is a program of the national kidney foundation. volume 12 ... · the surgery went well and i was...

Published by the for transplant recipients of all organs and their families.© Copyright 2005National Kidney Foundation, Inc. ISSN# 1524-7635

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Transplant Chronicles is a Program of the National Kidney Foundation.Summer 2005Volume 12, Number 3

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I have had lupus (Systemic LupusErythematosis or SLE), a chronic dis-ease that causes the immune system toattack the body’s tissues, since I was11 years old. In 1989, when I was 17,my kidneys failed. I felt my life wasover. Within a period of seven monthsnot only did my kidneys fail, but I alsolost my mother, my maternal aunt, anda great aunt. It was only through thetremendous support I received frommy grandmother, other family mem-

bers, friends and the medical staff atDownstate Medical Center, whom I’vegrown to love, that I was able to staystrong. I will never forget the day Dr.Eli Friedman told me I was going tobe fine and would live a long produc-tive life.

I began Peritoneal Dialysis (PD) whenI was just entering 11th grade. I wentto the pediatric floor for dialysis everyother day. I strove to graduate highschool on time and accomplished thatgoal. This taught me I could do any-thing as long as my heart was in it. Iwas doing well on PD until I devel-oped a terrible infection and had to beswitched to hemodialysis. The twoneedles that had to be inserted into myarm terrified me. To me, this was theworst. In order to stay sane, I pursuedmy education and worked part-time.

Then, in November of 1993, came theday I’d only dreamt of: the transplantcoordinator called asking me if Iwould accept the kidney they had! Myreply was a firm “of course I will.” Igo into everything I do with a positiveattitude.

Once, while I was being prepared forthe surgery, I prayed. I was overcomeby a feeling, and believe it was myMom letting me know everything wasgoing to be all right.

The surgery went well and I was readyto conquer the world! I continued attrade school and acquired the skills towork at an advertising agency. Then, Iwent to college part-time. Everythingwent well until about two years laterwhen the kidney rejected. The doctorsdid everything in their power to saveit, but my first transplant ended inJanuary 1996. I do not regret thistransplant experience, however. I amGod’s child and He has helped me thus far.

In this issue ofTransplant Chronicles

� Editor’s Desk . . . . . . . . . . . . . Page 2� Let Your Voice be Heard . . . . Page 2� Family Matters: What

About Kids . . . . . . . . . . . . .Page 3� Family Matters:

A Family Affair . . . . . . . . . .Page 4� Telephone Discussions

Materials . . . . . . . . . . . . . . Page 4� Gastric Bypass Surgery . . . . . Page 5� Prescriptions . . . . . . . . . . . . . Page 6� Transplant News Digest . . . . . Page 7� My Experience with

BK Virus . . . . . . . . . . . . 1� Medicare Factoid . . . . . . . . . Page 11� Medicare Coverage . . . . . . . Page 12� Preventing Back Injuries . . . Page 13� Islet Cell Transplantation . . . Page 14� HIV and Transplantaton . . . Page 15� Kidney Transplantation:

Then & Now . . . . . . . . . Page 16

Continued on page 12

For the Love of Family� By Leslie Taylor-Bentham

I am a walking testimonial. My family and friendsare the greatest. I would not trade them for anything in the world.

Leslie and Elijah after hersecond transplant in 1996.

editor’s desk editor’s desk

We are very lucky to have a verycreative and involved editorial

board. I am pleased to have JoshGoldberg, our youngest board memberyet, deliver our first guest editorialmessage in this issue. In the words ofMarcel Proust, “The real voyage ofdiscovery consists not in seeking newlandscapes but in having new eyes.”

—Laurel WilliamsEditor-in-Chief

Dear Readers: When kidney, heart, lung, liver or anydisease strikes your family, everyoneis affected. Though you may not havethe disease yourself, your life changesjust as dramatically as if you were thepatient. Through this process you muststrive to stay strong.

Lance Armstrong is, as we all know, acancer survivor. But his greatest tri-umph is being able to continue livingdespite his struggle with a life-threaten-ing illness. What defines him as a herofor me is not his six consecutive winsat the Tour De France, but his focus on

Laurel WilliamsRN, MSN, CCTCEditor-in-Chief

2 Transplant Chronicles, Vol. 12, No. 3

Transplant Chronicles is published by the NationalKidney Foundation, Inc.

Opinions expressed in this publication do not necessarily represent the position of the National Kidney Foundation, Inc.

Volunteer Editorial Board:Laurel Williams, RN, MSN, CCTCEditor-in-ChiefUniversity of Nebraska Medical CenterOmaha, NE

Kay Atkins, MS, RDSamaritan Transplant ServicesPhoenix, AZ

Dean S. Collier, PharmDUniversity of NebraskaOmaha, NE

Ronald N. Ehrle, RN, BSN, CPTCLifeGift Organ Donation CenterFort Worth, TX

Jack FassnachtChicago, IL

Joshua S. Goldberg, teen editorEncino, CA

Shirley Schlessinger, MDUniversity of Mississippi Medical CenterJackson, MS

Victoria L. Schieck, RN, BSN, CCTCUniversity of Michigan Health SystemAnn Arbor, MI

Debra J. Tarara, RN, BSN, CCTCMayo ClinicRochester, MN

Lara Tushla, LCSW, MSWRush University Medical CenterChicago, IL

Chris L. Wells, PhD, CCS, ATCUniversity of MarylandBaltimore, MD

Jim Warren, MSTransplant NewsBaltimore, MD

Editorial Office:National Kidney Foundation, Inc.30 East 33rd Street, New York, NY 10016800-622-9010, 212-889-2210www.kidney.org

Editorial Director: Catherine Paykin, MSSWExecutive Editor: Gigi PolitoskiManaging Editor: Sara KosowskyPublications Manager: James McCannProduction Director: Sunil VyasDesign Director: Oumaya Abi SaabEditorial Assistant: Helen C. Packard

living life to the fullest instead of sur-rendering to the reality that death maybe “around the corner.”

We can all learn a lesson from Lance.We can all be heroes of a kind, if wemake every day count in spite of hor-rendous obstacles placed in our path.When adversity is overwhelming, thesimple task of getting up in the morn-ing and “taking care of the businessof the day” can be heroic.

Family members stay strong for eachother. Like relay teams, they pick upthe slack for one another when one isstruggling. It is this gentle balancethat makes us all heroic. Having amother with kidney failure, I knowthis dance all too well. Although wemay step on each other’s toes once ina while, I wouldn’t change this danceof life for anything.

Looking forward to hearing from you,Your pal,Joshua S. Goldberg (for the editorial board)[email protected]

{ “In the depths of winter I finally learned that within me there lay an invincible summer.” —Albert Camus. Submitted by Rachael Wong, MPH, kidney transplant recipient.

{

Elizabeth McIlwain is 20 years old and leaving hometo begin a new life! Anna, Elizabeth’s mother wouldlike to send her off with the benefit of your experienceand wisdom. Elizabeth has always been diligent abouttaking her meds on time, but with a new routine andchange of lifestyle, she could benefit from tips andtricks to remember her meds. For example, one trick

Elizabeth employs is keeping a set of pills in a smallplastic bag in her wallet. Let’s help Anna give Elizabetha great send-off!

