieve the best quality oflife, but it may not mean exactly thesame thing for every person. For astudent, rehabilitation may involvereturning to school and after-schoolactivities. For a wage earner, it maymean having the ability to return towork, and for a homemaker, being ableto run the household and care forfamily. The entire health care team,including you, sets realistic goals. Asleader of the team, the doctor setsexpectations and attitudes, prescribesappropriate medical treatment andmanages the rehabilitation process.

SETTING EXPECTATIONS

For most patients, information aboutkidney failure and their own diagnosisfirst comes from a doctor. At this point,even before dialysis begins, thephysician can set the stage forsuccessful rehabilitation. How? First,the doctor can reassure patients that along life and a good quality of life arepossible even with End Stage RenalDisease (ESRD). Second, the physiciancan share information about how tolive with kidney failure. Doctors wholisten, reassure, encourage questionsand take time to answer them can helppatients feel that their lives are notover because they have ESRD—theyare just going to be different. Onepatient explained, "We have to knowright from the onset that we're notgoing to die, there are options, that it'sokay to be healthy, it's okay to befunctional, and that we can do it." 1

Doctors can—and should—createpositive expectations and attitudesamong other dialysis professionals.Establishing unit policies thatencourage self-care, patient educationand other rehabilitation-friendlyactivities make it clear that the priorityof the facility is to help patients live fulllives.

PRESCRIBING APPROPRIATE TREATMENT

You need to feel well to take advan-tage of rehabilitation opportunities.Helping dialysis patients stay physic-ally healthy is the most importantresponsibility of the doctor. It iscomplex to prescribe and deliverappropriate medical treatment forkidney failure and its many symptomsand related conditions. The NationalKidney Foundation Dialysis OutcomesQuality Initiative (NKF-DOQI) wasdeveloped to provide guidelines forhealth professionals who care forkidney patients. The medical expertswho worked on the guidelines agreedthat appropriate treatment mustinclude the following:

✎ Vascular access. A reliable,comfortable access is, literally, a lifelinefor patients. The arteriovenous (AV)fistula is the preferred form of access.Access problems, like infections orclotting, can lead to hospitalizationsand interfere with rehabilitation.Prevention, whenever possible, andaggressive management of accessproblems are an important part of thedoctor's role.

✎ Adequate dialysis. Gettingadequate dialysis is key to long-termsurvival, physical health andrehabilitation. How much dialysis isenough? Kidney doctors use formulas,Kt/V or Urea Reduction Rate (URR), tohelp calculate how much dialysis apatient should get in each treatment.NKF-DOQI recommends minimumvalues for Kt/V and URR for dialysispatients and pays special attention tothe different needs of hemodialysis and

peritoneal dialysis patients, and adultsand children. The "target" values areprescribed by your doctor and are theminimum amount of dialysis requiredfor each patient. It is important toremember that if you come late todialysis treatments or stop early, orskip peritoneal dialysis exchanges, youmay not be receiving the properamount of treatment.

✎ Anemia management. Leftuntreated, anemia (the shortage ofoxygen-carrying red blood cells) makespatients too tired, weak and confusedto participate in rehabilitationprograms. The kidneys make ahormone called erythropoietin thatstimulates the bone marrow to makered blood cells. When your kidneysdon't work, they stop making thishormone. Doctors prescribe a man-made form of the hormone erythro-poietin (EPO) and iron supplements tohelp correct the anemia. This hormoneis given either by vein or as injectionsunder the skin.

An NKF-DOQI guideline on nutritionfor both adult and pediatric patientswill soon be available. Doctors andrenal dietitians must ensure thatpatients get enough dietary protein tomeet their energy needs and preservemuscle. The renal diet also helpsreduce the buildup of wastes and fluidthat can only be removed by dialysis.Proper nutrition helps patientsmaintain their strength and avoidillness that can interfere with participa-tion in a rehabilitation program.

MANAGING THE REHABILITA-TION PROCESS

Good medical treatment based onNKF-DOQI guidelines forms a solidfoundation for rehabilitation, butsuccess also requires plannedprograms and activities. The patient,nurse, dietitian, social worker,nephrologist and family members alldevelop a patient's rehabilitation plan.As a starting point, many doctors usethe "5 E's" of rehabilitation as definedby the Life Options RehabilitationAdvisory Council (LORAC): Encourage-ment, Education, Exercise, Employ-ment and Evaluation. A comprehensiverehabilitation program will include

continued on page 8

Getting the right amount of dialysis is importantto your health.


The Doctor’s Role in Renal Rehabilitationby George A. Porter, MD, FACP

5


In this age of computers andadvanced technology, we have allrealized and enjoyed a new level of

independence. We no longer have towait for the mail to be deliveredbecause information can be faxed or e-mailed in an instant. We no longer haveto wait in long lines at the bankbecause we now have direct depositand ATMs. Such choices andconveniences are also available to therenal community. Individuals with EndStage Renal Disease now have choicesthat allow them independence as partof their rehabilitation.

