A publication of the Foundation HAPPY ANNIVERSARY … · NURSING EDITOR: Sally Burrows-Hudson, MS,...

Family Focus Honors a Tradition of Helping PeopleAffected by Chronic Kidney Disease

By John Davis, CEO, National Kidney Foundation

Believe it or not, that is anexcerpt from an article I wrote15 years ago for the very firstissue of Family Focus. It ishard to believe that 15 yearshave passed since a very dedi-cated group of volunteersplanned that first issue. As weprepared for this anniversaryissue, we looked through thearchives and found file folderslabeled “Patient and FamilyNewsletter Volume 1, Number1” filled with handwrittennotes with article ideas andnewsletter concepts jotted onyellow legal pads!

A beloved National KidneyFoundation (NKF) volunteer,the late Wayne Nix, sharedhis personal philosophy withus: “Dialyze to live, don’t liveto dialyze.” That really said itall. Kidney disease should notand cannot be allowed to takeover the life of a person withkidney disease. With this inmind, Family Focus hasstrived to bring you what webelieve to be the most relevantand important informationyou need to be an informed,effective advocate for yourown health care.

Family Focus has always beenabout sharing. Sharing sto-ries, poems, recipes, exercises,coping tips, news about med-ical advances and more, all inan effort to improve your over-all quality of life. Whether youare someone on dialysis orhave a kidney transplant,Family Focus has featuredarticles of interest to all.

We all know that a chronic ill-ness does not only affect theperson who is ill. Each familymember is also affected insome way, so Family Focus

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

and is made possible through an educational grant from .

30 East 33rd Street

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H a p p y 1 5 t h A n n i v e r s a r y

Continued on page 3

HAPPYANNIVERSARY

FamilyFocus

Issue 1, Volume 1 ofFamily Focus

5th Anniversary Issue ofFamily Focus

10th Anniversary Issue ofFamily Focus

A publication of the National Kidney

Foundation

Vol 15, No 1Winter 2006

OVER THE PAST FEW YEARS, THENATIONAL KIDNEY FOUNDATIONHAS HAD A PHILOSOPHY of creat-

ing and implementing specific and targetedprograms which fill a specific need. While our

general widespread programs remain in place,we are working to establish high quality andeffective programs designed to make a particu-lar difference in one aspect of our cause.

NEXT ISSUELife Planning

WHEN THE IDEA FORFAMILY FOCUS WAS

BORN, THE CONCEPT WASTHAT IT SHOULD BE THEKIDNEY COMMUNITY'SNEWSPAPER. For 15 yearsit has been exactly that. Ithas grown from the seed of anidea to a circulation of approx-imately 335,000, read by peo-ple throughout the UnitedStates and beyond its borders.From the beginning, FamilyFocus has sought to providetimely information about top-ics that the Editorial Boardbelieved to be of great impor-tance and relevance to peoplewho are on dialysis and thosewho are important to them.

Many individuals have con-tributed to its success over theyears. Nancy Spinozzi was its

first editorand she andher EditorialBoard mem-bers werevisionaries asthey devel-oped FamilyFocus in its earlyyears. TheNationalKidneyFoundation has always beenthe home for Family Focus,and the newspaper would notexist if not for the tirelessdedication and devotion ofmany of its staff.

Amgen has been the solesponsor of Family Focussince its inception and the company's support has been

immenselyvaluable.Lastly, I, too,have had theprivilege ofworking withvery talented,hardworkingindividualswho haveserved annu-ally on theEditorial

Board. Thanks to each andevery one of you for all youhave contributed to the suc-cess of this newspaperthrough the years. It has pro-vided an invaluable serviceand will continue to do so formany years to come.

Family Focus is all about you,the person who is on dialysis,and your family and friends.Thus, it is only fitting thatthis anniversary issue isdevoted to the articles andpoems that you have given us.We are privileged to receiveyour heartfelt contributionsthroughout the year and areproud to be able to showcasethem. Thank you for sharingthem with us. It is our hopethat they will inspire and

touch our many readers asthey have us.

The Editorial Board is veryexcited about the themesselected for the upcomingissues of Family Focus. Thespring issue will focus on lifeplanning, specifically how tobalance your life and plan forthe future. The horrendousimpact of Hurricane Katrinaon all in its path, includingthe special issues faced bythose people on dialysis,emphasizes the importance ofthe topic, disaster prepared-ness, selected for the summerissue. Quality issues will bethe theme for fall, and dia-betes, the greatest contributorto chronic kidney disease, willbe the focus for 2007's firstissue. If you have experiencesor ideas to share about any ofthese topics, please let ushear from you.

Happy 15th Anniversary,Family Focus!

Karren King, MSW, ACSW, LCSW

For the Editorial Board

2 FAMILY FOCUS • Volume 15, Number 1

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

FITNESS EDITOR: Patricia L. Gordon, RN, PhDSan Francisco, CA

MEDICAL EDITOR: Wendy W. Brown, MD, Nashville, TNNURSING EDITOR: Sally Burrows-Hudson, MS, RN, CNN

Sunnyvale, CANUTRITION EDITOR: Lori Fedje, RD, LD, Portland, OR

PATIENT EDITOR: David Jones, Glen Ellyn, ILPEDIATRIC EDITOR: Barbara Fivush, MD, Baltimore, MD

SOCIAL WORK EDITOR: Mary Beth Callahan, ACSW/LMSW-ACPDallas, TX

TRANSPLANT EDITOR: Nancy Swick, RN, BSN, CCTCSanta Rosa, CA

ESRD NETWORK LIAISON: Kimberly Thompson, RN, BSN, CNNKansas City, MO

EDITORIAL OFFICE: NATIONAL KIDNEY FOUNDATION30 E. 33rd Street, New York, NY 10016800-622-9010 • 212-889-2210www.kidney.orgE-mail: [email protected]

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

VICE PRESIDENT OF HEALTH POLICY AND RESEARCH: Dolph Chianchiano, JD, MPA

EXECUTIVE EDITOR: Sara Kosowsky MANAGING EDITOR: Helen Packard

PRODUCTION DIRECTOR: Sunil VyasDESIGN DIRECTOR: Oumaya Abi Saab

NKF Family Focus is published quarterlyby the National Kidney Foundation.