Log onto www.recipientvoices.org and let Elizabethknow your best tips for remembering to take your meds.

Let Your Voice Be Heard!

ElizabethMcIlwain, MBA,and mom, Anna

McIlwain

Transplant Chronicles, Vol. 12, No. 3 3

This is particularly true when childrenare involved. Our children had to gothrough this almost a decade ago.

My wife, Lizzie, and I have threesons. We learned Lizzie needed aheart transplant in 1996, a few monthsafter moving to Indiana from Bostonas my work required. I knew movinghad been a big sacrifice for thewoman I loved. She had to leave herfamiliar surroundings that includedfamily, home and friends, and followme with our sons to my new job. Thisjob would help others but bring ourfamily into a world of “downwardmobility.” When I learned her life wasthreatened, I turned my full attentionto saving her. This left little time forthe boys, and I often overlooked oreven became impatient with theirneeds.

Our oldest son, Nick, was 19 yearsold when his mom was living at thetransplant hospital waiting for a heart.He had just left for college, whichwas 600 miles away. It was the righttime in his life for him to be moreindependent and mature. He neededspace to discover himself, and maybeeven discover that his parents had notbeen the worst parents in the world.He was torn when he learned abouthis mother’s illness. He was conflict-ed about when, and even if, he shouldleave school to be with the family.Because of the great distance, hecouldn’t always get news about theever-changing realities of his mother’smedical condition, and he couldn’talways be with the rest of the family.

It was in a sense a break for him thathe didn’t always have to be in themidst of the turmoil at home, but hewas also isolated without any emo-tional support. My wife and I didn’twant to disrupt Nick’s college years,but sometimes we needed him athome. Maybe it was unavoidable, butwe sent him mixed messages. I’msure this just added to his confusion.

Our middle boy, Andrew, had beenangry over having to move during hissophomore year in high school. Hecouldn’t stand to see his mother suffereither. He responded to the additionalstress of his mother’s condition bywithdrawing and becoming evenangrier. He often seemed callous, oreven selfish. We wanted to shake himout of what we felt was a particularlynasty case of teenage self-absorption.He tried to block out what was goingon, and, when he couldn’t, he’dbecome enraged. He refused to visithis mother in the hospital. “Whatgood would it do?” he said. “I can’tcure her or change her or anything, sowhy should I visit her? It hurts toomuch!”

Jon, the youngest of the three, wasonly six when his mom got sick. Henever realized, throughout the entirecourse of her illness, how grave thesituation was. As long as he was ableto see his mom, Jon thought every-thing was fine. There were times,however, when I had to whisk Lizzieoff to the hospital, which was a hun-dred miles away from our home, andwas unable to tell Jonny his mothermight not be returning that night.

Somehow,Jonny didn’tnotice the lifeand deathstruggle thatwas takingplace aroundhim. Lizzieand I talked tohim aboutdeath andheaven.Sometimes hehad night-mares, but evenduring the worst of Lizzie’s suffer-ings, Jon remained staunchly contentand optimistic.

It had always been our goal to supplyeach boy with a normal routine ofhome, school, family and friends.That wasn’t possible with all the med-ical emergencies that rocked our lives.Because of their varying ages andtemperaments, each boy handled thisroller coaster in different and individ-ual ways, and each boy required spe-cial love and help. The transplantprocess stretched our family to itslimits. But, thanks to the help of ourfriends and our faith, we made it—sofar at least.

Today Nick is 28. He’s a stage actorliving in Seattle and is married.Andrew is 25, and is living and work-ing in New York City as an invest-ment banker. Jonny is 16 now. He’san honor student, in love with his firstgirlfriend, and hopes to one day find acure for cancer, or to do research onmaking transplant medicines lesstoxic.

I look back on the last eight yearswith gratitude for the time we havebeen given. Miraculously, we havebecome a closer family. TC

ANY ORGAN TRANSPLANT RECIPIENT knows they have a precious gift. But this gift does not

come without a cost. It not only affects the patient, but alsothe recipient’s family.

F a m i l y M a t t e r s F a m i l y M a t t e r s F a m i l y M a t t e r s F a m i l y M a t t e r s

Lizzie and JimO’Donnell

See page 4 for more “Family Matters”

What About the Kids…? A Heart Transplant’s Challenge� By Jim O’Donnell


Watching a family member go throughthe roller coaster of chronic illness and transplant is difficult. Familymembers may experience many feelings including:

These feelings and others are normaland are okay. Your sick family member is also experiencing lots of emotions.

Everyone has “coping mechanisms.”These are techniques you use without

even thinking about it to get throughstressful times. Do you make jokes when you are uncomfortable? Youmight be using humor to cope withstress. Did you go to the library orsearch the Internet when you learnedthat your father needed a new liver?You might be trying to understand whatis going on in order not to feel so outof control. Do you change the subjectwhen your parents start talking aboutthe latest test results? You might be try-ing to avoid talking about things thatare scary or hurtful. Are your gradesslipping? You might be trying to tellthe other people in your family that youneed some attention. Everyone uses dif-ferent coping mechanisms, so we aresometimes confused by the ways otherpeople in the family act!

It is important for everyone in the fam-ily to have someone to talk to.Sometimes family members can talk toeach other. Other times a teacher,coach, best friend, minister, rabbi orreligious leader is the confidante.Sometimes it is helpful for the wholefamily to see a social worker or profes-sional to help make sure everyoneunderstands each other. If you or some-one in your family is having troublingfeelings or thoughts, talk to a trustedmember of your transplant team. Theycan help identify counseling resourcesin your community or provide anopportunity to speak to you as a family.

Editor’s note: Future issues ofTransplant Chronicles will feature articles by Dr. Bradley, a teen psychologist. TC

WHEN YOU READ A STORY like Lizzie O’Donnell’s(pg. 5), it becomes apparent that chronic illness affects

the entire family and not just the person with the illness.

F a m i l y M a t t e r s F a m i l y M a t t e r s

A Family Affair� By Lara Tashla, LCSW, MSW

• CONFUSION AND ANGER:Why is my mom suffering?Why isn’t God answering myprayers? Dad said he was com-ing to my concert and now heis so tired, he can’t come.

• GUILT: Did I do something tocause my sister to be sick?Can I still have fun with myfriends and laugh while my dadis suffering?

• FEELING LEFT OUT: Mybrother gets all the attentionnow that he is sick. My dadcan’t come to my gamesbecause he is in the hospitalagain.

• HELPLESSNESS: I can’t doanything to make my mom better!

• FEAR AND SADNESS: Whatwill happen if my dad dies?What will I do without my sister?

• PRESSURE TO BE MATURE:I have to help take care of myyounger brother while momand dad go to the doctor’sappointment. I have to bestrong for my mom.

Making the Most of Your Life:

Issues for Today'sTransplant Recipient Just a CLICK Away!

