focusthat you are not perfect; you will make mistakes. you do have added pressures and challenges...

This publication is a Family Focus Program of the National Kidney Foundation and is made

possible in part through an educational grant from Amgen.

amilyocusFin this issue

VOLUME 9 NUMBER 4

The Renal Community’s Newspaper

K/DOQIpage 2

SEX AND KIDNEY DISEASEpage 4

GOOD NUTRITIONpage 6

LIVING WELLpage 7

THE MORE YOU KNOWpage 9

ADOPTION: A LOVING OPTIONpage 10

P A R E N T I N G

Playing in the yard, boundingthrough the door of my housewith several neighborhood kids

in tow, is the essence of many achildhood memory for me. If one ofthose kids was new to our home, theremight be a sudden stop in the actionfollowed by a "What’s that?" The "that"they referred to was my father’s dialysismachine. "Oh, it’s just a kidneymachine – it cleans my dad’s blood."Then, we’d all be off again, on to thenext adventure. Most of the time, lifewith my father’s end stage renal diseasewas simply that normal.

If you have recently been diagnosedwith kidney disease, "normal" isprobably the last word you wouldchoose to describe any facet of your life.In the initial painful phases, afterdiagnosis, there is that moment whenyou not only think your life is over, butyou feel a tremendous and

overwhelming sense of guilt that yourdisease will ruin your family’s life. WhileI did not have the disease myself, I amliving proof that children and familiescan adapt well to this disease. Evenwith kidney disease, you can definewhat "normal" is by your courage andactions.

Kidney disease poses specialchallenges for families, particularly inparenting. The sickness and fatigue, the

time spent on dialysis—added to thenormal stress of everyday life—areoverwhelming at times and often weighheavily on children.

“Because dialysis is so exhausting,and with all the pressures of trying tocontinue working full-time, my temperwas short and I raised my voice with mykids when I didn’t want to,” says JohnNewmann, PhD, MPH, kidney diseasehealth policy consultant, and long-termrenal patient. “But once I got past theinitial four-to-six months of depression,I was determined not to live a mediocrelife. I believe this disease gave me atremendous gift: a much-increasedappreciation for life and my kids."

One of the first steps to being a goodparent with kidney disease is makingsure you feel as healthy as possible, sothat you have the energy to give yourkids what they need. That means beingresponsible for your treatment, workingwith your medical team to find youroptimal dialysis level, following the dietand getting plenty of exercise.

A Family Like Any Otherby Jennifer Nix Leonard

��

“Kidney diseasesposes special

challenges for families,particularly in

parenting.”��

When you’re feeling better, you canfocus on what every parent shouldstrive for: healthy communication withyour kids. There is no absolute right orwrong way to handle telling kids aboutkidney disease and dialysis. You mustdecide for yourself what is best for yourkids. In John Newmann’s experience, asin my own, openly including the realityof dialysis did far more good than harm.

“Communicating with children isimportant because they undoubtedlyfeel the side effects of what their parentis going through with kidney disease,and they need to be able to askquestions and deal with their fears,”explains Rosa Rivera-Mizzoni, MSW,LCSW, a social worker and specialprojects coordinator for Renal Networks9 and 10.

According to Rivera-Mizzoni, youngchildren may see the dialysis machineas a kind of "blood-sucking vampirethat is hurting their mommy or daddy,"while older children tend to fear andresent it. Open communication aboutkidney disease creates a healthierfoundation for children to continuetalking through rough times. It isimportant to validate their changingfeelings about the disease. If they stop

continued on page 3

National KidneyFoundation®

WHAT DOES PARENTING &

KIDNEY DISEASE MEAN TO YOU?

Jennifer, second from right, with her dad, Wayne, mom Sharon, and sister Kathy.

2

Family Focus Volume 9 Number 4

Many of you who are ondialysis are aware of theNational Kidney

Foundation’s initial efforts to improvethe standard of your dialysis care withthe development of the NKF-DialysisOutcomes Quality Initiative (NKF-DOQI). These guidelines were originallypublished in 1997 and arerecommendations for health careproviders to follow in order to meet ahigh quality of care that is best for you.A new set of guidelines is beingdeveloped which will encompass theoriginal DOQI guidelines, but areexpected to include patients at allstages of kidney disease, including pre-dialysis. It is called Kidney DiseaseOutcomes Quality Initiative or K/DOQI.

K/DOQI’s goal is to establishguidelines that would include people atthe earliest stage of kidney dysfunction,as well as those with overt kidneyfailure. It will involve the active role ofall members of your health care team,paying special attention to the primarycare physician. A primary carephysician is important because he or

she is often the first person you seewhen you feel ill and is in a uniqueposition to become involved in thepreventive treatment for anyoneshowing early symptoms of kidneydysfunction.

Recent data from the Third NationalHealth and Nutrition ExaminationSurvey (NHANES III), estimates thatapproximately 12 million Americans

have an elevated serum creatinine, anearly indicator of reduced kidneyfunction. That means that someone

you know could be in the early stagesof kidney failure and would benefitfrom quality care that will berecommended in upcoming K/DOQIguidelines.

The first clinical practice guidelinereleased under the K/DOQI banner inJune 2000 was the Clinical PracticeGuidelines for Nutrition in ChronicRenal Failure. In addition, the originalDOQI guidelines have been revisitedand updated and are expected to beavailable to your health care providerslater this year. You can expect otherguidelines to follow over the next threeyears that will look at heart disease,bone disease, blood pressure,cholesterol and their relation to kidneydisease. It is important that you playan active role in your care, and you cando that by keeping yourself informed ofthe changes and updates available toyou and your health care team. Moreinformation on K/DOQI is available byvisiting our web site at www.kdoqi.orgor ask your health care provider formore details.