Opinions expressed in this newspaper donot necessarily represent the position of

the National Kidney Foundation.

H a p p y 1 5 t h A n n i v e r s a r y F a m i l y F o c u s

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

Karren King

Dear Editor,

Family Focus is a wonderful publication. It is also

very helpful. I have been doing my home treatment for

a month now, and I must tell you I feel 10 years

younger. I am 77 years old, my balance is better and I

feel so cleaned out. I can't thank the federal govern-

ment enough. I am in such a good state of mind. I

can't thank you all enough.

God Bless you all.

Howard Shaw

Bay Pines, FL

FAMILY FOCUS • Volume 15, Number 1 3

has always included stories and articlesby and for them as well.

Patient Services is one of our highest pri-orities. At the NKF, Affiliate and Chapterlevels, the NKF provides a wide array ofeffective services to the millions of peoplewho are afflicted with kidney and urinarytract diseases.

Our commitment to the needs of thepatient is just as strong as it was when Iwrote those words 15 years ago. The NKFhas always been dedicated to providingeducation and assistance to those withchronic kidney disease (CKD) and theirfamilies. It is one of our major goal areas.Over the years we have constantly chal-lenged ourselves to create useful, valuable

programs to aid people affected by CKDand their family members. We have host-ed live programs, printed countless dis-ease specific brochures and fact sheetsand offered complimentary membershipin the Patient and Family Council (a ben-efit of which is Family Focus.) Last year,in an effort to strengthen and unify thevoices of the more than 20 million peoplewith CKD, the NKF established “People

Like Us,” a movement to educate, empow-er and enable patients to become effectiveadvocates on issues related to their healthcare. Since its May 2005 launch, “PeopleLike Us” members have given input onpublic policy and other issues, met withand written letters to their members ofCongress and presented a proclamation toU.S. Department of Health and HumanServices Secretary Michael Leavitt for-mally thanking the government for pro-viding dialysis and other life-savingtreatments to thousands for more than 30years through Medicare’s End StageRenal Disease (ESRD) program.

Recognizing that kidney disease is muchmore common than people realize, espe-cially among those who have often-ignored risk factors, NKF created theKidney Early Evaluation Program(KEEP), a free health screening programfor people at increased risk of developingkidney disease. The program raisesawareness about CKD among high riskindividuals and provides free testing andeducational information to help prevent ordelay kidney disease and its complica-tions.

Another anniversary we recently celebrated was the 10th anniversary ofthe Kidney Disease Outcomes QualityInitiative (KDOQI). KDOQI creates evi-dence-based clinical practice guidelines toimprove patient outcomes. By using theKDOQI Guidelines in their practice,health care providers are able to providetheir CKD patients with evidence-basedcare for all five stages of CKD.

As a result of these two initiatives, NKFcreated the Kidney Learning System(KLS) to put the knowledge gainedthrough KEEP and KDOQI into practice.KLS promotes CKD awareness and provides education to the public and tohealth care professionals to make theKDOQI evidence-based clinical practiceguidelines available to improve patientoutcomes.

As we begin the next 15 years of FamilyFocus, changes are taking place allaround us—some positive, some not. Butthe more things change, the more theystay the same. The patient still is at thecore of all we do. For this reason we feltthat the most appropriate way to honor amilestone anniversary was to devote theissue to reader submissions. The nextissue will contain the columns you havecome to rely on and look forward to, butfor this issue, we wanted to hear fromyou. We hope that you enjoy reading these personal stories and poems as muchas we did.

I want to take this opportunity to thankKarren King, the current editor of FamilyFocus, Nancy Spinozzi, the first editor ofFamily Focus, and their entire editorialboards. These dedicated volunteers havedevoted countless hours of their personaltime to produce the kidney community'snewspaper. Thank you as well to NKFstaff members Gigi Politoski, SaraKosowsky, Sheila Weiner, Helen Packardand Oumaya Abi Saab for giving so muchof their time, energy and creativity to thisnewspaper. The combination of volunteerand staff talent and dedication to thispublication is what makes it the incredi-ble resource it is and will continue to be.

Happy Anniversary.


Family Focus Honors…Continued from page 1

Family Focus

is available on the Web.To find this issue or back

issues of the newspaper go to

www.readfamilyfocus.org

Family Focus now



Poetry SectionWashington RKC

By Robert Smith

Washington R K CWhat it means to me.

When I first came for treatmentIt was a scary sight to see

There were sick looking peopleAll around the room

Some were covered with blanketsSeemed a room filled with gloom

There were beepers and alarmsGoing off all the time everywhere

If I would have had a choiceI would have been out of there

But I was so sickI had no choice but to be there

So I walked to a machineAnd sat down in the chair

After they got me hooked upThings soon began to calm down

I was more able to relaxAnd take a better look around

I began to visitWith the people sitting near

I found they were all really niceThey just happened to be stuck here

One special friend God gave meSo he wouldn't die alone

If I ever make it to heavenWe will visit again, Jerome

The workers are all wonderfulAlways hurrying here and thereBut they make time to give us

The most excellent of care.