DID YOU MISS our telephonediscussions? The NKF held aseries of telephone discussions,hosted by actor Ken Howard, on“hot topics” for transplantrecipients. Access all the infor-mation on www.transplantrecipients.org Click on theboxes on the homepage. Youwill gain access to the audiorecording, and written script foreach of these topics: Getting theMost Out of Medicare; Under-standing Depression; andHelping Others While Empower-ing Ourselves.

The National Kidney Foundationgratefully acknowledges theunrestricted educational grantreceived from Roche for theseprograms.


control weight. Transplant candidatesand recipients deal with issues includ-ing increased fatigue, physical limita-tions, dietary restrictions, side effectsof medications and the newfound free-dom of non-regulated diet after trans-plant. Weight loss methods, such asherbal products, over-the-counter dietpills, or severe restriction of certainfood groups are not safe. Gastricbypass surgery has recently been con-sidered as a treatment option for selecttransplant candidates or recipients.Gastric bypass surgery is performed inthe upper part of the abdominal cavity,while transplanted kidneys are placedin the lower groin area. As Dr. AlfredoFabrega from Banner Good SamaritanTransplant Service stated, “These aretwo separate surgeries. The bypass pro-cedure will not interfere with, or pre-vent having a kidney transplant.”

The number of gastric bypass surgeriesin America has increased dramaticallyin the past few years. These proceduresmay be an option for people who aremore than 100 pounds overweight. Themedical name for this is morbid obesi-ty. Obesity presents a significant riskfactor for developing Type 2 diabetes,high blood pressure, high cholesterol,sleep apnea, joint disease, heart dis-ease, acid reflux and early death. Manytransplant candidates and recipientsalready have many of these medicalproblems or are at a greater risk ofdeveloping them. It is therefore neces-sary to determine what gastric surgeryis and whether it can be more success-ful than conventional weight-loss techniques.

There are two categories of gastricbypass surgery for obesity. The first iscalled malabsorptive. This surgery

shortens the digestive tract and therebyreduces absorption of food. The othertype is called restrictive. This surgeryreduces how much food the stomachcan hold. Some surgical procedurescombine both restriction and malab-sorption.

Malabsorptive:This procedure is both restrictive andmalabsorptive. With this surgery, mostof the stomach and part of the smallintestine are bypassed. The naturalstomach is reduced to hold only a fewounces and is referred to as a pouch.The pouch is then connected to a lowerpart of the small intestine. This bypass-es part of the digestive tract thatabsorbs nutrients and calories. Themost common type of bypass surgeryin the United States is the Roux-en-Ygastric bypass. This operation createsnutrient deficiencies due to malabsorp-tion of nutrients. Protein, iron, calciumand B12 are “at risk” nutrients thatrequire special attention. A completevitamin and mineral supplement isrequired daily. Long term follow-upblood tests are needed to avoid malnu-trition.

Restrictive: A restrictive procedure only limits thequantity of food eaten and does notchange the normal digestive process.An adjustable gastric band is now usedmore often than other banding or sta-pling procedures. The gastric band isplaced around the upper part of thestomach. There is no cutting or sta-pling needed to divide the upper stom-ach into a pouch. The lower part of thestomach is not affected. This limitshow much food can be consumed ateach meal. The band can be adjusted

by filling it with normal saline to fur-ther limit food intake. Food choicesand physical activity are the mostimportant determining factors in suc-cess with gastric banding. The bodyabsorbs all the calories eaten, becausethere is no malabsorption with the gas-tric band.

Gastric bypass surgery is a specializedprocedure that requires a non-trans-plant surgeon. Consideration for thissurgery requires a referral from boththe nephrologist and the transplant sur-geon. A comprehensive workup andevaluation is performed by the bariatricteam. The type of procedure will bedetermined by the combined medicalteams. All surgery carries a risk ofcomplication, and, possibly, death.These risks are increased in the severely obese person.

Gastric bypass surgery requires anabsolute life-long commitment to besuccessful. This commitment startswith changes instituted before the sur-gery that must continue thereafter.Initially, dietary intake is restricted to aprogression of liquids, pureed food,protein drinks and soft foods lastingseveral months. Food intake is dramati-cally reduced to only a few ounces permeal at the beginning. Certain foodsand beverages must either be eliminat-ed or severely restricted. Physicalactivity is a vital component. Optimalexcess weight loss will not occur ifexercise is not a part of the newlifestyle.

Life-long vitamin and mineral supple-mentation is required for those havinga malabsorptive procedure to avoidmalnutrition and bone loss. In additionto the routine tests done for the pre-transplant patient or transplant recipi-ent, regular blood tests are required tomonitor nutritional status. This moni-toring must be jointly provided by

The assessment of weight status of transplant candidates and recipients is now becoming a more-often used tool of

comprehensive management. Kidney patients face the samestruggles and frustrations as other individuals who need to

Gastric Bypass Surgery… An Answer forTransplant Recipients?� By Nancee Vander Pluym, MS, RD


Nancee VanderPluym, MS, RD


THIS IS A COMMON CALL that I get. It is the hardest to resolve when it happens before a weekend or holiday,late in the afternoon, or when the person is almost out of medications.

My first piece of advice is to refill your prescription several days before you are out of medicine. This gives everyone timeto figure out if there is a problem and how to resolve it without putting your transplant at risk. Below is a list of possiblereasons why the pharmacy may not be refilling your prescription:

“The Pharmacy Won’t Fill My Prescription…!”� By Lara Tushla, LCSW, MSW

QUESTION TO ASK LIKELY PROBLEM SOLUTION

Is the prescription stillgood?

Prescriptions can only be writtenfor 12 months at a time.

The doctor’s office will need to provide a new prescription.This can often be done by phone or fax. Ask the pharmacy tocall your doctor’s office.

Do you take my insurance?

Some prescription plans only workwith certain pharmacies.

Does the pharmacy have your cur-rent insurance information?

The pharmacy may know which other pharmacy you shoulduse. If not, contact your insurance company to find out whereyou need to go for the best coverage.

Make sure the pharmacy has your most current insuranceinformation.

Is it too soon to refill myprescription?

Most insurance plans will not letyou refill a prescription until theweek before you run out.

If you run out before your official refill date, the answerdepends on why this happened. • Did you lose some of your medicine? If so, the pharmacy can try to

get approval to fill early. Some insurance plans will deny this andyou will have pay for replacements.

• Are you going on vacation and need to stock up before you leave?Most insurance plans will allow for early refills for vacations.

• Did your prescription change and you are now taking more of themedicine? With an updated prescription, the pharmacy should beable to fill the new prescription without trouble.

The pharmacy should be able to handle the first two optionswith the insurance company directly. The pharmacy will needto talk to your doctor’s office for the last one.

Is there a similar medicinethat my insurance wouldcover?

Most insurance companies havelists of preferred drugs. This iscalled a “formulary.” Your drugmay not be “on formulary.”

If a similar drug would be covered, ask the pharmacist to callyour doctor’s office to see if that switch can be made safely. Ifso, the pharmacist can request a prescription. If not, there is aprocess to “override” the formulary. Ask the pharmacy if theywill handle this, or if your doctor’s office has to be involved.

Does this drug need “priorapproval”?