NKF Family Focus is published quarterly by the National KidneyFoundation

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

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

Kansas City, MO

Medical Editor: Fitness Editor:Wendy W. Brown, MD David Miller, MS St. Louis, MO San Francisco, CA

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

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: Bina George

Design Director: Oumaya Abi-Saab Production Manager: Marilyn Lara

FF

Are we missingyou?

We’d like to make sure that NKF Family

Focus is making its way to every dialysis

unit and transplant center in the country.

If we’re missing anyone, or if you would

like to receive a copy at your home,

please let us know by dropping us a note

or by giving us a call at (800) 622-9010.

K/DOQI and You


3

talking, look for indicators such aschanges in behavior and sleepingpatterns, or grades suddenly dropping.

Your social worker can help you faceyour kidney disease diagnosis and aidyour children as well. Your kids canvisit your dialysis unit, or if homehemodialysis is the best alternative foryour lifestyle, home visits by your socialworker are an option. The NationalKidney Foundation has educationalvideos for children of all ages. You maychoose to seek professional counselingat some particularly difficult stages asmy family did. The key is knowing helpis out there and seeking it out.

“What you’ve got to realize is thatkids are tremendously resilient— theycan take almost anything if they arebrought into the circle,” says Rivera-Mizzoni.

One important realization to reach isthat the disease should not define yourrelationship with your kids. Kids needto have parts of their lives that aren’ttouched by kidney disease—everythingfrom playtime, to help with homework,to punishment when they get out ofline. Dialysis shouldn’t be an excuse foryou to pass the buck to a spouse or tojust let things slide.

I saw my dad strive to keep kidneydisease in its place in all of these ways.We traded the dinner table for dinnersin the den, while Dad ran on themachine. He taught and coachedfootball, and came to my basketball andvolleyball games. He took us campingall over the country. He played goofyDad-jokes on Saturday mornings. Herode me hard about grades and did notshy away from discipline. He also losthis temper and wasn’t always "Mr.Wonderful." But, whose father is?

At the age my father was during hisfirst year of dialysis, I can tell you that Ibelieved his renal failure, and the wayhe and my mother dealt with it, showedme the meaning of strength, commit-ment, and love. I call that a far cry fromruining my life.

My father died this past December,but he lived with kidney failure for 27years—17 of them on dialysis, 10 witha transplant. He outlived several of thedoctors who told him back in 1973 thathe probably had only six months to live.At the time, my sister, Kathy, was

three, and I was six years old. Instead,he was around to see both hisdaughters get married. He got to see agrandchild born into our family. He andmy mother had found a beautiful island

in Lake Michigan where they liked tospend their summers. He also saw his idea for how to help improve the lives ofall people with kidney disease spreadacross the country—the NKFRehabilitation, Information, Support &Empowerment (RISE) program.

My father, Wayne Nix, provided awonderful example of how to rise aboveadversity, and he knew he had lived hislife to the fullest.

Your kidneys may have failed, but itis still your life to live, your example toset for your kids—and most important,your love to give and receive. Acceptthat you are not perfect; you will makemistakes. You do have added pressuresand challenges with kidney disease.You will be exhausted, sick andoverwhelmed at times. You willprobably be a grump and yell quiteoften. But you will also be here to seeyour kids grow up, and you will bethere for them when they need you.And, that’s as normal a life as anyonecan ask for. F

F

A Family Like Any Othercontinued from page 1

COVER STORY

Wayne Nix

NKF’s Patient and Family Council Invites You To Join Us In 2001 For

“Knowledge, Choice, Control”

One-day educational, inspirational andempowering programs for

• dialysis patients • donor families • transplant recipients

January 20 Salt Lake City, UtahApril 21 Orlando, FloridaSeptember 8 New Orleans, Louisiana

� Mark Your calendars for these excitingupcoming events!

For more information contact the National KidneyFoundation at (800) 622-9010 or visit us at www.kidney.org


4

Sex and Kidney Diseaseby Wendy Weinstock Brown, MD, MPH

Celebrated in song and movies,love and physical intimacy arean important part of life and

human relationships. Coping withchronic illness is never easy. Copingwith chronic illness while trying tomaintain a normal and fulfillingrelationship is frustrating, particularlywhen the topics are sex, impotence,infertility and loss of desire. Manypatients are reluctant to discusssexual problems with their doctor orother caregiver—it is uncomfortableand embarrassing. Some caregiversare also embarrassed to talk aboutthese sensitive topics. However, it isessential to discuss these issues withsomeone (kidney doctor, nurse, socialworker) who is knowledgeable aboutkidney disease and medicines and canhelp you look for solutions to help youenjoy all aspects of life fully.

❤❤ DESIRE AND PHYSICAL CLOSENESS

First, remember that you are notalone. More than half of kidneypatients, both men and women, haveless interest in sex after diagnosis.Others are interested, but don’t findsex and closeness as satisfying as theydid before they had kidney disease.About half of men with chronic kidneyfailure have trouble having or main-taining an erection. Sometimes there isa physical cause—kidney disease cancause fatigue or nausea, depressionand changes in sex hormone levels.Other causes include anemia or ashortage of certain vitamins orminerals in the body. Medicines,particularly those used to treat highblood pressure, can affect sexualfunction, as can certain diseases suchas diabetes or hardening of thearteries. Patients who performperitoneal dialysis may be embar-rassed that they have a tube in theirabdomen.

❤❤ WHAT HAS HAPPENED TO MY BODY?