To encourage independence, in-center self-care hemodialysis programsare increasingly being considered as atreatment option. The decision wasmade to establish a self-care programin my unit with the realization thatindividuals who dialyze in a homesetting have better expected outcomes,including fewer hospitalizations. Ourself-care program was established nineyears ago with great success and hasmaintained between 10 and 12 activeparticipants.

SETTING IT UP

We realized from the onset that forthe program to have a greater chance ofsuccess and survival, a separate areawould be needed to provide thenecessary training and treatment. Aroom was designated with six stationsand patients were given the option ofeither a morning or afternoon shift.One primary nurse partner wasassigned to each patient in order toprovide continuity of care and tosimulate a home-care setting with aone-on-one relationship.

To meet this program's expectations,the following steps were taken:

1. Policies and procedures wereadopted that allowed individualpatients to provide their own care.

2. A care plan was developed that setthe goals of the unit, the nurses'responsibilities, and patient accept-ance criteria and responsibilities.

3. A contract or agreement wasdeveloped to be signed by the nursesand patients. The signing of theagreement sets the stage for a jointeffort.

THE AGREEMENT

In the self-care setting, all tasks to beperformed by the participants are listedin the agreement to ensure that jobsare defined and all aspects of care arecompleted. Some of these responsibil-ities include gathering supplies,monitoring weights and vital signs,initiating, overseeing and terminatingthe dialysis treatment, completing allcharting and fluid removal. Self-venipuncture has remained optional,since it is dependent upon the accesstype and location. Some patients do notfeel comfortable with this task, but theyalways have the option to learn how.

SELLING THE IDEA

So why do self-care? To understandwhy, we simply asked patients whocurrently perform their own care. Thenewest member to our unit previouslyhad been on peritoneal dialysis. WhenPD was no longer an option and theneed for hemodialysis became evident,self-care seemed like the most logicalchoice to him. He could still functionindependently. Several others in theunit stated they had toured other in-center units, but the atmosphere in theself-care unit was what sold them ontrying this treatment option. Anotherreason was recommendations fromdoctors. Whatever the initial reason forundertaking this challenge, everyonewas in total agreement on theadvantages of self-care hemodialysis.

ADVANTAGES

Most patients agreed thatindependence was the primaryadvantage of self-care. Being able toperform the treatment tasks and makedecisions about their own care meant alot to them. One self-care participant ofmore than three years said, "It makesme feel better about myself that I'mable to do this on my own."

Another advantage to performing self-care dialysis is the educational aspect.In self-care, patients learn the how andwhy things are done, which helps topromote a positive learningatmosphere. This knowledge has inturn increased self-esteem and self-satisfaction, and has also decreased thefear of the unknown. "I not only learnedhow to perform dialysis, but it helpedme to learn how to take care of myselfat home," said another self-care patient.

The social setting is what has keptsome patients in self-care for years.Reminding, helping and encouragingeach other in a relaxed atmosphere hasbeen a positive experience for allparticipants in the self-care unit.

ACCENT THE POSITIVE

So what about the negative aspects or disadvantages of self-care? Onepatient noted that the only drawback is"having to clean up after myself." Thepositive aspects for patients and nursesdefinitely outweigh the negative. Fornurses, the ultimate reward is seeingpatients progress to independence andtake a leadership role.

Betty Murray is a registered nurse atDCI in Nashville, Tennessee.

Self Care—Being Independentby Betty Murray, RN

Teaching in-center patients how toperform their own treatments increasesconfidence and understanding.

FF


Correction: the correct author of

“Your Dialysis Nurse and Technician,”

Volume 8, Number 3, is Kimberly

Ward, BSN, RN, Corporate Clinical

Surveyor for Dialysis Clinic, Inc.,

Nashville, Tennessee.

6



Audrey Williams becamedepressed when she was diagnosed with polycystic

kidney disease in 1989. Her previousexperiences with family members ondialysis led her to believe that lifewould soon be over. Audrey’s motherhad polycystic kidney disease andwas on dialysis from 1971 to 1976.Her mother was the second patient inSouth Carolina to be on homedialysis, and when Audrey was inhigh school, she had helped herfather set up the machine for hermother’s treatments. Her aunt hadalso been on dialysis, and hergrandmother had nephritis. They hadall died by the time of Audrey’sdiagnosis.

Audrey was working as a seniorassociate county agent/homeeconomist at the time she requireddialysis. She had not been employedlong enough to be eligible forretirement and disability. She had towork. So, Audrey commuted 60 mileseach way to her job. Her supervisorworked with her so that she coulddialyze at the clinic near her home onTuesdays, Thursdays and Saturdays

and work in the local office after hertreatments. She commuted to herregular office on non-dialysis days.After one year of commuting, she wasable to transfer to the local office,which allowed her to spend more timewith her husband, Marshall, andtheir three young children, Philip,Wes and Jessica.