Some drugs are so expensive, orso rarely used, that the insurancecompany wants to make sure thatyou really need it.

Ask the pharmacy if they will handle the prior approvalprocess or if the doctor’s office needs to be involved.Sometimes a letter from the doctor or recent lab tests arerequired. Ask the pharmacy to call your doctor’s office aboutwhat information they need.

Do you bill Medicare?Not all retail pharmacies doMedicare billing.

If your pharmacy does not work with Medicare, contact yourtransplant team for suggestions about pharmacies that workwith Medicare recipients.

See page 11 for a special factoid.

If you are not able to solve the issue with the pharmacy, call your doctor’s office or transplant team. Don’t skip medicines. TC


Bipartisan effort to get OrganRecovery and ImprovementAct fully funded in the fiscalyear of 2006 begun in theHouse and Senate

MORE THAN 50 MEMBERS ofthe U.S. House of Representativesand 20 senators signed “DearColleague” letters urging fullfunding in the fiscal year (FY)2006 for the Organ Recovery andImprovement Act (PL 108-216).Reps. Michael Bilirakis (R-FL),Vice Chairman of the House,Energy and CommerceCommittee, and Jay Inslee (D-WA) led the effort in the Housewhile Senate Majority Leader BillFrist (R-TN) and Chris Dodd (D-CT) provided the leadership inthe Senate.

The letter, sent to members of theHouse Subcommittee on Health,makes the case that increasing thenumber of organs available fortransplantation has the “potentialto actually reduce future Medicareexpenditures.”

Here is the bulk of the text of theHouse “Dear Colleague” letter:

“There are currently over 88,000Americans awaiting organ trans-plantation; over 6,000 this yearwill die, never having received apotentially life-giving organ. Tocombat this trend, Congress enact-ed the Organ Donation RecoveryImprovement Act (Public Law108-216) to reduce organ donationbarriers and improve organ dona-tion and recovery rates. We are

asking the Committee to continuethis effort by fully funding the ini-tiatives established by this law forFiscal Year 2006, includingexpanding public awareness pro-grams, strengthening our organprocurement infrastructure, andreimbursing expenses incurred byliving donors.

“The Organ Donation andRecovery Act authorizes $25 mil-lion in FY 2005 and ‘such sumsnecessary’ for the fiscal year 2006and onward. However, the billwas not funded in FY 2005 due, inpart, to its enactment late in theappropriations cycle. As a result,FY 2006 is a critical year toachieve funding. We ask that theCommittee provide an initialappropriation of $25 million toimmediately begin implementationof the critical programs authorizedunder the law.

“We are encouraged by the recentnews that nearly 27,000 Americansreceived an organ transplant in2004, setting a new nationalrecord and marking the largestincrease in organs from deceaseddonors in the past 10 years. Fullyfunding the [Act] will build on thecurrent efforts by the federal gov-ernment, states, and other entitiesto promote organ donation, reducethe waiting list, and improve thepractice of organ recovery, so thatmore Americans may receive thegift of life.

“Additionally, by fully funding the[Act], we have potential to actual-

ly reduce future Medicare expen-ditures. By its own estimate,Medicare would avoid directdialysis costs, which routinelyexceed $55,000 per patient peryear for each patient transplant-ed. Because of the shortage ofdonated organs from deceaseddonors, the current median wait-ing time from being placed onthe waiting list (at the state of apatient’s disease where dialysisbecomes necessary to sustainlife) to transplantation nowexceeds four years. Therefore,for every new donor facilitatedby this program Medicare wouldsave a minimum of $220,000over four years. Four-year sav-ings to Medicare (from patientstransplanted in FY 2006 alone)would exceed $110 million. Asimilar four-year savings wouldaccrue on a continuing basis foreach subsequent year.”

Death rates for patientsawaiting liver transplantsdown; use of ExtendedCriteria Donors kidneys up,HRSA annual report findsDEATH RATES FOR PATIENTSawaiting livers is down consider-ably over the past 10 years; theuse of expanded criteria donor(ECD) kidneys is growingsteadily; and the survival rate forlung transplant recipients isexpected to rise in the next fewyears.

These are just a few examples ofinformation contained in the

Transplant News DigestTransplant News Digest

Jim Warren

from the editors of Transplant News� By Jim Warren, editor and publisher

Transplant News, edited and published by Jim Warren, is a twice-monthly newsletter for the transplant commu-nity focusing on developments in organ, tissue, eye and bone marrow procurement and transplantation. TransplantNews Digest is written exclusively for quarterly publication in Transplant Chronicles. For more information aboutTransplant News visit: www.trannews.com

Continued on next page


Fourteenth Annual Report onTransplant Data, published by theHealth Resources and ServicesAdministration (HRSA) of the USDepartment of Health and HumanServices (HHS). The new reportsummarizes official and definitivedata on solid organ transplantationin the U.S. from 1994 to 2003.

The report, which is prepared jointly by the Scientific Registry of Transplant Recipients (SRTR)and the Organ Procurement andTransplantation Network (OPTN),contains data of interest to theentire transplant community,including medical professionals,patients and researchers.

The full report features 10 chapterswritten by more than 50 nationalexperts in transplantation, analyz-ing data and identifying trends intransplantation over the pastdecade. One of the “special focus”chapters featured in the new reportexamines various ways to measureorgan donation rates by donationservice area, which has implica-tions for improving overall rates oforgan donation. All 10 chapters,which were coordinated by SRTR,have just been published as a spe-cial issue of the American Journalof Transplantation.

The OPTN/SRTR Annual Report isbeing published exclusively inelectronic formats—on a CD-ROMand on the Web. The full report isavailable at the SRTR’s andOPTN’s Web sites: www.ustransplant.org andwww.optn.org Free CD-ROMs of the report may be ordered ateither site.

Here are some examples of theinformation from the press releaseannouncing the availability of thepublication:

Death rates for patients await-ing livers have decreased con-siderably in the last 10 years,from 225 to 124 deaths per1,000 patient years. Death

rates following liver transplan-tation have also shown adeclining trend over the decade,dropping from 197 to 156 deathsper 1,000 patient years.

The number of people livingwith a functioning allograft hasmore than doubled over thepast decade, rising from 69,345to 153,844 in 2003. Whilemost of the recipients have kid-ney grafts, the prevalence ofthose living with functioninggrafts has been increasing morequickly for most other organs.Compared to 1994, there werethree times as many lung recip-ients living in 2003, as well assix times as many pancreasrecipients and eight times asmany intestine recipients.

The use of expanded criteriadonor (ECD) kidneys—thosewith higher risk of long-termfailure due to donor age andmedical history—has continuedto grow in response to theshortage of organs. ECD kid-neys were used in 16 percent ofkidney transplants in 2003, upfrom 11 percent in 1994, and15 percent in 2003.

The number of donors aftercardiac death (DCD) has alsobeen growing, from 57 in 1994to 189 in 2002 and 271 in2003.

A new lung allocation system,approved in June 2004, isexpected to maximize the sur-vival benefit of lung transplan-tation. The new system is notbased solely on waiting time,but incorporates a measure ofhow long patients are expectedto live after receiving a trans-plant (versus remaining on thewaiting list).