�R K C #2

They make sure your dialysisIs done safely and right

But they do so much, much moreThey are in my prayers each night

They help you with your troublesThey listen when you are sad

They laugh and joke with us allMakes you forget what's so bad

Dialysis is hard, hard workFor all the people involvedIt seems a bittersweet task

That is possible to hate and love

But each treatment keeps me aliveAnd makes me feel much betterSo with my brand new familyThree times a week we gather.

Robert Smith receives his dialysis in Washington, IN.

��

��

��

Sharing LoveBy Anna Davis

The love we extendWill bring content-ment to ourselves

in the end.Sometimes, some people

just won't bend.Maybe, we can start

a new trend.When part of ourselves

we extend.We might even make a

new friend.

After a Heart is BrokenBy Anna Davis

After a heart is broken,these words are quietly

spoken:“I can give myself only

so far,My heart has no room to

be further broken.”

Ms. Davis receives her dialysis in Portland, OR.



More Poetry

To My BuddiesBy Stella Varian Ramos

A word of comfortTo my buddies on dialysis;

We have to have this for lifeSo to deny it is useless.

Let us therefore focus our mindsOn the benefits we get;

Don't think of it as a trapOne that we would like to forget.

Remember that these procedures Prolong our dear lives;

We continue living, wives with their husbands.Or husbands with their wives.

I specially mention the seniorsBecause they are usually the human faction

Who has to undergo this treatmentDue to failing human functions.

Never mind the several tripsTo the clinic or hospital “caves”;It is nothing compared to the pleasures it allows

Of being with family, friends, or relatives.

Just refrain from eating certain foodsAnd be within the liquid intake ordered;

Do not lift heavy objectsWith the arm where needles get inserted.

We are put on earth by GodFor certain things to be accomplished;

So, if we get sick and the mission is not finishedHe made man think of dialysis.

The Next ChapterBy Ted Pacheco

As I close one chapter in my bookI start a new one with a different look.For you see, things are no longer fine—

I live my life connected by a line,A tubing which has become my life support

Without it, it could be my death report.I am connected to a kidney machine every

nightIt keeps me going so I can see tomorrow's

light.Not knowing what might happen next

I pray just hoping for the best.Some say you've been given a second chance

to fightSo it's up to you to make your world just

right.So instead of living life in the future

I think I'll sit back and let this one nurture.So as I look forward and write the new pages

to my bookMaybe when the next chapter begins, I won't

be connected by this hook.

A New BeginningBy Ted Pacheco

I thought the flame had gone out frommy candle,

And there were times I wished I were dead.Then I almost died, and how I begged

for life instead.I thought about giving up and putting

life to restBut that would have been a mistake

For I found out that I am truly blessed.Though I have lost a few friends

I have now gained a couple dozen others—In fact you can say I adopted a new family

And their friendship is like no other.Some say they’re just doing their jobs

But I surely know betterFor they know and remember more about

Me than just my name.Moving on would have been real easy but

staying is a lot more pleasing.Life will always have its ups and downs

and can be tough to handle,But with my new friends it looks much

brighterFor they’ve given me hope, if one candle

burns outIt's okay, go ahead and light up another.

Mr. Pacheco receives his dialysis in Casper, WY.

Ms. Ramos is 87 years old. She receives her dialysis in San Francisco, CA.


Completely freaked outScared and alone

I came to this placeI’ve learned as a second home

Scared and lonelyI didn't want it to beBut as time went by

It got to be easy.

But not for myselfFrom the kindness of you

My spirits were liftedAnd then I wasn't so blue.

Each of youIn your own little way

Impact my lifeEach and every day.

From Me to YouBy Jessica Watson

Jessica dialyzes in Fall River, MA.

I come here every other dayTo this place called DCA,

To say that I like it would be a lieBut without it, I would surely die.

For it's at DCAThat they help me to live another day,

Maybe a little longerAnd maybe help me to feel a little stronger.

The doctors, nurses and all the rest are all very fineFor they give me some of their precious time,

They all do all they know how to doSo I can feel like living all anew.

They all greet me with a smile.And they never forget to say hi,

They all are so loving and so kind, tooEven if I have to come every other day

I thank Him for the doctors, nurses, patients and all the restFor they all are the very best.

I thank God, for these people who have touched my lifeAnd I thank Him for letting them put up with me for awhile,

I love and appreciate all that they doAnd I want them to know that I love them, too.

Ms. Moody receives her dialysis in Valdosta, GA.

A Day at the DCABy Emma Moody

�

More Poetry

F a m i l y F o c u s V O I C E S

WE LOVE TO HEAR FROM OUR READERS, so every issue of Family Focus includes a special question.

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

What have you done or are planning to do to prepare yourself for a disaster such as a hurricane, flood, or other emergency situation to ensure that your health needs are met?

You may visit the Web site above to share your thoughts, or send your response by April 1, 2006 in writing to:

Family Focus Voices30 East 33rd StreetNew York, NY 10016




Neither rain nor snow nor dark of nightcan keep me from my dialysis sight

I go pretending it is springNot knowing what my treatment will bring.

I walk up to the big glass doorsThe girls inside are doing their chores

I say hello to those I knowI guess we all are in the same boat

We're on our machines and some will sleepAnd pray to God our souls will keep

Then when we’re finished, we're on our way To dialyze another day.

Another Day in DialysisBy Esther Burgess

Ms. Burgess dialyzes in Logan, WV.