Audrey’s work involves developing,planning, conducting and evaluatingnew community programs in foodsand nutrition, home furnishing,clothing and textiles. She advises theFamily Community LeadersAssociation and teaches financialresource management. She works inthe evenings and on the weekends to

present these programs. The peoplewhere she works have been verysupportive, and because she worksextended hours, she does not have touse sick leave for her dialysistreatments.

In addition to her work, Audreyfinds time to sing in the church choirand work with the Wednesday nightsupper committee that prepares foodfor 150 people. She has alsocollaborated with her dietitian topresent a program called “Dining onDialysis” to professionals and fellowpatients. Additionally, she has writtenan article on food safety andpreparation, which was featured inthe National Kidney Foundation ofSouth Carolina’s newsletter, KidneyConnection.

Audrey looks forward to each day.Rather than dialysis being the end,working and dialysis have given herthe opportunity to stay involved andmake a difference in people’s lives.

Roxanne Poole, RD, is a dietitian atGambro Healthcare in Orangeburg,South Carolina.

Living to the Fullestby Roxanne Poole, RD

1/2 page ad

Audrey Williams and RoxannePoole at “Dining on Dialysis.”

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Exercise: Helping You Get Back to Your Lifeby David Miller, MS, and Susan Carey, MS

The goals of rehabilitation are toimprove your health and makeit easier to participate in

pleasurable and meaningfulactivities—or to improve your quality oflife. The renal community recognizesthat maintaining a good quality of life isjust as important as treatment forkidney patients. Physical fitness is animportant part of your quality of life.

Light-to-moderate physical activitydone on a regular basis can bringpositive results: greater strength,endurance and flexibility; better controlof blood pressure; decreased risk ofheart disease; and, possibly, decreasedlevels of depression or anxiety. Forthese reasons alone, increasing yourphysical activity is a good idea. You canachieve desired fitness levels bygradually increasing activities such aswalking, stretching and strengtheningexercises.

There are also more subtle benefitsthat come from increased fitness levels.Your life is not based upon how far youcan walk or how much weight you canlift. It is based upon family, friends, andpersonal goals or ambitions. Increasingyour levels of fitness allows you theenergy to participate in social activities.It also allows you to pursue personalinterests such as hobbies, returning towork or starting a new career.

Exercise truly helps to achieve thegoals of rehabilitation—empowering youto feel well enough to return to doingthe things you enjoy most. Participatingin regular exercise can build yourconfidence in your physical ability andgenerally boost your self-esteem. Itgives you a sense of control. Since onlyyou can actually do the exercise for

yourself, you have complete controlover this aspect of your health care.

Here are some recommendationsabout how to stay physically fit whileon dialysis:

Developing cardiovascular endurance

1. Type: Choose activities, such aswalking or biking, that use thelarge muscle groups for a prolongedperiod of time.

2. How often: Exercise at least threetimes per week. If you are only ableto exercise for a few minutes at atime, consider exercising severaltimes during the day.

3. How hard: The exercise intensityshould range from light tomoderate; exercise does not need tobe exhausting to be beneficial.

4. How long: Start with an exerciseduration that you are comfortablewith and gradually progress to 30minutes or longer.

Developing muscle strength

1. Type: Use light hand weights,resistance bands, weight machinesand household items, such as soupcans and detergent bottles.

2. How often: Select at least oneexercise for each major musclegroup; do the exercises at leastthree times per week.

3. How hard: Choose a weight orresistance that you can do at leastone set of 12-15 repetitions of eachexercise. Increase the resistancegradually as you get stronger.

Becoming physically fit is especiallyimportant if you are considering akidney transplant. Increased physicalfitness may allow you to tolerate thetransplant surgery more easily.Recovery from your transplant surgeryalso requires making a commitment togetting fit. Many of the same types ofphysical activities that you do while ondialysis, such as walking, stretchingand muscle strengthening exercises,will still be appropriate. If you don'texercise while you are on dialysis, takethe time to celebrate your new life withyour transplant by starting a regularphysical activity program. Exercisingafter transplantation may help prevent

muscle weakness and excessive weightgain, as well as improve the quality ofyour life. Talk to your physician or aphysical therapist if you are unsureabout what types of activities you cando safely.

Rehabilitation is achieved when yourlevel of physical fitness allows you tofeel well enough to pursue socialactivities and personal goals. If you areinterested in learning more aboutgetting started with an exerciseprogram to increase your fitness level,ask your health care providers for moreinformation.

Susan Carey, MS, is a clinical exercisephysiologist at the University ofCalifornia San Francisco Medical Center.