Coalition study says only onethird of Americans understandorgan donor process

ONLY ONE THIRD of Americansunderstand the proper steps formaking it known that they want tobe an organ and tissue donor,according to a new survey releasedto coincide with the beginning ofApril—National Donate LifeMonth in the U.S.

The survey of 4,500 Americansfound that while an overwhelmingnumber of Americans said theysupport organ and tissue donation-90 percent—only 34 percent knowthe proper steps for committing todonation, according to the Coalitionon Donation, the nonprofit allianceof national organizations and localcoalitions, that commissioned the survey.

Not all of the 90 percent werecomfortable with donation, howev-er. Only a little more than half (56percent) indicated they would bewilling to donate their own organsand tissue. Another 28 percent saidthey are undecided and 6 percentindicated they would only be comfortable donating certainorgans or tissues.

“The gap between those who sup-port organ and tissue donation intheory and those who actuallybecome donors is colossal andtroubling and must be bridged ifwe are to meet the (growing) needfor organs and tissues,” said G.David Fleming, Director of theCoalition. “Just as vital is the needto educate willing donors about thesteps they need to take to committo donation. We hope to utilizethis research to find more effectiveways for turning this overwhelm-ing public support into practical,life-saving action.”

The survey, the first of its kind in13 years, unearthed some otherinteresting findings…18 percent ofthe respondents had the impression


that physicians may be lessinclined to provide life-savingtreatment to prospective donors,and a significantly higher percent-age (44 percent) said they “some-times don’t trust the medical com-munity,” although they have a highdegree of confidence in their ownpersonal physicians.

Procedures for becoming an organand tissue donor vary from state tostate. The Coalition on DonationWeb site contains information onhow to become an organ and tissuedonor in each state. Those stepscan be found by clicking on theU.S. map on the coalition’s Website: www.donatelife.net

International standards of carefor live donors adopted by TheTransplantation Society

ABOUT A YEAR AGO, more than100 experts in transplantation fromall over the world gathered inAmsterdam, the Netherlands, witha goal of developing a consensuson an international standard of careregarding the responsibility of thecommunity for the live kidneydonor. The end result was to be aposition statement that would beadopted by the TransplantationSociety.

The conference report, A Report ofthe Amsterdam Forum On the Careof the Live Kidney Donor: Data andMedical Guidelines, was publishedas a supplement in the March 27issue of Transplantation(Transplantation 2005; 79: S53-S66).

Here are portions of the interna-tional Standard of Care with aposition statement adopted by theCouncil of the TransplantationSociety that is included with thefull report in Transplantation:

“The international transplant com-munity recognizes that the use ofkidneys from the living donorneeds to be performed in a mannerthat will minimize the physical,

psychological and social risk to theindividual donor and (that) doesnot jeopardize the public trust ofthe health care community. Thedonation decision should be per-formed in an environment thatenables the potential donor todecide in an autonomous manner.

“Because of the need for moretransplantable kidneys, personswith conditions that may increasethe health risks for the potentialdonor and/or recipient (for exam-ple, hypertension) are currentlybeing considered and used asdonors. The international transplantcommunity recommends that theacceptance of such individuals askidney donors be conducted in anethical manner, accounting for theautonomy and safety of the donorand with rigorous attention to clini-cal outcomes.”

The statement contains a numberof detailed recommendations to befollowed “in view of the evolvingtrends in living kidney donor trans-plantation.”

They include:The donor must receive a com-plete medical and psychosocialevaluation prior to donation.

The donor must be informed ofall of the potential risks,including impact on futurehealth care; the risk of death;expected transplant outcomes.

The donor must be informed ofalternative therapies available.

The decision to donate must bevoluntary.

The transplant center hasresponsibilities post-transplant.

A health care professionaladvocating the welfare of thepotential donor should be provided.

Medical evaluation and concur-rence by the donor is essential.

Minors less than 18 years ofage should not be used asdonors.

The final recommendation in theconsensus statement adopted bythe Society calls for the establish-ment of an international donor reg-istry. “A international registry for‘sentinel events’ after living kidneydonation should be established andmaintained (including the record-ing of donor deaths or the need fordialysis or kidney transplantationby the donor). Appropriateprospective research shouldaddress the long-term outcomes ofdonors considered to be at poten-tially increased risk for adverseevents.”

A two-page summary of the state-ment can be viewed online at:www.kidney.org/recips/livingdonors/pdf/newsConsAmstershort.pdf

The full statement can be viewedat: www.kidney.org/recips/livingdonors/pdf/newsConsAmsterdamlong.pdf

California finally launchesstatewide organ/tissue donorregistry

AFTER SIX YEARS of unexpect-ed budget problems, exacerbatedby the state’s fiscal woes and legalhaggling over such things as dataprivacy, California finally joined36 other states in the U.S. withdonor registries.

With the launch of the new DonateLife California Organ & TissueDonor Registry on April 4,California joined 24 other states thatallow individuals to indicate theirwishes to donate their organs and tis-sues after their death. The new reg-istry even allows the signer to e-mailtheir intentions to family and friendsafter they have signed up.

In the first 10 days after the reg-istry opened, more than 160 media


stories statewide “helped to inspiremore than 25,000” to register onthe Web site.

The registry can be accessed atwww.DonateLifeCalifornia.orgor the Spanish-language site,www.doneVIDAcalifornia.org Itis operated by Donate LifeCalifornia, a nonprofit organizationthat operates the registry for thestate’s four designated organ andtissue procurement organizations—Golden State Donor Services inSacramento, California; TransplantDonor Network in NorthernCalifornia; Lifesharing in the SanDiego area; and OneLegacy in theGreater Los Angeles area.

International Society for Heartand Lung Transplantation toreview prioritizing treatmentsfor heart and lung transplant candidates

CITING NEW ADVANCES inheart and lung transplant medicine,such as beta-blockers, ventricularand assist devices, and stem celltransplants, the InternationalSociety for Heart and LungTransplantation (ISHLT) has initi-ated a review of the process for prioritizing heart and lung trans-plant candidates and determining

the treatments they receive. Thereview began in early April,ISHLT announced in a pressrelease.

ISHLT has created several taskforces to review criteria for placingpatients on a waiting list for adonor organ as well as pharmaco-logical, surgical and device-basedinterventions to successfully bridgepatients-to-transplant.

Guidelines will be presented to theISHLT’s membership on perform-ance, interpretation and use ofstress testing to guide patient list-ings, as well as when and how touse invasive catheterization. Theproposed guidelines also expandthe limitations of previously estab-lished contraindications to trans-plantation, such as age, diabetes,peripheral vascular disease, renalinsufficiency and a history of cancer.

Patients with damaged kidneysalso prone to develop heartproblems, study finds

PEOPLE WITH DAMAGED KIDNEYS are prone to a chainreaction that increases their risk ofheart problems, according to a new study.

Researchers at WashingtonUniversity in St. Louis used micein a study which followed thechain reaction: the kidney damageleads to a weakening of the skele-ton, which in turn leads toincreased phosphorous in theblood. The higher phosphorouslevels are linked to vascular calci-fication—a stiffening of thesmooth muscle cells that are inblood vessels.