I woke up this morning feeling goodI really never ever thought I would

Feel this way, especially on treatment day.So here I go to the center. Thought I'd have

a snack and go to sleep, you see,But dialysis took the feel good out of me.

Well they hooked me up, everything was finedidn't have a worry on my mind.

Snuggled up in my blanketand was almost fast asleep.

I sat up suddenly, and there was no doubt,something was wrong, so I let out a shout—

Dialysis took the feel good out of me.The nurses fixed me up fast

I didn't know they could do it.But that's my story,

And I'm sticking to it.Dialysis put the feel good back in me.

I Feel GoodBy Esther Burgess

�

The National Kidney Foundation (NKF) and more than 35 other groupsjoined together to form the Kidney Medicare Drugs Awareness andEducation Initiative. Our goal is to produce timely, reliable and up-to-datematerials to inform people with chronic kidney disease, families and profes-sionals about Medicare Part D. Four new booklets are part of this effort: ■ What You Should Know About Medicare Prescription Drug Coverage

(Part D) If You Have Chronic Kidney Disease

■ What You Should Know About Medicare Prescription Drug Coverage(Part D) If You Are Undergoing In-Center Hemodialysis

■ What You Should Know About Medicare Prescription Drug Coverage(Part D) If You Are Undergoing Home Hemodialysis or PeritonealDialysis

■ What You Should Know About Medicare Prescription Drug Coverage(Part D) If You Have a Kidney Transplant.

To find these booklets, go to the Kidney Medicare Drugs Awareness andEducation Initiative Web site at www.kidneydrugcoverage.org. For aprinted copy, call the National office at (800) 622-9010.

To help you compare Medicare Part D plans, check out the ComparePrescription Drug Plans packet on the Web site. Look under Patients andFamilies for Compare Drug Plans. You will find a packet of tools thatincludes: a tip sheet, frequently asked questions and two charts to help youlearn if the drugs you need are covered by a specific Medicare Part D plan.Plus, you will find out how to do your own search using 800-MEDICAREand www.medicare.gov.

Sign up on our Web site to learn about new resources and activities relatedto Part D. When you do, you will receive an e-mail about our new 40 factsheets on Medicare Part D. If you have chronic kidney disease, are on in-center hemodialysis, home hemodialysis or peritoneal dialysis, or have akidney transplant, there is a fact sheet for you on how Part D works if youhave:

■■ Medicare only■■ Medicare and Medicaid ■■ Medicare Advantage plan■■ Medigap drug coverage ■■ Employer, union or COBRA drug coverage■■ Limited income and resources■■ SSI or state help paying Medicare premiums ■■ TRICARE, VA, Federal Employees Health Benefit, or Indian Health

drug coverage■■ Other help for drugs (state kidney program, state pharmacy assis-

tance program, drug card, etc.)■■ You live in a nursing home or other long-term care residence

We want you to have the facts you need to make the best decision for youabout Medicare Part D. If you decide you need Medicare Part D, we wantto assist you in choosing the plan that will help you afford the drugs youneed to live a long, healthy and enriched life.

CONFUSED ABOUT MEDICARE PART D? Here’s Some New Information for You

Beth Witten, MSW, ACSW, LSCSWMedicare Modernization Program ManagerNational Kidney Foundation, Inc. More Poetry



Poetry

Being on the kidney machineis not much fun. It is something

that must be done.

The sitting is very long.While sitting there I might sing a song.

Sometimes I will even read a bookor at the TV I will look.

We can talk to each other whilewe are there or out the window I might

stare.Sometimes we might take a nap.

When it is cold I might bring a wrap.Sometimes we bring a snack to

pass the time away.But on the kidney machine Imust stay to see another day.

Ms. Butler is on dialysis inRoxboro, NC.

A Day on the Kidney MachineBy Carrie Butler

Floating through tubes back andforth, back and forth,it's amazing and cool

to watch my bloodflowing so smoothly.Some say it's a deathsentence, others don't

understand; this is a life-giving process to further

our big plan,to be a part of the solution

for the renal failure revolutionIt may appear being on this

machine would cause much fear,but for a dialysis patientit's urgently necessary

to be here.Some people will never see how

important their healthcan be; just look

at me.I'm still here after several years,

over time I stop my tears,so let the treatment begin.

We welcome you to a life-long friend.

DialysisBy Thomas Strickland

Cherish this walk down this hall,thank them all, today

we come and go, standingtall, don't be sad nor feelsorrow. This treatment isto ensure our tomorrow

Be we weak or strong, thestaff here keeps our lives

moving on. Praise the staff,thank the nurses. The care they

give is for us to live, we'reall in this together.

Smile a while. Things will get better.

Consider other people's feelings. Don'tforget about our friends.

A pleasant day here you'll spend.

Thank you, thank you, thosekind words could makesomeone's day; it's so

easy to say.

This is so simple. Do whatyour doctor says, you'll live

a longer, joyful life.Refuse, you'll pay the

price.

SensitivityBy Thomas Strickland

I am loaded with potassium, like anenemy lurking at night.

Oh! How those french friesare a lovely sight,

Sitting there next to that juicyhamburger calling my name.

Oh! Look, there are the mashed potatoes doin' the same.

I fail to resist a temptationso great

And before you know itI have cleaned my plate.

So limit your intake, beware and be smart

Eat too much of the killer potatoesand it will stop your heart.

Mr. Moore is 34. He dialyzes in Louisville, KY.

Curse of the Killer PotatoesBy Derrick Moore

Mr. Strickland receives his dialysis in Charlotte, NC.