Editor's Note: TheNational KidneyFoundation's brochure"Staying Fit With KidneyDisease” can give moreinformation on the benefitsof exercise. To order a copy,call (800) 622-9010.

You may even be able to exercise whileundergoing treatment, which may prevent youfrom cramping or getting tired. Find out if yourfacility offers this option.


National KidneyFoundation®

Staying FitWith KidneyDisease

FF

ADA ad


8

This new addition to Family Focus will feature ways that renal patients have made

contributions to their communities as well as highlight significant individual accomplishments.

The National Kidney Foundation’s vision is Making Lives Better, and we’re proud to see that

others share this vision, too!

In recognition of National Kidney Month, over 200patients, staff, family and friends of South QueensDialysis Center in Jamaica, New York, gathered for aCelebration of Life Luncheon. Gloria C. Generette, patientcoordinator of the event, was honored with a proclamationfrom Councilman Archie Spigner and AssemblymanWilliam Scarborough for her hard work in organizing thisluncheon. She was also acknowledged for her desire to livelife to its fullest despite kidney disease. The mission of thiscelebration was to encourage our patients not to let thechanges they have to make in their lifestyles prevent themfrom leading full and productive lives. Also, the goal was toeducate family and friends about kidney disease.

Doris Francis, MS, RD, Jamaica, New York

This letter is to let you know that I recently receivedWorcester’s “key to the city” from the city’s mayor. This keyis awarded to people for community service. I believe thatmy volunteerism and pride in my neighborhoodcontributed to my receiving this award. My tremendouspride in the rich history of my neighborhood compelled meto try to keep it as clean as possible, even as the areachanged greatly over the years. I worked with the citygovernment to plan a revitalization project, which includedtennis courts. When the park was revitalized and thetennis courts installed, I volunteered to give group lessonsto children who lived in the neighborhood.

Mollie Yeaton, Worcester, Massachusetts

People usually do not look forward to Mondays. Peoplelook forward to coming to dialysis even less. But sinceJanuary 1997, Evelyn Pearlman has given patients atBeverly Hills Dialysis Center in Los Angeles something tolook forward to. Every Monday she has had “Evie’s TheaterParty” for the patients on her husband’s shift. She shows amovie and serves dietitian-approved refreshments. Thisgives the place an upbeat atmosphere, and the movieshelp time on dialysis pass much more quickly.

Ruth Sugerman, LCSW, ACSW, Los Angeles

Staff members at the South Queens Dialysis Centercelebrate life.

components from each of these fiveareas. 2

The National Kidney Foundation'sRISE Program (Rehabilitation, Infor-mation, Support and Empowerment) isdesigned to motivate patients to returnto meaningful activity, whether this isemployment, education, volunteering orother daily tasks. Participants in RISEwill gain knowledge and self-esteem and learn their rights andresponsibilities as they relate toaccessing treatment and other services.(See article on page 25 for moreinformation.)

Dialysis center rehabilitationprograms can be very effective, but therehabilitation-oriented doctor will takeadvantage of additional resources,including referrals to physical oroccupational therapists, vocational rehabilitation counselors, and exercisephysiologists or trainers.

Today, kidney patients, dialysiscenters and caregivers are recognizingthat rehabilitation is very important.The role of the doctor in rehabilitationis changing. Providing quality medicalcare will always be a top priority, ofcourse, but other responsibilities—suchas managing effective rehabilitation

activities—contribute significantly toimproving patients' quality of life.

References:

1. Rettig RA, Levinsky NG, eds. KidneyFailure and the Federal Govern-ment. Washington, DC: NationalAcademy Press, 1991.

2. Life Options RehabilitationProgram. Building Quality of Life: APractical Guide to RenalRehabilitation, 1997.

Dr. Porter is a professor of medicine inthe Division of Nephrology andHypertension, Department of Medicine,at Oregon Health Sciences University inPortland, Oregon.

The Doctor’s Role…T continued from page 4


Family Focus Spotlight

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10 Celebrating 10 years as the Renal Community’s Newspaper

The B

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Volume 4, Number 2

Adequate Dialysis: Your Rights and Responsibilities

by Wendy Brown, MD

As a person with chronickidney disease, you require regular dialysis

(either hemodialysis or peritonealdialysis), a special diet, certainmedicines and a positive,cooperative attitude to stayhealthy. You have a right toexcellent care from your doctorand nurses, and you have theresponsibility to take part in yourcare in a reliable manner. Thisdoes not mean that you cannotask why certain medicines have orhave not been prescribed or whyyour treatments last a certainamount of time. What ishappening to your body is yourbusiness and you have a right tohave your questions answered. Asa matter of fact, the more youknow about your treatments, yourmedicines and your diet, thebetter off you will be as a patient.

Who is the health care team?