There are changes in sex hormonelevels in men and women with chronickidney disease, even before they needdialysis. For example, men make less

testosterone, the “male” sex hormone.Most men with chronic kidney diseasemake less sperm, and most cannotfather a child. They may also notice anincrease in the size of their breasts.

Women with kidney disease alsohave changes in hormone levels. Manywomen stop menstruating by the timethey start dialysis. Some haveincreased or decreased blood loss.Although most women on dialysis nolonger release an egg each month andcannot become pregnant, it is stillimportant to discuss contraceptionwith your doctor. Pregnancy can occurin a dialysis patient, even when apatient hasn’t had a period for manyyears. However, pregnancy while ondialysis is very rare. There areincreased risks for the pregnantdialysis patient and for the baby. Morepremature babies, stillbirths andmiscarriages occur in women withkidney disease than without. However,with increased dialysis and specializedcare, healthy babies have been born todialysis patients.

❤❤ WHAT CAN I DO?

Even before you talk to your care-giver about your worries, there aresome things YOU can do that mayhelp.❤ Make sure you don’t skip or

shorten dialysis treatments.Inadequate dialysis is a veryimportant cause of decreaseddesire and impotence

❤ If you smoke, stop smoking—it cancause or aggravate impotence

❤ Avoid alcohol—it can causeimpotence

❤ Discuss concerns about yourchange in appearance with yourpartner—you are likely to discoverthat any differences bother youmore than your partner

❤ If you have diabetes, make sureyour blood sugar is well controlled

❤ If you have high blood pressure,make sure it is well controlled.

❤❤ WHAT CAN MY DOCTOR DO?

Your doctor will begin with a carefulreview of your medical history, lab

values and current medication. He orshe may refer you to a specialist (aurologist for men, a gynecologist forwomen) who will take a sexual historyand do a physical examination, andmay order various tests. Treatment ofsexual problems in both men andwomen with renal disease mayinclude:❤ A change in blood pressure

medicines or other medication❤ Increasing your blood count❤ Vitamins or minerals❤ Hormone therapy❤ Evaluating and treating of

depression❤ Better control of calcium and

phosphorous levels❤ Referral to a psychologist or

marriage counselor

Depending on the cause, treatment ofimpotence in men with kidney diseasemay include:

• Medication• Insertion or injection of

medication into the penis• Vacuum/pump devices• Surgery

Treatment of women with sexualproblems may include:

• Estrogen creams• Lubricants

❤❤ WILL THINGS CHANGE IF I GET A KIDNEY TRANSPLANT?

Most patients, both men andwomen, experience a significantimprovement in their sex life afterreceiving a kidney transplant. It is alsoimportant to remember that for mostpatients fertility is also restored. If youdon’t want to have a child at thispoint, you need to discusscontraception with your doctor.

(Thanks to Charles Slaughter,hemodialysis patient at St. Louis VAMedical Center, for his assistance onthis article.

1. Cole Porter, Cole Porter Songbook, disc 2,1928. From the show, Paris, sung by EllaFitzgerald.

FF

Parenting

Birds do it, bees do itEven educated fleas do it

Let’s do it, let’s fall in love!` 1

5


At the age of five, my kidneysfailed.

At that point my life changed forever.Once my kidneys shut down, my lifewas full of hospitalizations. There weretimes when I’d be in the hospital formonths. I was very sick and wentthrough a lot of pain. Doctors werehesitant to treat me at that stage of myillness. They sent me to Yale NewHaven Hospital. Once I arrived at Yale,I was started on hemodialysis. Backthen dialysis wasn’t very advanced andI had many problems dialyzing.

I was lucky enough to receive atransplant, but the kidney neverworked to its full potential. Each time Istarted to reject it, I was pumped full ofsteroids. The steroids stunted mygrowth very early. After three and ahalf years, my body rejected the kidney.I thought the transplant would makemy life easier, but that was not the casewith me.

Through all the times of illness andthe many problems I faced, my familyalways provided comfort and support.My mom and dad did everything intheir power to make my life worthliving. When I found out that I wasgoing to have a brother, I was happy.Even though I was very sick at thetime, the excitement of having a newbrother made me focus less on myillness. My brother arrived in 1974.

A few years later, I received a second kidney transplant donated by mymother. I was 10 years old. Many tripsto the hospital followed and after threeyears, that kidney rejected as well.

Today, I am a 30 years old. I havebeen on dialysis for almost 12 years.I’ve done very well on hemodialysis andhope for continued success.

One constant challenge that I’vefaced while on dialysis is a battle withmy calcium and phosphorus levels.Many dialysis patients face this issue.

My phosphorus level has been verydifficult to control. I originally startedwith a low calcium level that increasedmy parathyroid level. It required me tohave a parathyroidectomy. (Theparathyroid glands are responsible forregulating the calcium and phosphoruslevels in the blood through theparathyroid hormone (PTH). Low bloodcalcium levels cause an increase in thePTH levels. A parathyroidectomy is apartial removal of the parathyroid glandto assist in lowering PTH levels).Dialysis patients must work to controlthese levels in their blood.

After my parathyroidectomy, I hadthe opposite effect than was expected.It became even more difficult to controlmy calcium and phosphorus levels. Itwas a challenge for me to deal with thedietary phosphorus restrictions. I didnot always do what I was told.