Lettersto the editor

Dear Editor,

When I meet old or new friends I always tell them that I'm stillhere, alive and continue to be active after passing 30 years, all onhemodialysis. I always enjoy Family Focus.

I began home hemodialysis on September 19, 1974. I ended homehemodialysis on September 19, 2002, completing 28 years at home.I must say with much enthusiasm that my 28 years on homehemodialysis were the best years of my life. I lived an active andpositive life.

Today, I drive myself 18 miles away to a dialysis center in Humboldt,TN. They are excellent. They take very good care of me and meet allmy needs. They treat me with dignity and respect three days a week.Actually, they make me and all patients feel very special.

For many years, my “motto” was “Don't live to dialyze, dialyze tolive.” I do not quite measure up to my motto today, but I still try tobe active and maintain an interest in something special.

Sincerely,Willard “Moody” Richardson

Donna and Willard “Moody” RichardsonAtwood, TN, 1985

�Dear Editor,

My clinic always has the most recent copy of Family Focus availablefor patients. All the articles are helpful. Your paper provides soundrecommendations and has been very helpful to me during my threeyears on dialysis. I do CAPD and am still working full time. Your cur-rent issue on Mental Health was very inspiring. Issues such as thishelp me to keep going, even when I feel down and tired.

Thanks, and continue the good work.

Randolph SlaySavannah, GA

“Dialysis Is a Small World”By Gina M. Sikon, MSW, CSW

Do you know the saying “Be careful howyou treat people, because you never knowwhen you will see them again”? This storyis a testimony to that statement.

I am a Social Work FieldInstructor for Wayne StateUniversity. That means that Isupervise social work studentswhen they are doing the clini-cal portion of their studies, ortheir “real world experience.”In September 2003, I received

a call from my studentplacement candidate,Tracey Quainton. I

thought that her name was familiar, but Idid not know why. She was thinking thesame thing. When she came for her inter-view, it was then that I realized why shewas familiar. Tracey was my client whenshe dialyzed at a former dialysis unit whereI worked until 1998. When I left there, welost touch. Since then, she has had a suc-cessful transplant and returned to school.She graduated with a Bachelor of SocialWork Degree from Wayne State. I haveenjoyed being Tracey’s mentor, teaching herwhat it is like to be in the professional sideof dialysis. If Tracey goes on to seek herMaster's Degree in Social Work, hopefully she will consider acareer in dialysis.

Ms. Sikon is a renal social worker inSouthfield, MI.

Gina M. Sikon

Tracey Quainton

If you would liketo receive Family

Focus at home,please call

888-JOIN-NKF.



More Letters to the editor

Dear Editor,

As an RN and caregiver to my husband, I was thrilled to readthe spring issue of Family Focus dealing with home dialysis.Although, sadly, my husband died in October of 2004, we haddialyzed him at home for nearly 25 years (traditional 3x perweek hemodialysis).

During the entire time, he continued to work full time, becameinvolved in our community and played golf several times perweek. Additionally, we raised our now 23 year old son, traveledand enjoyed our life. Admittedly, the last six months were diffi-cult ones, but we never considered any other alternative tohome treatments. It allowed us flexibility to live our life in anunbelievably normal manner.

In an era when phrases like “personal responsibility” and “call-ing the shots” seem to be overused clichés, why aren’t morepatients embracing the opportunity to take charge of theircare? My observations (supported by research, I think) are

that educated, involved patients are healthier patients. I willgrant that center patients can be in control to an extent, butwhat is better than being “boss”—empowered, totally in chargeof treatment outcomes? While not an option for everyone, withproper training, self care can be an attainable goal for manymore people.

So why aren’t people battering down the doors of the hometraining programs, eager to take on the challenge of home care?Besides the usual list delineated in your “burdens of dialysischecklist,” with which I agree by the way, I feel there is anotherissue— FEAR! In our years of talking with others, Jerry and Iheard statements like: “Machines scare me,” “What if I dosomething wrong?” “I’m afraid I can’t put a needle in my wife,”“I’m afraid of not being where there is a nurse or doctor.” Thelist could go on ad infinitum.

Home hemodialysis offered my husband and me the opportuni-ty to lead productive, full (and, yes, wonderful and fun filled)lives. Thank you for focusing on an issue vital for ESRDpatients.

Denise Eilers, RN, BSNDavenport, Iowa

Dear Family Focus,

My mother and father have both been on dialysis. My motherpassed away in February and had only experienced hemodialy-sis. My father had experienced both hemodialysis and peritonealdialysis (PD). His kidney function decreased dramatically in ashort amount of time so he had to have dialysis as soon as pos-sible and was directed to hemodialysis. After awhile, Dad decid-ed that he would like to give PD a try. Dad has many otherhealth problems so his body is very frail, so he was unable to doany of the lifting of the solution bags for set-up or disposal. Astime passed, Dad also required more and more PD exchanges.During this time, he was always complaining of “not feelingvery good.” The PD nurse explained that he was still not gettingenough dialysis. So we opted for a 30-day trial period back onhemodialysis. He has since regained his appetite, can taste hisfood again, has more energy and feels revitalized. Peritonealdialysis was no longer an option for Dad if he wanted to feel better and live longer.