The study found that vascular cal-cification leads to enlargement ofone of the heart’s four chambersthat creates increased risk for con-gestive heart failure, heart attackand other cardiac problems.

Injection of BMP-7 stopped vascu-lar calcification. In another group,mice were injected with a sub-stance that binds compounds withphosphorous but had no effect onthe skeleton. The substance alsostopped vascular calcification,indicating that phosphorous wasthe key link, the researcherswrote. TC

THE NATIONAL KIDNEYFOUNDATION (NKF) has estab-lished “People Like Us,” a move-ment to empower and enable trans-plant recipients, living donors, donorfamilies and kidney patients tobecome effective national and grass-roots advocates on issues related totheir health care.

To kick off the People Like Us ini-tiative, the NKF held a series ofadvocacy and empowerment activi-

ties in Washington, D.C. in May2005. One hundred advocates wererecruited from around the country tolearn about the need for and impor-tance of participation in both nation-al and grassroots public policy ini-tiatives, and about the skills requiredto become persuasive and confidentspokespeople.

Who can become a part of PeopleLike Us? Kidney patients, trans-plant recipients of all organs, living

donors, donor family members, andothers affected by kidney disease,transplantation and donation. Withthe energy and input of all, PeopleLike Us can become the largest andmost influential group of advocatesin the transplant, donation and kid-ney communities.To sign up forNKF's patient empowerment initia-tive, contact the National KidneyFoundation at [email protected] or 800-622-9010. TC

NKF's Patient Empowerment Initiative Launched


My immunosuppression was loweredand I received five infusions, onceevery other week, along with anti-viral medication to treat the virus.The results of my next biopsy, howev-er, confirmed kidney failure. I wasgoing to lose my kidney because Iwas curing the virus! I was confusedand a little scared. Then I was told Ishould get back on the kidney trans-plant list.

I had to go back on kidney dialysisand felt it was the worst thing. Previ-ously, I’d done dialysis for three and ahalf years and had learned to dealwith it. I couldn’t accept that my kid-ney was failing again. I took largeamounts of steroids to counteract the

rejection, but the virus was too muchfor my kidney and eventually I had togo back on dialysis for the third time.

I had to force myself not to despair.About this time two of my closefriends came down with very seriousillnesses. One had cancer and theother had a failing liver. My friends’struggles with these serious illnesseswere enough to show me how lucky Ireally was to have dialysis to fall backon. My attitude improved, I went backon a regular routine of dialysis andnow I’m doing fairly well. I’m hold-ing my own. My wife, Georgene and Igo square dancing every week and goRV-ing as much as we can. Yes, I planto have another kidney transplant. I

am on the waiting list. Unfortunately,the waiting time increases every year.I estimate I’ll have to wait four to fiveyears. Transplantation allows for amore enjoyable, normal and lessrestricted life than dialysis, so it’sworth waiting for.

Joe Belarde has been married 42years to Georgene. They live togetherin San Jose, and have three childrenand five grandchildren. TC

ABOUT TWO YEARS AFTER MY SECOND TRANS-PLANT, my kidney biopsy revealed signs of kidney rejec-

tion or failure. The results indicated that I had come downwith BK virus. I didn’t know how serious this virus could be.

My Experience With BK Virus � By Joe Belarde

Joe Belarde hiking in the SierraMountains.

DID YOU KNOW…Medicare Supplement Plans pay the copays and deductibles afterMedicare Supplements pick up the20 percent of your anti-rejectionmedications. This includes QMB(Qualified Medicare Beneficiary)which is a Medicaid program forpeople who have Medicare and meetcertain income guidelines (usuallymore than regular Medicaid guide-lines). Not all pharmacies are set upto do this more complicated billing.You may need to switch to a pharma-cy that specializes in transplantrecipients. Ask your transplant teamfor recommendations. TC

bariatric and transplant professionals experienced in thelong-term management of gastric bypass procedures.

Existing medical conditions greatly improve, as weightloss occurs. Medications to treat pre-existing diseasescan be reduced or even eliminated. If, however, weightloss is not maintained, these conditions will return andrequire intensive medical treatment. Gastric bypass sur-gery provides the individual with a tool. How well thistool is used will determine how much weight is lost,and how well the loss is maintained. To maintain life-long success, a commitment to changing and develop-ing new lifestyles and dietary habits is essential.

Nancee Vander Pluym, MS, RD, is a TransplantNutrition Specialist at Banner Good SamaritanTransplant Service in Arizona. She also works in theBariatrics Program.

Editor’s Note: Our next issue will feature a recipient’sexperience with gastric bypass. TC

Gastric Bypass Surgery…Continued from page 5


For five months in 1996, I once againendured the agony of hemodialysis.During this time, my first cousin,Elijah—who I call “my brother,”offered me one of his kidneys. I didnot know how to feel because I wor-ried how it would affect his health.Iknew I’d be okay because, eventhough I dreaded dialysis, it hadbecome a part of my life I’d learned toaccept. Besides, dialysis was helpingme to survive.

We underwent a series of tests tocheck our compatibility. When Elijahand I found out we were compatible,he did not want to wait a minutelonger. Once again, through the mira-cle of transplantation, I’ve managed toaccomplish more, and it’s all thanks tothe love of my family!

After this transplant, I followed myheart and obtained certification tobecome a Certified HemodialysisTechnician. As a Patient Care Techni-cian I administered care at the unitwhere I was once a patient. Givingback is a big deal for me. My heartfills with joy when I can make a differ-ence to one person like myself. I grad-uated from college and married mychildhood sweetheart. These thingshelped me to continue to reach for the stars!

I’ve had my share of ups and downswith transplantation, but the way I see

it is: we take chances in life and wehave to take the bitter with the sweet,and the good with the bad.

After my second transplant, I had sev-eral major surgeries. The surgeon saidthere was a chance of kidney failure.Fortunately, that did not happen for along time. I survived seven and a halfwonderful years with Elijah’s kidney.

I believe that success is a state ofmind, an attitude obtained through theright combination of setting reasonablegoals, taking action and overcomingthe fear to take risks!

I lost the kidney in 2004 and I felt hor-rible about it. I thought Elijah wouldbe upset, but he said “It’s not your

fault. What’s important is that you arealive and well!” My family is amaz-ing! I will never take my family orfriends for granted because, without“my support team,” I don’t know if Iwould have made it this far.

Later in 2004, I underwent my thirdtransplant. This time, another firstcousin, Malik, who is also a “brother”to me, stepped up and offered me oneof his kidneys. Since Malik is thebaby of the family, I was nervousbecause I was concerned about hishealth, too. As the eldest, I wouldnever want my loved ones to experi-ence what I have. But the doctors doextensive testing to make sure thedonors are physically, mentally andemotionally fit, and they reassured usthat the possibility of a donor’sremaining kidney failing is remote.

The enormous support I have gottenfrom family and friends has beentremendous. They educated themselvesabout my medical condition.