A. As a dialysis patient, you arepart of a team that works togetherto make sure that you stayhealthy and active. In addition toyourself, the team includes yournephrologist (kidney doctor), yourdialysis nurse and technician, therenal dietitian, the renal socialworker, and your family and otherloved ones. Dialysis is notsomething that is done to you; it isa treatment in which you takepart. In order to receive the bestcare, you need to take someresponsibility.

What is adequate dialysis?

A. Adequate means enough. Inyour case enough dialysis is theamount needed so that you don'tget sick from the waste productsthat have built up in your bloodstream, or from fluid (water) thathas collected in your body. Wasteproducts and water normally endup in the urine when your kidneysare working. If you are notreceiving enough dialysis, you mayfeel tired or short of breath. Yourhealth care team can tell if you aregetting enough dialysis by lookingat a number of things. Theseinclude examining you and

listening to how you feel, andlooking at lab tests and X-rays.Your doctor will also use some ofthese things to figure out howmuch dialysis you need (this iscalled Urea Kinetic Modeling) andwhether you are well-nourishedand eating the right kinds andamounts of food. He or she willthen order a “dialysis prescrip-tion.” Your dialysis prescriptionconsists of such things as theamount of time you need to be ondialysis, the type of dialyzer, thetype of dialysate or dialyzing fluidthat is best for you and so on. Theamount and kind of dialysis thatyour doctor prescribes is exactlywhat you need and will probablynot be the same as what anotherpatient needs.

Why can't I stop dialysis a few minutes

early (or skip a CAPDexchange)?

A. Cheating, even a little bit,will add up and show up! Manypatients insist on stopping dialysisearly or skipping treatments, notfollowing their diet or not takingtheir medicines regularly. You mayseem to get away with these thingsfor a while, but eventually you willget in trouble. The trouble may beproblems with your heart becausepotassium is high in your blood,or problems with your bonesbecause you eat food high inphosphorus or don’t take yourcalcium. You might have baditching, cramps in your legs atnight or shortness of breath. Youmight get very sick and need tocome into the hospital or yourheart could stop. You might evendie, without any warning.

What are my rights as a patient?

A. You have a right to goodhealth care. You have a right to belistened to and evaluated whenyou have a problem. You have theright to know why certainmedicines have been ordered orwhy you need to follow a certaindiet. You have a right to know whyyour dialysis time has beenchanged. You have the right to

know what will happen to you ifyou don't have enough dialysis ortake your medicine regularly orfollow your diet. You have theright to know what all yourchoices are: whether hemodialysisor CAPD is better for you, orwhether you can have a trans-plant. You have the right to haveas much information as you needto understand what is happeningto you.

What are my responsibilities as

a patient?

A. You have the responsibilityto cooperate with your caregivers.You have the responsibility to takeyour medicines the way they areordered and to follow your diet.You have the responsibility toreport any unusual symptoms toyour doctor and to let him or herknow if your medicine looksdifferent (it could be the wrongpill!) or if you are feeling different.You have the responsibility to askquestions if you don't understandsomething. You have theresponsibility to come to dialysison time and to stay on dialysis foryour full treatment. You have theresponsibility to do as much asyou can for yourself.

Dialysis has come a long way. Itis a life-saving treatment for morethan 250,000 people in the UnitedStates and for more than a millionpeople in the world. Good dialysis,adequate dialysis, that allows youto function at your best with thefewest problems, requires apartnership between you and yourhealth care team. Be involved inyour care. Be a part of the team!

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NKF Family Focus

Will Spotlight Parenting

Editor's Note: Upcoming issues willspotlight Parenting and Putting a Face onKidney Disease. We invite readers andhealth care providers to submit theircontributions to the editorial board in c/othe National Kidney Foundation, 30 East33rd Street, New York, NY, 10016.


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Volume 8, Number 3

The roles of the dialysisnurses and patient caretechnicians are diverse

and evolve as the world of healthcare changes. As the patientcaregivers in the dialysis facility,the nurses and technicians havemany different roles. They aresupervisors, teachers, listeners,lab technicians, schedulers,machine technicians, performersof patient care, and anything elsethat they may need to bethroughout the day.

There are three types ofnursing/ technician personnelwho will perform direct patientcare for you while you are ondialysis. The registered nurse (RN)is an individual who has hadformal training from an accreditedschool of nursing. RNs mustcomplete the dialysis facility’straining program if they have hadno previous dialysis experience.The licensed practical nurse (LPN)is an individual who has beencertified from an accreditedlicensed practical nursing programand has also completed thedialysis facility’s training program.In some states, the LPN works as asenior dialysis technician (SDT).The patient care technician (PCT)is an individual who has a highschool diploma or generaleducation degree and may have sixmonths related experience in thehealth care field. The PCT mustalso complete the dialysis facility’straining program. Reuse ormachine technicians (also calledrenal technologists or technicians)work with the machine hard-wareor hemodialyzers and may betrained to provide direct patientcare as PCTs.