It wasn’t until I finally made up mymind to get this problem under control,that I beganto succeed. Ifollowedthree stepsto controlmy levels.The firststep beganwith mydietitian.Using herguidanceand infor-mation, I goton the righttrack withmy diet. Dairy products and chocolatewere the most difficult to limit. Thenext step was to take my phosphatebinders. Following the diet is one thing,but if you don’t take the binders, thewhole process doesn’t work. The thirdstep was to increase my activity level tohelp with bone strength; I started awater aerobic class and a light weighttraining program that has beenprovided through my dialysis unit.

My phosphorus level has improvedgreatly. For all the dialysis patientsout there who may be having the samechallenges I did, there is hope. Justlook to your resources and alwayskeep your head up!

Up & Down: Balancing Calcium, Phosphorus and Life with Kidney Disease

by Steven Sirois

CC AA RR TT OO OO NN

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RR

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RR by Ray Osrin, retired editorial cartoonist of Ohio’s The Plain Dealer.

Steven Sirois is keepinghis head up!

FF


6

When you have a child with achronic illness such askidney disease you and

your family are faced with increaseddemands and stresses. Meeting yourown needs as a family and thespecial needs of your childoften involve unplannedchallenges. Frequently,one of those challenges isdealing with either dietrestrictions or specialdiet needs. Whether yourgoal is to restrictpotassium, limit salt, orincrease calories, changingeating habits is not easy.

The first step is to learn andunderstand your child’s specific dietneeds. Your renal dietitian can be yourguide. Then, depending on your child’sage, include him or her in theexplanation of those special diet needs.Even young children can learn basicguidelines and be motivated tocooperate. Older children can sharethe responsibility for following a diet,but should not be solely responsibleuntil later teen years.

Since eating is a social andemotional behavior as well as the wayto provide nourishment for our bodies,any special diet recommendationsneed to be a part of your regularroutine and life. Cooperation andsupport from all family members(parents, step parents, brothers,sisters, and grandparents), as well asfriends and school personnel arenecessary. Not only will your child whoneeds the diet be more accepting of hisor her situation, but it will make familylife more pleasant.

Siblings might not understand theneed for a diet or even the chronicillness itself. They may feel abandonedor resentful of what they see as specialattention for the "sick" child. Differentor extra food preparations can makethem jealous. Sometimes favoritesnacks or foods that aren’t permittedon the special diet will need to be givenup by siblings. At other times, childrenon the special diet will need tounderstand when brothers and sisterseat a food that they cannot eat. Youcan also include special, inexpensivenon-food treats when a child is feelingleft out.

As a parent, you need to let thechildren in your family know that theyare all different, but each special in hisor her own way. By involving them inthe special diet process, you can teachthem the importance of the diet and

how to be supportive of eachother. Brothers, sisters, andgrandparents can helpshop for foods, read labels,cook and serve meals orsnacks. Siblings can evenmake the special diet thesubject of a scienceproject.

Another way to make a specialdiet more acceptable is to frequentlyserve foods that are allowable foreveryone. Through education and thesupport of each other, families canhappily balance the diet and nutritionneeds of everyone.

The child who won’t or can’t eatenough for good growth poses anotherchallenge. Many children with kidneydisease have this problem. Some havepoor feeding skills due to long hospital-izations or dependence on feedingtubes. Other children have swallowingdifficulties or problems with reflux.Still others may just be "picky eaters."Whatever the reason, feeding problemscan be a great frustration for families.

Before tackling feeding problems,be sure that the possiblemedical causes have beenaddressed. Studies onspeech and swallowing,occupational therapy, andlaboratory test checks fornutrient deficiencies can behelpful in identifying specificproblems.

Many infants and young children,plus some older children, need tubefeedings to get in enough calories tothrive and grow. While these tubefeedings provide adequate calories, theissue of non-feeding remains. Familiesstruggle trying to get children to eat.Your renal dietitian can help youchoose foods that are high in caloriesand learn how to add calories toregular meals. By using "calorie dense"foods, you can add calories withoutincreasing the amounts of food yourchild needs to eat. The behaviormodification techniques which followcan also be helpful.

As parents, you need to agree withyour child on some feeding and eatingrules. You are responsible for providinghealthy meals that are appropriate foryou child’s age and specific diet. Yourchild is responsible for eating. Youcannot force eating!

You and others in your family shouldtry to be examples for good eating andacceptable table manners. While itmay be difficult to do so in our busy,fast-paced world, it is best to eat mealstogether at the table. Distractions suchas television, toys and books duringmeals are not recommended.

Most of all, ignore food refusals andreinforce eating. That doesn’t meanthat food is a reward. You should notbribe or reward your child to eat. Don’tbe afraid to set limits. It is notnecessary to be a short order cook,either. Offer foods that are beingserved to the entire family.Occasionally, when foods are too spicyor too fancy, it is okay to offer simple,easy-to-prepare substitutions.

All children in your family, eventoddlers, can help with foodpreparation and setting the table. Theycan also have some choice in the foodsthat are served. Offer new foods one ata time and with favorites. Be sure togive the right size servings for your

child’s age (usually about onetablespoon of each food per year ofage for young children). By

involving children with themeals, you can makemealtime a pleasant andpositive experience.

Check with your renal dietitian for more

information on special diets or forinformation about children who arepoor eaters. You may also find thefollowing books to be helpful:

Why Can’t I Eat That! Helping KidsObey Medical Diets. John F. Taylorand R. Sharon Latta; R & EPublishers, Saratoga, CA.

Poor Eaters. Helping Children WhoRefuse to Eat. Joel Macht; PlenumPress, New York.

How to Get Your Kid to Eat… But NotToo Much. Ellyn Satter; BullPublishing, Palo Alto, CA.