I am doing extremely well since thethird transplant. Undergoing threetransplants is a decision I’ve madebecause transplantation works for mephysically, mentally and emotionally.I believe every dialysis patient shouldconsider transplant. It’s worth theexperience. “Don’t knock it, unlessyou’ve tried it!” TC

Malik (3rd donor) and Leslie

For the Love of FamilyContinued from page 1

ON MAY 3, 2005, REPS. DAVE CAMP (R-4TH, MI)AND TED STRICKLAND (D-6th, OH) introducedH.R. 2051, to eliminate the 36-month limitation forcoverage of immunosuppressive drugs for MedicareESRD beneficiaries. The legislation would providecontinued entitlement to coverage for immunosuppres-sive drugs furnished under Medicare Part B, providingthe same lifetime immunosuppressive coveragepresently available for Medicare aged and Medicaredisabled (SSDI) transplant recipients.

Let your Member of the House of Representativesknow that this bill is important! To find out who yourHouse Representative is, follow these steps on theInternet:

1.) Go to www.kidney.org 2.) Click on "Government Relations."3.) Scroll down to "Government Officials."4.) Click on "Find your Member of Congress."5.) Enter your zip code.

Also join NKF's People Like Us ([email protected]) to add your voice to the voice of thou-sands fighting for legislative change.

H.R. 20051 Aims to Extend Medicare Coverage of Immunosuppressive Drugs


Back injuries are also associated withstress. They are also caused by acci-dents and environmental factors such aspoor workstation set-up. Back injuriescan either be cumulative or caused byisolated traumatic events, such as afalls and automobile accidents. Backinjuries generally affect men andwomen equally and most frequentlyoccur in people between the ages of 25 to 45.

POSTUREPosture is animportantaspect of bodymechanics. Inorder to under-stand whatgood postureis, individualsmust firstunderstand theconstructionand function ofthe spine. The

spine consists of 29 bones known asvertebrae, which provide support andflexibility to the body. The vertebraeare separated by discs, which help toabsorb shock and provide protection tothe spinal nerves. The muscles and lig-aments provide support, add stability,and control motion of the spine.

The balance between forward bending(cervical and lumbar regions) and backward bending (thoracic and sacralregions) of the spine defines good posture. Well-balanced posture placesthe least amount of stress to the joints,ligaments, discs and muscles of thespine. Proper body mechanics and posture depend on the alignment of the musculoskeletal structures while sitting, standing or sleeping.

• SHOULDERS back• HEAD over shoulders

and chin tucked• Lower BACK curve

maintained with a pillow or towel roll

• HIPS and knees at a 90-degree angle

• FEET resting on a flat or slightlyinclined surface

• HEAD, SHOULDERS,HIPS, KNEES andANKLES are aligned

• WEIGHT is evenly dis-tributed to each leg

• KNEES are straight orslightly flexed

• USE a firm mattress• SLEEP on side with knees bent and

pillow(s) placed between knees• SLEEP on back with pillow(s) under

knees• DECREASE the amount of pillows

used under head

BODY MECHANICSAttention to body mechanics is impor-tant. Through its proper use, individualscan reduce the amount of stress andstrain on the musculoskeletal structureof the spine. This also conserves ener-gy, produces safe, efficient and effec-tive movements, and helps to maintainproper balance and control of the body.

Individuals who must lift, reach, push,pull and carry objects should use good

body mechanics. This will help preventtrauma to the spinal structures. Beforeperforming these tasks, all obstaclesshould be cleared from the work area,and the manipulated objects should bekept close to the body.

Lifting RecommendationsLower back stress and strain can bereduced by following these steps:1. INSPECT THE OBJECT and decide

the best way to hold it.2. TEST THE LOAD by lifting the

object a couple of inches from theground or by pushing the object withyour feet to ensure that the objectcan be moved safely.

3. PLAN THE LIFT—Decide wherethe object is going to be placed.

4. KEEP YOUR FEET at least shoulder-width apart to increasestability and balance.

5. BEND YOUR HIPS and knees inorder to be closer to the center ofgravity of the object.

6. KEEP YOUR HEAD UP in order tomaintain low back curvature.

7. LIFT WITH YOUR LEGS and in avertical motion.

8. MOVE YOUR FEET to avoidtwisting.

Reaching RecommendationsPlace frequently used items withinclose reach. Items should be placedbetween waist and shoulder height toreduce strain to the spine and upperextremities from bending at the waistor from over-reaching. Use a footstoolor a ladder to retrieve/replace itemsplaced above head level. Keep yourhead up. Avoid reaching and twisting atthe same time.

Pushing/Pulling RecommendationsPush rather than pull objects if possi-ble. Square yourself to the object. Useyour legs and arms instead of the backto perform the task. Try to keep yourarms slightly bent when pushing. Moveobjects in a straight line and try to keepthe pushing/pulling force parallel to the ground.

MOST BACK INJURIES are associated with poor posture, body mechanics and work habits. Body

mechanics means the way individuals move their bodies.

Preventing Back Injuries Through Body Mechanics� By Cynthia Tilley, MS, OTR, CEAS

Recommendations forgood sitting posture:

Recommendations forgood standing posture:

Recommendationsfor good sleep

posture:



Diabetes affects millions ofAmericans and nearly 1,700

patients are on the waiting list for apancreas transplant (UNOS 2005).Another 2,400 people are waiting fora combined kidney and pancreastransplant, due to renal failure causedby diabetes. People with diabetesexperience progressive organ damagedue to an insulin imbalance. Type 1diabetes (formerly called juvenileonset diabetes) usually strikes early inlife. The islet cells that produceinsulin are destroyed by the body’sown immune system. When thisprocess begins, the body is unable toconvert glucose to the energy neededfor normal cell function.

Pioneered by Dr. James Shapiro, Dr.Jonathan Lakey, et al. who publishedin 2000, human islet cell transplanta-tion has been performed at more thantwenty medical centers around theworld. Nearly two hundred Type 1diabetics have received this therapy.Islet cell transplants are being per-formed in adults with otherwise goodgeneral health between the ages of18-60. Candidates for this procedureare those who are unable to managetheir diabetes without suffering fromsevere insulin reactions.

Until now, pancreas transplantationhas been the most commonly per-formed therapy to replace the isletcells that can no longer produceinsulin. Although pancreas transplan-tation is quite successful, it is a majorsurgery with associated risks that usu-ally require steroid use as part of theanti-rejection therapy. The goal ofislet cell transplantation is to replacethe non-functioning islet cells withouttransplanting the whole pancreas. Anadvantage of this strategy is that itavoids the necessity of steroid use.Steroids can damage islet cells andare therefore contraindicated in theanti-rejection therapy program.

Perfecting the technique needed totransplant islet cells has been a chal-

lenge. Roughly one million cells areneeded to successfully transplant isletcells in an average-sized person. Inorder to harvest so many cells, a mini-mum of two pancreases from recentlydeceased donors have to be used.After being extracted from the wholeorgan, the cells are prepared and theninfused into the recipient’s liver viathe portal vein. Islet Cells adapt to theenvironment of the liver, but theymust mature before they are capableof producing insulin. Thus, the recipi-ent may need to continue using insulinto control blood sugar levels. In somecases a second infusion of islet cells is necessary before insulin can be discontinued completely.