Anyone who has dialysis as part of his or her life knows thepros and cons to each type of treatment. Because of Dad’s situa-tion, all of the responsibility became mine. I felt like I had lost my freedom because I had to schedule my life around his dialy-sis exchanges. I started to experience burn-out and found myself becoming depressed and feeling as if I was being drained ofenergy. Even though we had to drive to the dialysis unit three

times a week now, I feel as if I have been relieved of a greatresponsibility. I am still doing many things for my father and Ienjoy being his caregiver, but when it becomes so involving thatyou are too tired to spend time with your own family, cancelyour own doctor appointments, or quit work to care for someone,it is time to take a look at different options. My advice to familycaregivers is to stay supportive in as many ways as you can butmake sure you reserve time for your own family and for your-self! If you become drained as a caregiver, you will no longerhave the energy needed to give quality care to your loved one.

Sincerely,

Faith A. KresserPresque Isle, WI �Dear Editor,

I am a new chronic kidney disease patient. I read FamilyFocus all the time. I have found it a great help. It touches on somany issues.

Sincerely,

O.E. BradleyCincinnati, OH

�



ISTARTED RECEIVINGFAMILY FOCUS IN AN

ATTEMPT TO LEARN ASMUCH AS POSSIBLE aboutkidney failure. My mother wastold she needed to be on dialy-sis immediately and this wasquite devastating because shewent to doctors yearly for herannual checkups. One year shehad an abnormal urine test andso starts my story.

My mother, Teresa, was 68years old. She had gotten so illin a short period of time. Wecould not wait for the fistula tomature in her arm, so she hadsurgery and had her firstcatheter placed in her chest.She was so frightened. All of asudden I knew what a parentmust feel like with a childbecause now I was in that role,trying to provide comfort to my mother.

I live 35 miles from my moth-er. So three days a week, Iwould wake up at 4 a.m., driveto pick her up and arrive at

the dialysis center at 6 a.m. forher three-hour treatments. Iwould take her to breakfastand also take a book to read toher. I sat with her througheach treatment for the entireyear she was on dialysis.Sometimes I would actuallyget the chance to read to her,sometimes she would fallasleep and sometimes shewould have anxiety attacks. It

was at those times that I felttruly helpless.

With every visit, I learnedsomething new. I would look ather chart that listed every-thing from her albumin to

hemoglobin levels. I askedquestions and got to where Iknew what her levels weresupposed to be. I asked morequestions if they weren't.

There were times my motherseemed to go into a deepdepression. She felt so sick andweak and at times told me shejust wanted to die. I startedtalking to her about a kidneytransplant and she was some-what interested until I told herthat I wanted to be her donor.She was not receptive at alland was adamant: “Absolutely

not!” she said. “What if some-thing goes wrong? I have livedmy life. I cannot risk some-thing happening to you.”I was at a loss. I started callingthe hospitals that were coveredunder her insurance and got

information ontransplants. Withthat informationand feeling that Ihad to do some-thing to help mymom WANT tolive, I started topray. I prayed toGod and askedthat if I wasmeant to help mymother in thisway, to pleasegive me a sign

and guidance on what to do.

After two weeks of praying andasking for an answer, my job of 22 years was eliminated.This was bittersweet news, but just what I needed to againapproach my mom about beingher donor.

After some time, my motherfinally agreed to the trans-plant. I was thrilled andthankful that after all of myconversations with her, some-thing had made a difference.The joke was on me. Apparent-ly she had seen something onTV where a basketball playerhad his brother donate a kid-ney. He was the first to return

to the NBA as a kidney recipi-ent, and his brother was doingfine too. So much for all myspeeches!

We were side by side up untilthe pre-op room. When I final-ly saw my mother after oursurgeries, she said she had notfelt this good in several years.She also found it great to uri-nate. Funny how many thingswe take for granted!

My mom is doing great and isable to truly enjoy life. She hashad very few side effects to theanti-rejection medications. Wefeel truly blessed to have herin our lives.

I know my mom appreciateswhat I have done for her, and Iwould to it again in a second.One day she told me, “This isreally special. I gave you lifeas a child, and now, you havegiven me life.”

I want Family Focus to knowhow important it is to let thosewe love know it now, whilethey are here. We never knowwhen they will leave us, andthen it is too late.

Life is truly a gift. May we alltreasure it. May those who arehaving second thoughts aboutbeing a donor find the strengththrough our God almighty togive the greatest gift one cangive—the Gift of Life!

Ms. Hernandez lives inRosharon, TX.

A Daughter’s LoveBy Ginny Hernandez

“I want Family Focus to know how impor-tant it is to let those we love know it now, while

they are here. We never know when they willleave us, and then it is too late.”

❝I know my mom appreciates what I have donefor her, and I would to it again in a second.❜❜

Letters to the editor

Dear Editor,

I started dialysis in November 1985. I began on PD because mykids were small and I wanted to be home with them. I am nowon hemodialysis in Jessup, Georgia. The staff and center are socaring and loveable. They are like family, and all of thepatients are too.

I started reading Family Focus and fell in love with it. Thereare so many great things to read.

Sharline HollingworthJessup, GA �Dear Editor,

As a dialysis patient and a recipient of your magazine, it isvery informative. Thank you.

Marcello TrottaMaspeth, NY



Cartoon CornerThe Lighter Side of Dialysis

By Peter Quaife

As you well know, sitting in the dialysis chair three times a

week can get a little boring, so a few years ago I decided that I

had to find something to do besides watching TV and doing

crosswords. So I began to draw cartoons depicting the trials and

tribulations familiar to all of us people on dialysis. Much to my

delight (and chagrin!) the end result has become The Lighter

Side of Dialysis cartoon book.

I grew up in England and was a member of The Kinks, a fairly

popular rock & roll group in the 1960’s. If you can remember

“You Really Got Me,” “Sunny Afternoon,” “Lola” and the other

hits we were fortunate enough to have, that’s me on bass. I

moved to Canada in 1981 and entered the wonderful world of

kidney failure in 1998.