The role of each of thesecaregivers is different. The RN isresponsible for the day-to-dayoperation of the dialysis unit andsupervises the other employees inthe unit. RNs also work closelywith the physician to schedule procedures, exams andtreatments, etc. They are licensedto administer medications andblood if you need them while youare on dialysis, and generally arealso responsible for administeringIV medications, or medicationsthat go directly into thebloodstream. RNs assess your

physical condition to determine ifthere are any problems prior toyour dialysis treatment.

RNs initiate the long-term careplan, which is used to review themethods of dialysis that areavailable to you. Your RN shouldreview all treatments, includinghemodialysis, peritoneal dialysis,home hemo-dialysis and renaltransplantation, with you. Yourinput should be taken intoconsideration when choosing amethod of treatment. RNs areconsidered a “jack of all trades”when it comes to the dialysispatient. They are key players inthe education of your disease,access care, emergency drills, dietand fluid balance.

LPNs function in a role wherethey work very closely with thePCTs and any other unlicensedpersonnel. LPNs prepare, set upand monitor the patient,hemodialyzer and dialysismachine. They collect pre-, intra-and post- dialysis data, andmonitor you during your dialysistreatment. They draw any requiredblood samples needed forlaboratory tests, perform bloodglucose checks, and do anyadditional necessary lab tests thatcan be performed in the dialysisunit. In some states, withspecialized training, the LPN mayadminister specified IVmedications. These are generallythe routine medications youreceive while on dialysis, such asheparin, mannitol, calcitriol andEPO.

The LPN/SDT or RN can serve asyour primary nurse. The primarynurse is responsible for reviewingyour home medications on a

regular basis, and teaching youabout your medications and theirpurpose. He or she implements theshort-term care plan, whichidentifies any specific problemsyou may be experiencing andincludes ways to correct theseproblems. For example, if you arehaving a problem with high phos-phorus, the primary nurse will seta goal for you to reach by the nextmonth. This nurse will ask thedietitian to review your diet withyou and tell you which foods toavoid that are high in phosphorus.The LPN or SDT primary nursealso assists the RN with the long-term care plan in reviewing themethods of dialysis. LPNs are alsoessential in teaching you aboutdialysis and the things that areassociated with your dialysistreatments. They have an array ofduties to perform with you and thedialysis machines. Thesecaregivers are essential to qualitydialysis treatments.

The patient care technician(PCT) is considered more of a“hands-on” caregiver. PCTs set upthe dialysis machine, initiate,monitor and terminate yourdialysis treatment. They will put inyour dialysis needles, take yourvital signs while you are ondialysis, terminate your treatmentwhen it is over and set themachine up for the next patient. Inaddition, PCTs will aid the RN,LPN or SDT with the short-termcare plan, assessments, education,collecting blood specimens andperforming in-house laboratorytests such as glucose monitoring.They may complete monthlyassessments under the guidanceof the RN, LPN or SDT.

The RN, LPN, SDT, PCT andother health care team membersall have specific duties to perform,but they also work together as ateam. They will meet to reviewyour progress on a regular basisand will evaluate how well you areadjusting to your currenttreatment. We, the caregivers,would not be here if it were not foryou, the patients. Your input isalways welcome. You are a vitalelement to us, just as we are toyou. F

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Your Dialysis Nurse and Technicianby Deborah Brouwer, RN

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Dining for Special Occasionsby Julia Spitzfaden, MEd, RD, LD

For many of us, holidaysand other specialoccasions mean a time for

family, friends, love, laughter,gifts, parties, food, drink, andmore food. These are times whenpeople often reach out to others,providing the most precious gift ofall—love. Many times peopleexpress their love with the gift ofnourishment. To a personreceiving dialysis, this can be ablessing or it can turn out to beharmful.

Special occasions can be veryintimidating for someone on arenal diet, but it does NOT have tobe that way! With carefulconsideration by the host andcareful choices by the dialysispatient, it is certainly possible forthe host to prepare one meal forall, enabling the dialysis patient tostay within the dietary plan, feelwell, and enjoy all of thefestivities.

How a meal is presented can bejust as important as what adialysis patient eats. So manythings affect how we feel about thefood we eat. For instance, many

believe that we taste food onlywith our mouths. This is nottrue...our desire to eat is affectedby what we see, smell, taste andfeel. Dialysis patients and theirloved ones may want to try to make meal times special andpleasing in appearance not onlyfor special occasions but allthroughout the year.

The following are some of theways to make meals moreappealing.

✔ Serve a meal on a beautifullydecorated, candle-lit table andcreate an inviting ambiance!

✔ The colors of foods artisticallyarranged on a plate canenhance one's desire to eat. Acolorless meal may give theimpression of being bland, buta full plate of vibrant-looking

foods will be muchmore attractive

✔ The smell of foodsis certainly enoughto get our mouthswatering. However,keep in mind thatif someone feelsnauseated or

queasy, the smell of food canmake it worse. If this is yoursituation, it may be a goodidea to prepare coldsandwiches and colddishes—in fact, throw ablanket on the floor or in theyard and have a picnic.