The success of islet cell transplanta-tion depends on the timely extractionof the cells from the deceased donororgan. The recovered islet cells needto be ready for infusion into the recip-ient within 48 hours from the time ofremoval from the donor. This requiresspecialized equipment and laboratorypersonnel knowledgeable in islet cellmanagement.

Future challenges for implementingislet cell transplantation include find-ing ways of increasing the number ofcandidates who qualify for this proce-

dure, increasing the number of sur-geons trained to perform it and find-ing a way of alleviating the continu-ing national problem caused by ashortage of donor organs from whichislet cells can be extracted. Carefulselection of donor organs and appro-priate recipients are important con-tributors to the outcomes. Hopefully,this procedure can be offered in thefuture, either after or in conjunctionwith kidney transplantation. This willeffectively help recipients to avoiddiabetic complications of transplanta-tion. To accomplish this, the scientificcommunity must develop improvedsteroid free anti-rejection medicationprograms and continue to educate thepublic on the importance of organdonation.

Dr. Kudva is an Assistant Professor of Medicine and a Consultant in theDepartment of Internal Medicine atthe Mayo Clinic. He is involved withnumerous committees and projectswith the Kidney/Pancreas TransplantProgram and the Division ofEndocrinology, Diabetes, Nutritionand Metabolism. TC

Carrying RecommendationsAlternate objects from one hand tothe other. Balance the load of theobject being carried. Long objectsshould be carried in front for control.Heavy objects can be carried on theshoulder. Whenever possible, use adolly or a cart to transport objectsinstead of carrying them.

IN SUMMARY, proper bodymechanics assist in providing balance and stability to the spine.Individuals can help reduce the risk of back disorders by exercising,

maintaining flexibility, keepingweight down, and wearing good sup-portive shoes. To avoid back injury, itis most important to avoid loads thatare too heavy.

Cynthia D. Tilley, MS, OTR/L, CEAS,is an Occupational Therapist andErgonomic Specialist for theUniversity of Maryland MedicalCenter. She has been practicing occu-pational therapy for over nine yearsin the areas of acute care, acute andsubacute rehabilitation settings, andergonomics for over four years. TC

Preventing Back Injuries…

Islet Cell Transplantation: New Therapy for Diabetes� By Yogish Kudva, MD

Continued from page 13

Yogish Kudva, MD


I am a person living with HIV/AIDS(18 years) and Hepatitis B (36

years). After I learned that I had liverdecomposition in 1999, I was told thattransplantation was not an option. Myprospects looked grim. Then in 2000,transplant centers began a studyinvolving transplantation in individu-als with HIV. This gave me hope thatI would someday be put on a trans-plant waiting list and in 2002, I was. I underwent liver transplantation inMay 2004. Today, I am doing very

well with my anti-rejection and anti-retroviral medications and am opti-mistic about the future. Organ dona-tion is a selfless and generous gift oflife. Transplantation may be a viableoption for individuals living with HIVand liver decomposition. I am one ofseveral people in the country who areliving examples of how far medicalscience has advanced in saving thelives of those with co-infections(HIV/ hepatitis or HIV/nephropathy).

George Martinez is anadvocate fororgan donation.He is a memberof the NationalCommunity Advisory Board for theSolid Organ Transplantation in HIV:Multi-Site Study. TC

An HIV and Transplant Study Saved My Life� By George Martinez

Increasing numbers of patients withend stage liver and kidney disease areseeking transplantation. People withHIV infection have been consideredineligible for organ transplantation inthe past for two important reasons.First, HIV shortened their expectedlife spans, making them less likely tobe viewed as viable candidates bytransplant centers who tended todecide which patients receivedorgans, based on how likely they wereto survive after the procedure.Secondly, it was thought that the anti-rejection drugs required by post-trans-plant patients could hasten theprogress of HIV and thereby increasethe number of deaths.

Poor survival is no longer a reason to deny a transplant to aperson with controlled HIV.

Due to advances in treatment, peoplewith HIV/AIDS are living longer,healthier lives. Excluding them fromconsideration for organ transplanta-tion based only on the length of timethey may live can no longer be con-sidered a valid policy.

Small pilot studies are showing goodoutcomes. Nevertheless, these find-ings must be duplicated in a larger,longer study in order to determinethat solid organ transplantation inHIV-positive people is safe and effec-tive, to find which patients are mostlikely to benefit from transplantation,and determine who would be atgreater risk with transplantation.Weneed to explore the possibility andextent of interactions between theanti-rejection drugs and the drugsused to treat HIV.

Understanding how these drugs inter-act in HIV-positive transplant recipi-ents will be essential to improving themanagement of anti-rejection therapyin these patients.

A study evaluating the safety andeffectiveness of kidney and livertransplants in a select population ofHIV infected individuals is currentlyunderway at 19 transplant centersacross the country. Information aboutHIV and transplant is available at:www.hivtransplant.com

Rodney Rogers is the ProjectManager of the Solid OrganTransplantation in HIV: Multi-SiteStudy at the University ofCalifornia. TC

George Martinez

PEOPLE WITH HIV DISEASE are at risk for kidney andliver diseases, just like people who do not have HIV.

HIV and Transplant� By Rodney Rogers

30 East 33rd StreetNew York, NY 10016

(800) 622-9010 www.transplantrecipients.org

� Has your e-mail address changed or have you recently gotten e-mail? E-mail [email protected] with your e-mail address and your membershipnumber located above your name on the label.

NONPROFIT U.S.POSTAGE

PAIDNEW YORK, NY

PERMIT NO. 5327

THEN & NOW: Kidney Transplantation in 1989 vs. Today

� By Jack Fassnacht

FACED WITH THE PROSPECT of a second kidney transplant, I attend-ed a meeting to learn about kidney transplantation for the second time in

my life and realized a lot had changed since 1989. Jack Fassnacht

LIVING DONA-TION HAS BECOME

MORE COMMON

To my surprise, many of the transplant candidates sitting with me were accompanied by

potential living donors. The percentage of kidney donations from living donors has

increased, from 32 percent of all kidney donorsin 1989 to more than half in 2004. This is

because there are not enough deceaseddonors and that medical advances have

helped make donors and recipi-ents more compatible.

THE WAITINGLIST IS MUCH

LONGERBack in 1989 there were 16,294 kidney

candidates. Today, 15 years later, the kidneywaiting list has grown to over 63,600. That's an

increase of almost 400 percent! I'm just speculat-ing, but the increase may have something to do

with the success of kidney transplantation aswell as the increase in the number of

persons suffering from diabetes and high blood pressure in

the U.S.WAITING

TIMES ARE LONGER

Although the waiting list has grown,the pool of potential donors has not

kept pace. Consequently, the average waiting time on the deceased donor kidney

waiting list has grown from less than two yearsto somewhere between six to eight years.

While this varies according to the candidate'sblood type and where one is listed,

the fact remains that waiting times have greatly

increased.

is a program of the national kidney foundation. volume 12 ... · the surgery went well and i was...

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