Sorry, Mr. Dracula; the renal unit somewhat cleans the blood,

the blood bank you want is on the 5th floor.

Drency Edward Dudley was

on dialysis from 1996-2002;

now he has a kidney trans-

plant. Mr. Dudley lives in

Michigan.

Reprinted with permission from “The Lighter Side of Dialysis,” abook of cartoons by Peter Quaife, a kidney patient since 1998.

Peter Quaife during dialysis.

(Left to right): Peter Quaife, Dave Davies, Ray

Davies and Mick Avory.



I RECENTLY PICKED UPMY FIRST COPY OF

FAMILY FOCUS. I READYOUR NEWSPAPER FROMCOVER TO COVER. I was somoved by many of the articleswritten by my fellow kidneypatients as each one sharedtheir own experiences andhearts' feelings. I thoroughlyenjoyed each article. As weESRD (end stage renal dis-ease) patients know, no onereally understands untilthey’ve “been there.” So, asthe funny little saying oftoday goes, “Been there, donethat, and got the T-shirt.” Ithink most of your readers fallinto the last category, like me.We’re all wearing T-shirts! Weunderstand each other as no others can.

After reading your newspa-per, I decided that I wouldshare my own experience inhopes that it might helpinspire others as I receivedinspiration from readingother patients’ experiences.

I am 66 years old and workedin China for the past 22 years.I helped build an eye hospitalfor the blind where the poorreceive free eye surgery. In myheart, I believe God called meto help those dear people whohave had such tremendousneeds. I loved every minute

spent with them. Sadly, my work in China had to ceasedue to kidney failure.

My family had a genetic kid-ney problem. I lost my fatherto it in 1945, when I was justfive years old. In 1997, I lostmy only daughter to the samegenetic disease. So, kidneydisease has not been kind tomy family. I was diagnosedwith Alport’s Syndrome as ayoung woman. The nephrolo-gists cared for me for manyyears and I led a completely

normal life with no ill effectsfrom it until I was 61 yearsold. The tell-tale signs beganto show up: high creatinine,lack of energy, etc. I was facedwith ESRD very quickly. Itried my best not to becomealarmed, but as most of youknow, it’s a scary situation to

find oneself in. It truly wasfor me, especially having seenboth my father and my daugh-ter succumb to it.

One night, about six monthsbefore my doctor told me thatI needed to begin dialysis, Ihad a dream that I was sit-ting in a dialysis chair, alongwith a group of about sixother ladies on dialysis. I sawthe plastic tubing that is usedwith the dialysis machinebeside my chair. I reached topick it up but to my amaze-

ment, I discovered that Iwas not attached to themachine. Seeing that, Ilaid it back down and I gotout of the dialysis chairand left the center. Now,that was my dream inearly Spring 2001.

In reality, six monthslater, I found myself in adialysis chair, only thistime I was hooked up to it

as it cleansed the impuritiesfrom my blood. However, Inever forgot the dream I hadearlier. I truly believed thatthe dream was from God.With all my heart I believedthe day would come that Iwould get out of the chair andwalk away from it, just as Ihad done in the dream. In themeantime, I just went in tomy regular Monday,Wednesday, Friday treatmentswith a grateful heart that Iwas still alive. After I had

been at my regular dialysiscenter for a few months andgot to know my nurses, techsand doctors, I shared mydream with them. As timewent on they, too, began tobelieve my dream along withme. Many times they wouldcome by my chair and sayencouraging words such as “Itwon’t be much longer”; “Youwon’t be here with us andwe’re gonna miss you”; “Soonyou are going to walk awayfrom that dialysis chair.” Iwould reply, “Yes. I don’t knowwhen, but I will come out ofthis chair.”

Due to a genetic kidney prob-lem, I went into ESRD in thesummer of 2001. I had a won-derful medical team who putin my access and started meon hemodialysis.

Personally, I never dreadedmy days on dialysis, not onetime. Now, that is not to saythat I would not have chosenanother way to spend thosehours of my life. But dialysiswas not a bad experience forme as it sometimes can be forsome. Aside from the needles,my 10 months on dialysiswere easy for me. I used those635 hours to write a book,which will soon be published.I would never have had thetime, nor taken the time towrite the book, if it were notfor all of those hours on thedialysis machine. So I usedthe hours productively.

Geri Morgan at The Forbidden City, China.

❝DIALYSIS AND TRANSPLANT have truly been

one of my life's greatest blessings. Not only have they

extended my life, but they have changed my heart

in so many ways.❜❜

Continued on page 15

A Dream Come TrueBy Geri Morgan



I ACCEPTED THE FACT THAT IHAVE KIDNEY DISEASE ANDWILL NEED TREATMENT FORTHE REST OF MY LIFE, yet Istill have trouble adjusting to thechanges in my life that the disease oftenbrings. During this course of treatment,deep personal feelings of guilt, denial,anger, depression and frustration are notuncommon. In fact, they are quite under-standable for my family and me.

I realize that the stresses and frustrationsof kidney failure are real and at timesvery difficult for both my family and me.You may feel as though your world is cav-ing in, especially if you have not faced amajor crisis before and the diagnosis wasunexpected.

I have felt helpless at times because Icannot do anything about my illness. Ihave been angry that kidney disease hashappened to me and affects my familyand friends. My biggest fear is that I maydie. Periods of confusion and tensionoccurred as I tried to cope with thedemands of the illness, anxiety abouttreatment and the disruption of everyday life.