The Challenge of Feeding Kids with Kidney Diseaseby Charlotte Stall, MA, RD

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Good Nutrition

7


Being a parent can be one of themost wonderful, yet difficultjobs in the world. From the

moment of birth, parents have theawesome responsibility of decision-making, which continues until thatinfant reaches adulthood. Raising aphysically healthy child is toughenough. But when your child suffersfrom kidney disease, the role of parenttakes on a whole new dimension.

The age at which a child is diagnosedwith kidney disease has a great impacton how parents cope with a chronicillness in the family. Parents of aninfant, especially first-time parents,may feel particularly overwhelmed. Notonly are they trying to becomeacquainted with their infant, but theymust also learn about their child’sillness. Often, parents may be at a loss,feeling they have nothing to offer theirinfant. Doctors and nurses areproviding necessary medical care andthere is no clear cut role for them asparents. The truth is that only Momand Dad can provide the physicalcloseness, love and bonding that achild needs in the first few weeks of life.

If the child is diagnosed with kidneydisease during the pre-school years,separation from parents is a majorissue. Children view their parents asprotectors, but illness, hospitalizationsand necessary medical treatmentscause some separation from parents. Atthis age, it is difficult for parents andchildren to be apart. Yet, if otherchildren need care at home and theparents have work responsibilities,these separations are inevitable. It canbe difficult to soothe and explain these

absences to a chronically ill child. Butin most families, some separationoccurs.

A new dimension of responsibility isadded for the parents of a school agechild with kidney disease. It becomestheir job to educate teachers and otherstaff about the child’s condition as wellas any special educational needs.Parents become advocates to ensurethat there is no disruption in theeducational process, althoughattendance may be disrupted due toillness, hospitalizations, surgeries, etc.

Children in the pre-teen andadolescent stage of life typically becomemore independent from parents. Theybecome more capable of making theirown decisions. Parents struggle withtheir wish to keep “holding on” to theirsick child or encouraging indepen-dence. Regardless of age, all parentswant to protect their children. Achronic illness only reinforces theirdesire to shield the child from potentialsadness or suffering. But adolescenceis a time of testing and breaking awayfrom parental ties. A chronic illness willmake it difficult to move towardindependence and result in anger froma teen with kidney disease.

Parenting never ends, even whenchildren are adults with their ownfamilies. Older parents of adultchildren may still experience the samereactions as younger parents when itcomes to the well-being of their childwith kidney disease. A parent’s desireto nurture, soothe and protect iscommon, even when the kidney diseasepatient is well into adulthood.

Being the parent of a kidney diseasepatient can often be a lonely and scaryexperience. Some parents feel ostra-cized by their peers who show concern,but are often unsure about how toexpress themselves. Kidney disease canbecome the focus of the whole familyand result in a limited social lifeoutside the hospital or clinic setting.

What helps parents of kidney diseasepatients? First, parents need to feel thatthey are competent. They need to feelsome control over a difficult situation.Some ways to increase this feeling ofcompetence include talking to medicalstaff and experts in the field of kidneydisease, reading and attending parents’groups.

The social worker can be invaluableto parents, particularly in times ofmedical crisis. He or she can help toexplain what the child is experiencingin a clear, simple way. Parents can beshown what to expect during thenatural course of their child’s care.Remember, the social worker canidentify resources that can help thefamily cope.

Ask questions, seek out caregivers,and look for support. Regardless ofyour child’s age or medical condition,remember that help is available to youas parents. The more you are able tocope with your child’s illness, the moreyou will be able to support your childon his kidney disease journey.

(Thanks to Evelyn Corsini, MSW, for herconsultation and collaboration on thisarticle).

When Your Child Is Diagnosed With Kidney Diseaseby Jean Carosella, LCSW, ACSW

FF

MAIL BOX

When I first started dialysis, I was only 22 years old. It’s been almost

13 years. After some time on dialysis, I began reading Family Focus.

Before I began reading your newspaper, I would often get depressed

and feel sorry for myself. Then I would read the articles in Family Focus.

I’d gain new hope and confidence in myself when I read about other

dialysis patients going through the same things. They were working and

excelling in life!

Please continue to publish Family Focus. It has been a great

inspiration to me. It motivated me to find work as a part-time secretary

and volunteer as a driver for our department of human resources.

Family Focus and the staff at the Monroeville Dialysis Center deserve

thanks for their dedication and support over the years.

Minnie Henry

L I V I N G W E L LL I V I N G W E L L

Dear Editor,

I am writing this letter to express my appreciation for the article inFamily Focus Special Edition on “How to Read and Understand Your LabValues” by Wayne Nix. I have been on dialysis for over seven and a halfyears and this is the first time I have really understood the lab values. Ifound that the definitions of the many terms and abbreviations used inmonthly lab reports will be very helpful in my review of the lab reportswith my nephrologist and the dialysis center dietitian. I especially likedthe sample Dialysis Report Card. The blank card furnished as an insertin the Family Focus newsletter will certainly assist all of us hemodialysispatients to keep a record of the lab reports and assist each of us inadjusting our schedules and diets to achieve our goals and we hope,prolong our lives. That is the ultimate goal of all kidney disease patients.Please continue to send a copy of Family Focus to me. I like it and findall the material to be very informative and helpful.

Thank you,

John B. Mc Govern

8


A Very Tough Balancing Actby Deborah Brouwer, RN, CNN

Parenting

Raising a family is the hardest,yet most rewarding role for any of us to fill. To balance

the treatment requirements of achronic illness and the role as anactive family member must beespecially difficult.