✔ As anyone on a sodium-restricted diet will tell you,taste is very important! So,remember that spice rack inyour kitchen? Use it andexperiment with the herbsand spices; ask your dietitianfor a list of which spicescomplement which foods andwhich are acceptable.

As you can see, there are manyways to spice up the renal diet!You can also contact the NKF toorder a copy of the NKFpublication "Spice Up YourCooking" for further suggestionson how to enhance the renal dietwith spices and herbs. If you areon dialysis, or know someone whois, please remember that goodnutrition every day, as well asduring special occasions, willallow that person to have a betterquality of life. May you be able tocelebrate the gift of love with yourloved ones through the pleasur-able experience of eating together.Happy feasting!

Julia Spitzfaden, RD, LD, MEd, isa renal dietitian for Total RenalCare in Cincinnati, Ohio.


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Special Occasion Menu Tips

The following are special occasion menusuggestions that can be enjoyed by a person on arenal diet as well as the entire family:

� Entrees: roasted pork, beef, lamb, cornish hens, turkey, chicken

� Breads/Starches: buttered noodles and pasta, rice, dinner rolls, homemade bread stuffing

� Vegetables: green beans, wax beans, cauliflower, asparagus, beets, carrots, cabbage, eggplant, lettuce salad

� Condiments/Relish plate: celery, green pepper, carrots, radishes, cucumber, cranberry relish

� Beverages: (within the fluid allowance) tea, water, coffee, *7-Up, *Sprite, ginger ale, cranberry juice drinks, lemonade, limeade

� Desserts: pie (apple, peach, cherry, blueberry, strawberry or lemon), cookies (sugar, butter, spritz, shortbread), sherbet, fruit ice, angelfood cake

*Diabetics: use caution with sweets, limit theserving sizes, use sugar substitutes and dietbeverages. Angelfood cake can fit beautifully into aholiday theme as well as a diabetic diet.

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Midwest Nephrology Consultants, PCof Greater Kansas City, Missouri

and

Kansas City Dialysis

Blue Springs Dialysis

Penn Valley Dialysis

Independence dialysis

Lees Summit Dialysis

Leawood Dialysis

Congratulate National Kidney Foundation and

Family Focus on this 10th Milestone

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Preparing for a Transplantby Jenny Bell, BSN, RN, CNN, CCTC

Volume 5, Number 4

Transplantation is only one of the treatment options for kidney failure.Everyone who chooses transplant would like it to be successful for them. Hereare some simple ways to prepare yourself that will help ensure success.

Medical Preparation

Nutritional Preparation

� Following your dietaryrestrictions is extremelyimportant in maintainingyour general health.Keeping up adequateprotein values will make adifference in how well youheal and fight offinfections. Keeping yourfluid gain less than 2 kgbetween dialysis sessionswill help control yourblood pressure and keepyour heart muscle fromstretching out. Too high afluid gain can causepneumonia or pulmonaryedema. Potassium shouldbe kept within a normalrange. Levels that are toohigh or too low are lifethreatening.

� Maintain a healthyweight. Overweightpatients take on addedrisks with a transplant.There may be poor woundhealing, pneumonia, bloodclots, and delayed kidneyfunction. Obesity alsoincreases the likelihood ofgetting steroid-induceddiabetes after thetransplant. Anti-rejectionmedication will make itvery difficult to lose anyweight after thetransplant.

� Cholesterol levelsshould be kept below 200.Fifty percent of transplantpatients develop highcholesterol levels withinthree months after atransplant. (Handbook ofKidney Transplantation,ed. G. Danovich, pg. 183).High cholesterol levelscause strokes, heartattacks and clogged bloodvessels. This can result inthe loss of your kidney oryour life. Get into the habitof eating low-fat and high-fiber foods before thetransplant. Read labels tofind out fat contents.There are renal low-fatcookbooks available fromthe National KidneyFoundation. Ask yourrenal dietitian for help.

� Keep your doctor's appointments.Come with a list of any questions youmay have. Don't be afraid to ask"why."

� Run the entire prescribed time onhemodialysis, or if on PD, do all yourexchanges. Being underdialyzed willgive you less energy, more nausea,more nerve and heart damage. It willalso affect how well you heal aftertransplant.

� Take all your medications asprescribed. Do not take any folkremedies, extra vitamins or minerals,or over the counter drugs beforeconsulting with your nephrologist.These drugs could interfere with theabsorption of your prescription drugsor cause dangerous side effects. Thesedrugs may also interfere with theefficiency of the anti-rejection drugsafter a transplant.