I had many questions about kidney dis-ease and its treatment. These includedquestions like: “What kind of treatment isfor me?”; “Do I need to quit my job?”;“How will I get to my treatment center?”;“How will I pay for my treatment?”; “Howwill I handle my diet?”; “How long will Ineed to wait for a transplant?”; “Can Iexercise?”; “Will I be able to travel?”Having this disease is over-whelming at times, but it isimportant to know that help isavailable and that your ques-tions will be answered. I amvery interested in my own care.It is very important to me tofind out more about my kidneydisease and its treatment. Thetreatment center and theNational Kidney Foundationcan help provide the answers.

Also, the social worker is apatient's best friend. He or shecan help you get answers tomany of your questions, andalso help with nonmedicalissues. The social worker isdedicated to helping you makeyour treatment a manageablepart of your life.

I stay involved in the pleas-ures, activities and responsibil-ities of my life. I also find timeto exercise. I share my feelingswith my family and a few closefriends. I also allow them theopportunity to share their feel-ings with me. We can learntogether. I try not to focus on

my problems but instead on thegood things that are happening inmy life.

Most importantly, I am veryblessed to have my own donor, my broth-er, to give me the best present of all, thegift of life. Thanks, Big Brother!

Ms. Williams lives in Dallas, TX.

A Sister’s Love(To her big brother)

By Kinita Williams

I stay involved in thepleasures, activities and

responsibilities of my life. Ialso find time to exercise.

❝Most importantly, I am very blessed to have my own

donor, my brother, to give me the best present of all, the

gift of life. Thanks, Big Brother! ❜❜



HELLO! I HAVE BEEN ACAREGIVER OF MY HUS-BAND, WHO HAS SERIOUS

DIABETES WITH ITS VARIOUSMEDICAL CONSEQUENCES, FORTHE PAST 22 YEARS. For the last fouryears he has also been on dialysis. Ithas been a roller coaster lifestyle for usand our children. Emotions, financesand relationship role changes tooktheir toll. I have found that a caregiversupport group was essential. It hasbeen helpful in giving preventativeinformation andencouraging me as Ihear other experi-ences far worse thanmine. We found we

have all had thesame issues of grief,

denial, anger, sleeplessness, loss of con-centration, depression and the feelingof never getting anything done. The oneconsistent upside is—opportunitiesabound for character refinement! Wedecided we would encourage each otherto exercise, eat right, watch for discour-agement and depression and call andpray for one another, for we all saw wecould not be a caregiver on only ourown strength for very long. I highly rec-ommend starting an informal caregiversupport group in your dialysis clinic. In

those caregivers youwill find the unsungheroes of today.

Talk to the clinic doctor, nurses andsocial workers about starting one.

The doctors, nurses, social workers,staff, volunteers of many special pro-grams, neighbors, church friends andpastors and chaplains were all part ofthe community needed to inform, helpand steer us through all the extremeswe live with to find our new balance,purpose and role in it. It may not bewhat we expected or desired. But, thereis a new, yet different, fulfilling life forthe person on dialysis and the caregiv-er after dialysis.

Alexandria works and lives in La Grange, GA.

CAREGIVERS Have Needs Too! By Alexandria

Alexandria

I saw the reality of my dream come into being. I got out of thedialysis chair on June 4, 2002, and walked away from it, justas I had done in my dream. The next day, I entered the hospi-tal for transplant surgery. I believe God gave me an outstand-ing miracle as I received a perfectly matched kidney from the28-year-old adopted daughter of one of my friends. I had knownAmy, my donor, since she was six months old. I now refer toher as “my Hero!” I think a scripture in the Bible expresses myfeelings to my donor best of all. Jesus said: “Greater love hathno man than this that he lay down his life for his friend.” (John15:13) That is what she did for me!

My life after transplant has not been perfect but it has beengood. My kidney is working great but occasionally I will have alittle “bobble” as I call them, with my meds that we transplant

patients know all about! I’m just really one “happy camper”these days.

I hope my story can be of encouragement to someone out therereading Family Focus. I'm a grateful 3 1/2 years, post-op-trans-plant patient. I will be going back to work with the blind inChina, God willing.

Dialysis and transplant have truly been one of my life's great-est blessings. Not only have they extended my life, but theyhave changed my heart in so many ways. May I take thisopportunity to thank the great medical people who spend theirlives caring for dialysis patients. You are appreciated!

Ms. Morgan lives in Dallas, TX.

A Dream Come True…Continued from page 13

16 FAMILY FOCUS • Volume 15, Number 1 01-65-1501

Hurricane Relief AidTHOUSANDS OF VICTIMS OF HURRICANESKATRINA, RITA and WILMA face homelessness and dev-astation, but kidney patients without access to dialysistreatment face life-threatening danger in addition to lossof property.

To help people with chronic kidney disease (CKD) in theaffected areas get the services they need, the NKF hascreated a relief resource network posted on www.kidney.org, offering dialysis locations and treatmentinformation, other direct patient assistance and infor-mation for health care professionals interested in vol-unteering for the effort.

"We are very gratified by the terrific cooperation we haveseen by everyone involved in helping patients deal withthis disaster. National Kidney Foundation Affiliates,other kidney organizations, the large dialysis organiza-tions and the kidney-related industries have all workedhard and closely together on behalf of the people who aresuffering," stated John Davis, CEO of the NKF.

To contribute to the Foundation's Patients’ HurricaneRelief Fund, visit www.kidney.org or mail checks to theNational Kidney Foundation Patients’ Hurricane ReliefFund, 30 E. 33rd Street, New York, NY 10016. One hun-dred percent of funds contributed to the Relief Fund willgo directly towards patient assistance.

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