I became a nurse because I wantedto help others in the battle againstchronic illness. Caregivers understandall of the stress a chronic illnessplaces on a person and the entirefamily and can be a source of greatassistance. This article givessuggestions to help you talk about theissues with your caregivers so you canfind a way to balance the role as aparent or grandparent with therole of the dialysis patient.

Your family needs to comefirst, but not at the risk ofyour health. What does thatmean? You need to select a typeof dialysis and schedule that will workfor you and your family.

� Peritoneal Dialysis (PD) can allowfor the maximum freedom. There arevarious forms of PD. The PD nurse oryour nephrologist can explain thedifferences. PD can be an option atany time. Ask your nephrologist tomake sure you do not have anymedical reasons that would limit PDas one of your options.

� Home Hemodialysis might be anoption for you and your family. Youneed space in your home for thedialysis equipment with a proper watersource. A caregiver within your homecan be your dialysis partner. You canlearn how to set up the dialysismachine and assist with most of theprocedure, but you need a partner tohelp assist and supervise the dialysistreatment. This may be a good choicefor working families because dialysiscan be done in the evening at home.

� In-Center Hemodialysis is themost common option for kidneydisease patients. You will need to talkwith your dialysis nurse, social workerand nephrologist about treatmentissues that cause hardship to you andyour family.

Often, the most difficult issue is thedialysis schedule. You need to explore

scheduling options. If you work, youwill need to adjust a dialysis schedulethat will permit you to continueworking. Not all centers offer multipleshifts. You may need to transfer toanother unit that offers various shifts.It is your health and you must takethe primary responsibility by taking anactive part in your care. Talk withyour center’s staff to work out detailsso you can receive the best carepossible. If you need to change yourdialysis schedule for special events,like a child or grandchild’s activity,you need to talk with the dialysis staffas far in advance as possible. Manydialysis units are full, with no open

dialysis chairs. Another dialysispatient may need to switchschedules to allow you todialyze at a different time orday.

What is most important isnot to skip or cut treatments

short. Your dialysis is only for a fewhours a week, so even 15 minutesmissed is a large percent of yourtreatment time. Your kidneysfunctioned every minute of every day(about 10,080 minutes) — nowdialysis tries to do the same job in 9-15 hours a week. Every minute oftreatment time is important to yourhealth. Cutting off minutes can endup cutting off days of your life andmake the days you have be days onwhich you don’t feel well.

The balancing act is to feel well, takethe best care of yourself and still havetime to spend with your family. It isimportant to your family that you’re ashealthy as possible so your timetogether can be focused on having funand creating life-long memories. Talkto your family about the stress theyfeel from your illness. Sometimes itseems that everyone is being selfish,but that is often a front to hide thetrue concerns and fears that a chronicdisease creates. We all fear the loss ofhealth and lifestyle. When an illnessoccurs we need to pull together toovercome the problems. Hope is a keyfactor. Talk about what gives you hopeand strength with your family andcaregivers.

In this busy world it may seem likeno one wants to hear about your

problems—so try to talk about yourfeelings in a way that allows people tohelp. Be specific about yourhardships. Ask your dietitianquestions. Explain, for example, thatthe renal diet is hard for you becauseyour family likes to go out to eat atrestaurants or fast food places to savetime. Ask what you can do about it.Talk about make-ahead meals.Explain to loved ones that you’re justtoo tired when you get home to helpcare for the kids.

Talk with your dialysis nurse,nephrologist and social worker. Youmay be tired for several reasons. Yourhematocrit may be low. You may haveside effects from your blood pressureor heart medication. Considerchanging to a different medication. Ifyou have low blood pressure (hypoten-sion) following treatment, yourmedications or dry weight might needto be adjusted. Excessive weight gainsbetween treatments are another causeof fatigue because of the extra fluidremoval that is needed during dialysis.You may need to have longertreatments to provide for better fluidremoval and clearance of wasteproducts. Often, resolving the issuesof dialysis requires teamwork. Youneed to be part of the team.

What I have learned in my own life’sexperience with illness is that youcannot do it alone. You need yourfamily and they need you. Talk openlywith your health care providers andfamily about issues that concern you.Remember that your nurses, socialworkers, dietitians and doctors mayhave had many different reasons forbecoming health care providers, butthey all share the same goal now—tohelp kidney disease patients live ashealthy and happy as possible. Helpbalance your life! Keep your faith andfamily as your strength. Mostimportantly, enjoy each day with yourfamily. It is a gift that has to betreasured. F

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

Being the parent of a child witha chronic illness or being achronically ill parent does not

have to present a challenge to findactivities in which you can participate.Many people with a chronic illnesssuch as kidney diseaseoften feel that theycannot maintain anormal life and enjoydaily activities thatenhance personalgrowth.

Although there may be limits to theactivities that a kidney patient canengage in, there are manyopportunities available for patientsand their families. One excellentopportunity is camps thataccommodate people with kidneydisease. There are camps specificallyfor children with kidney disease, aswell as camps that provide activitiesfor the entire family.

Kidney Camp can be a chance forpeople affected by the emotional,financial and physical challenges ofkidney disease to develop a supportsystem. It is a great opportunity forchildren, adults and families tocultivate new learning and livingexperiences. It is a unique way forpeople to explore different areas ofinterest while developing new skills,making new friends andhaving fun. There areopportunities for enhancingsocial, athletic, language,reading, gross motor, coping,and independent living skills,which can in turn enhanceself-esteem. Not every campoffers all of theseopportunities, but byunderstanding your needsand those of your child and family,you can equip yourself with the rightinformation to choose the camp that isright for everyone.