If you cut corners and selfprescribe now, you get into amindset of not following directions.This can cost you your kidney.

� Blood pressure should be keptbelow 140/90. This may be animportant factor in maintaining the lifeof the transplanted kidney. Good bloodpressure control is also necessary topreserve the health of your heart andblood vessels.

� Diabetics need to get into thehabit of controlling their blood sugarlevels. Blood sugars that are too highor too low can harm your health andalso may shorten the life of thetransplanted kidney.

� Maintain the health of yourbones and tissue by keeping yourcalcium and phosphate balance.Prednisone that is usually given aftera transplant can weaken your bones.

� Hematocrits should bemaintained between 33 and 36 bytaking EPO and iron as prescribed.Diet and exercise will also help buildhematocrits. Blood transfusions canbuild antibodies, which may make itdifficult to find a kidney match. Thereis also the possibility of a transfusionreaction that can be very serious.

� Eliminate the focus of infection.It is generally suggested that if youhave infected kidneys, they beremoved before transplant. The sameis true if you have kidney stones orgallstones. Any infection after atransplant may threaten your life orthe life of the kidney as the anti-rejection medication makes it moredifficult to fight off infections.

� Read about transplants, talk topatients who have had successfultransplants and to those whosetransplants have failed.

� Contact your local NationalKidney Foundation affiliate for help.Go to the transplant support groups.Become a member of your local AAKP(American Association of KidneyPatients) and attend the meetings.Get involved with your renalcommunity. Most dialysis centershave a patients' bulletin board wherethese items are posted. Ask your

social worker about these activities ifyou cannot locate them yourself.

� Find out what's involved inhaving a kidney transplant, includingyour financial responsibility.

� Develop a positive attitude.Concentrate on what you can still do,not what you can't do.

There are no guarantees in having asuccessful transplant, but if youfollow these tips, you can help ensurethat you have done your part of theprocess.

Mental Preparation

Jenny Bell has been in nephrology a total of 18 years, as a renal transplantcoordinator for the past 10 years. Excerpts of this document are reprinted withpermission from an article Jenny wrote for Nephrology News and Issues (Nov.1994).

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Mr. Allan Kennedy hasworked in a variety ofclinical settings as a

physiotherapist. He is also alicensed professional counselor. Mr. Kennedy offers several views onstress and how it can be managed:

� The most basic point isthe strength of the body weare born with. The key is, thestronger the body, the morestress it can handle. That iswhy exercise is so important.

� Coping with stress alsodepends on how many majorinsults the body has to deal with,such as depression, divorce, drugor alcohol abuse. The greater thehistory, the less stress a person isable to cope with.

� Next comes control. We have nocontrol over people or over certainsituations. People starting dialysisor getting ready for a transplanthave little control, and that is scaryand causes stress.

� Perhaps the biggest factor thatcan determine how people deal withstress is their perception of an

event. Perception can change. Forexample, imagine you are on acrowded bus and someone keepsjabbing you. How do you feel?Angry. Stressed. You want to jabhim back. You turn around to gethim and you see an elderly blind

woman with a bag ofgroceries. How do you feelnow? You feel sorry for her.The stress is gone. Whathappened did not change,but the way you see theevent did.

� Stress happens quickly.We have to realize that if we aregoing to handle stress better, wehave to think about what happens.We have to ask ourselves why weare getting so angry, and what wecan do differently not to feelso stressed. It isn’t easy, butif we are honest withourselves it can be done.

� We have to realize thatwhatever we do affects otherfamily members. Althoughfamily members have not gonethrough the physical challenges,they also experience the emotional

stress of yourcondition.

Your stresslevel has alot to do withyourindividualoutlook andway ofcoping: Whatcan you doabout stress?Whatchanges canyou make?

� Talk about your feelings andestablish your core value. A corevalue is the four things you mostvalue in life listed in the order ofimportance. A powerful way tohandle stress is to think of it inrelation to your core value. Forexample, let me share mine withyou: 1-my wife, 2-my boys, 3-myfaith and 4-my job. Lets say I lostmy job and I let the stress fromthat take over my life. I shouldremind myself that if I lost my job,my wife will still love me, my boyswill love me, God won’t look downon me, and I can always getanother job. Now I can stay on aneven keel and not feel so stressed.

� Exercise is also important inhelping to deal with stress. That is

because exercise helps toimprove moods and feelings.Follow an exercise programyour physician hasapproved.

� Keep a diary. Whenpeople write down their

feelings, whether they are happy orsad, angry or content, they feelbetter after they are finished. Dothis each day.

� Keep your sense of humor.Humor is important in everyone’slife. Try to find something funny ineverything that happens.

These are ideas that will help you to lower your stress to amanageable level.

This article was adapted frompresentations at the 1994 U.S.Transplant Games Family FocusSymposia on Managing Stress andHow to Live with It.

What You Can Do To Cope With Stress

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