Many camps take place during thesummer, but there are other campsthat have sessions at different times ofthe year. There are day and sleep-

away camps. Most camps areequipped with professional counselingand medical staff, and some provideon-site dialysis or transportation to adialysis facility nearby. One of themany considerations in choosing a

camp is cost. Many campsoffer financial assistance orscholarships. Additionalfinancial support may beobtained through someNational Kidney Foundation(NKF) affiliates.

Here are some things to keep inmind as you begin looking for acamp:

Know that you have the right toask questions.

Know what you or the camper wantout of the camp experience.

Know the specific areas of interestthe camper would like to improve.

Know the potential camper’spersonality.

Know what type of camp will bestsuit the camper (day or residential/sleep over).

Involve the camper in the decision-making process.

Things you may want to askabout:

The camp’s philosophy.

The criteria for choosingcampers.

The qualifications of thedirector and staff.

The make-up of theprofessional staff(counselors, therapists, etc.).

The ratio of professional staff tocampers.

The availability of medical staff andfacilities.

The procedures for administeringmedications.

The provisions for dietary needs.

Safety procedures.

The cost — funding, assistance,scholarships, payment plans.

Camp transportation.

Camp setting — sleepingarrangements, tents, cabins’bathroom/shower facilities, etc.

The types of activities offered, andwhether they vary by age group,abilities, interest, etc.

How the individual needs of thecampers are addressed.

The procedure for handlingbehavioral/disciplinary problems.

Anything else that will help you inchoosing the right camp for youand your family.

To obtain information about a campin your area that accommodatesdialysis patients or kidney transplantrecipients, you may contact theNational Kidney Foundation at 800-622-9010 for a copy of its annualKidney Camp Directory, or your localNKF affiliate. Your social worker mayalso have information about localcamps. F

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Explore New Opportunities at Kidney Camp


10

Adoption: A Loving Optionby Fred M. Kouri, LMSW

Parenting

Adoption is a loving option formany couples who experience infertility or uncertainty

about the likelihood of having anotherchild with a chronic illness. Followingis information on the different types ofadoption, the adoption process, theimpact on families and resources andsteps to take if you are interested inadoption.

WHAT IS ADOPTION?

Adoption is alegal process bywhich a parentand childrelationship isestablishedbetweenindividuals whoare not otherwiserelated. There arethree sets ofparticipants in anadoption: adoptiveparents who areseeking to adoptthe child, the childto be adopted, andthe natural parents of the child who isto be adopted (birth parents). Not onlydoes the adoption create a new legalrelationship between the adoptiveparents and the child, but it alsoterminates any legal relationshipexisting between the child and thebirth parents. Therefore, it is asignificant legal, social, emotional andfinancial step for all parties involved.

WHAT ARE “CLOSED” AND “OPEN” ADOPTIONS?

A closed adoption means that thereis very limited information about birthparents and adoptive parents beforethe adoption, and no personal orwritten contact between the child andbirth parents afterwards. It isgenerally felt that completely closedadoptions are not in the best interestof the child unless there are safety orspecific legal concerns. Some degree ofopenness is seen as being positive tohelp children know his or her birthhistory and reasons for the choicesmade by the birth and adoptiveparents.

An open adoption means that somepersonal and family information isshared between birth and adoptiveparents and there may be somecontact between the child and birthparent(s) after the adoption iscomplete. There are varying degrees ofopenness with adoption, and mostadoptions today include some sharedinformation before birth and limitedcontact through pictures and lettersafter the adoption is complete.

WHAT ARE THE DIFFERENT TYPES OF ADOPTIONS?

Five differenttypes of adoption(listed below) canoccur between birthparents andadoptive parents.The process, costsand philosophy canvary significantlyamong these types.Anyone assistingwith any type of

adoption should have a state licenseto provide this service. Prospectiveparents are encouraged to talk withothers and the state licensing bureaubefore proceeding with the adoptionprocess.

� Relative Adoption:

A family member legally adoptsanother member of the family. In themost common relative adoption, astepparent seeks to adopt a childor children of his or her currentspouse (also referred to as step-parent adoption). The secondmost common type ofrelative adoption isbetween grandparentsand grandchildren.

� Agency Adoption:

An individual or couple signs upwith an agency to assist with allaspects of the adoption process.Agencies are usually private, not-for-profit, or religiously affiliated and canbe found in the yellow pages or the

Internet under "adoption." An agencyadoption can be either open or closed.

� Private Adoption:

Typically, involves a social workerand attorney who arrange theadoption based on a process that isagreed upon by both the birth andprospective adoptive parents. Privateadoptions are generally open.

� State Adoption:

The local child protection or welfareprogram identifies a child in statecustody who is eligible for adoption.Usually there is financial assistanceavailable for the costs of adoption andongoing expenses if the child hasspecial needs.

� International Adoption:

Adoption of a child from anothercounty requires the assistance of askilled and respected agency withcontacts and expertise in the countrythe prospective parents areconsidering adopting from. Becausethe political climate in some regions ofthe world can change abruptly,research about the agency andcountry before traveling abroad toadopt is imperative.

THE PERSONAL SIDE OF ADOPTION

Choosing to pursue adoption can bean emotional process that is filled with

mixed feelings. There isfrequently a feeling of sadnessabout the inability or choice

not to give birth but a joythat comes with thepossibility of parenting.Within the Transplant andDialysis Program atChildren's Mercy Hospital

in Kansas City, Missouri,there are a number of families

who have participated in the adoptionexperience. While each story isunique, they have all involved caringfor a child on dialysis or with a kidneytransplant.

continued on page 11

(L to R) Hannah Marie Kouri (age 16months) and Leah Catherine Kouri (age 4 1/2 years).


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Michael’s Story:

Shortly after birth, it was learnedthat Michael needed dialysis. His birthparents were unable to cope with thatsituation. Having been abandoned byhis parents, Michael was adopted by aloving couple who nurtured and lovedhim as only parents are able to do.Michael’s adoptive parents learnedhow to do home peritoneal dialysis.Five years ago, he received a kidneytransplant at age 6. Michael’s adoptivemother reflects that raising a childwith end-stage renal disease (kidneydisease) has been a tremendousblessing and she would not hesitate toadopt another child just like Michael.

Megan’s Story:

Megan was born with oxalosis, acongenital defect of the metabolicsystem that causes oxalate to depositin the kidneys and elsewhere in thebody. Oxalosis eventually leads tokidney failure. She has undergone twokidney and two liver transplants.Megan’s parents pursued adoption ofher sister after Megan turned 9 andthey are just now adjusting to thesleepless nights of a 5-month-olddaughter. Megan’s dad talks about thedifferences in dealing with "normalbaby girl problems" as opposed toMegan’s early episodes of peritionitis,medications and hospitalizations. "It isan adjustment to just allow her tocrawl freely on the floor, get prolongedbaths and just explore her worldwithout worrying about harming thecatheter. There is plenty of love forMegan and her sister."

Raymond’s Story

Raymond was adopted by hisgrandparents after a kidney transplantand is now living with his siblings insouthern Missouri. This adoption wasa difficult process for the entire familyand counseling was necessary to helpeveryone adjust. Being abandoned by parents as a young child can havelong-term effects, making counselingessential for all parties involved.

At a recent clinic, one of our foster parents (who has two adopted specialneeds children and a 1-year-old fosterchild on peritoneal dialysis) told methat she gets very angry when peoplesay that special needs children are"unadoptable." She said that it is nosecret that it takes the commitment ofthe entire family and support from themedical team, but that the joys exceedthe challenges of caring for a childwith kidney disease.

✏ ARE YOU THINKING ABOUT ADOPTION?

If you are, here are somesuggestions that may make

the process easier.

� Meet with acounselor or socialworker about your

readiness to adopt.

� Do your homework aboutadoption by looking on the Internet(see recommended web sites) andreading adoption handbooks andarticles.

� Talk with other individuals andcouples who have adopted.

� Attend a meeting of parents whohave adopted children.

� Contact your state licensingagency to see who is an approvedprovider of adoption services for yourstate.

� Interview agencies, social workersand attorneys before you commit toworking with them.

� Stay organized. There are reamsof paperwork and documentation, andyou need a system to stay organizedthrough the process.

� Set a budget. You may find ithelpful to talk with a financial plannerabout paying for adoption expensesand your eligibility for state andfederal tax credits for adoption.

� Make adoption a family decisionby talking with immediate andextended family members.

� Last, seek the support of yourfriends. This is a process you need toshare with others.

MY FINAL THOUGHTS:

Adoption has changed the lives ofmy wife and me with the addition ofour daughters, Leah and Hannah. Wefeel so blessed to have such wonderfuland loving children. Although alladoptions have unique challenges,adopting a child, especially one withspecial needs, is sure to result inmany lifelong rewards. F

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Parenting

Adoption: A Loving Optioncontinued from page 10

WEB SITES ON ADOPTION:

www.adopting.comComplete adoption resource site.

www.adopting.orgGeneral overview of adoption and resources.

www.adoptionguide.comAdvocacy for families adopting nationally and internationally.

www.adoptivefam.orgEstablished in 1966, an excellent resource for getting started.

www.wendys.com/community/adoption/foundation

The Dave Thomas Foundation (Thomas is the founder Wendys)supports adoption through education and employee benefit reforms

to cover adoption costs.

12

National Kidney Foundation30 East 33rd StreetNew York, NY 10016

CCOORRNNEERR

P O E T R Y P O E T R Y

Whose machine is this? I think I knowIt saved the life of a man I also knowIt will never see how much I careto watch a life appear from nowhere

The big house in which it daredto stop the heartache and my fearBetween his skin and frozen painAll the long nights and suffering remain

He tried all he could, but nothing workedSince he was little, it always irked.We all thought it was gonna be easy

Baxter would hum and then it would whirlIt did its night’s job in spite of the hurtIt all worked and felt like clockworkBut it took a lot of team work

Baxterby Kristen Dana

For her father, Jim DanaDialysis is a machine that keeps us alive.You can’t miss treatments or you can die.

Arteries remove the blood from the body to be cleaned,Veins return blood to the body; it flows like a stream

We either have a catheter or a graft in our arm.It sounds pretty awful, but don’t be alarmed.

Two needles with tubes connect us to the machine,That’s how the blood gets ready to be cleaned.

Reuse Technicians wash the dialyzers to make sure they are safe,

They also fix our machines when they break

Doctors come visit us, "Hello, how are you?"They give us a medical report and tell us what we

should do

The Nurse Practitioner comes to see us, tooShe does the same things the doctors do.

The Secretary’s job is to make sure things run smooth,She does this for the staff and also for you

The Administrator gets many things done,He solves our complaints, one by one.

If you need to talk to someone at sometime,See the Social Worker; He will ease your mind.

The Dietitian tells us what food we should eat,All of us, I’m sure, sometimes cheat.

We all get sick on the machine, at times;Nurses give us hypertonicsTechnicians say, "You’ll be fine."

Carmela DeLuca is a dialysis patient.

Dialysisby Carmela DeLuca

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Chamberlain

focusthat you are not perfect; you will make mistakes. you do have added pressures and challenges...

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