10 It’s Never Too Late to Say Thank You€™s Never Too Late to Say Thank You By Rosemary Halloran Costello Inside: Read about transplant today and yesterday. Inside we look at

Published by the National Kidney Foundation for transplant recipients of all organs and their families.© Copyright 2002National Kidney Foundation ISSN# 1524-7635

My wake up call came in 1969when I was 21. I went on a job

interview with a big name companyand was hired pending a backgroundcheck and a physical. Unfortunately,the physical showed blood in myurine and I was not hired. The causeof the blood in the urine was Lupus,but at 21 that didn’t seem like such abig deal other than it caused me tolose a job I wanted.

Within a year I understood howsignificant Lupus could be. I lost totalfunction of my kidneys and I ended upat Albert Einstein Medical Center inPhiladelphia, which had two dialysismachines and eight kidney patients. Atthe time I was the only female patient.We didn’t have fistulas in our arms;we had shunts and we were on dialysisthree times a week for six-hour treatments. The equipment looked likebig washing machines.

I had a truly wonderful, supportivefamily that had always been and stillare there when I need them. That yearmy brother Frankie, one of my threebrothers, donated his kidney to me and it worked terrifically for threemonths. Then, either through a massrejection or attack of Lupus, I lost the transplant.

It was another year on dialysis beforea cadaver kidney was found. A fatalcar accident took the lives of a motherand daughter. The donor family, whohad thought of donation during thetrauma of losing their loved ones, alsostayed at the hospital to donate bloodfor my transplant. That was 1969 andat that time we were not permitted to

have contact with the donor familyand there were no organ procurementorganizations. My family and I knewthe names and a little about the familybecause there was an article about theaccident in the newspaper and themention of donation.

I thought often of the family but itwasn’t until 1994, when I was readinga newsletter from my transplant centerand there was a reminder to thankyour donor family, that I ever tried tomake contact with my donor family.Twenty-five years later I found myselfwriting a letter that I forwarded to thenow local OPO, who of course had norecords of my transplant. With theinformation I was able to give themfrom the newspaper, however, theyfound the family and sent my letter.After two weeks passed, I received aresponse from the sister of the younggirl whose gift of a kidney I hadreceived 25 years earlier. She and herdad were thrilled to hear from me andsaid they were not surprised that thekidney was still functioning as hersister had always been a fighter andloved life.

So here I am 33 years later enjoy-ing life, married with a son andthankful and grateful for every dayof my life. TC

Transplant Chronicles is a Program of the National Kidney Foundation.

Spring 2002Volume 9, Number 4 10th Anniversary issue

It’s Never Too Late to Say Thank YouBy Rosemary Halloran Costello

Inside:Read about transplanttoday and yesterday.

Inside we look at liver,pancreas, heart and

kidney transplantationover the years…

Rosemary Halloran Costello

“That was 1969 and atthat time we were not

permitted to have contactwith the donor family and

there were no organprocurement

organizations.”

editor’s desk editor’s desk

Welcome to the 10th anniversaryissue of Transplant Chronicles!

In celebration of this issue we bringyou a new look and the transplanthistory of different organs. I’ve beeninvolved in transplant for 21 yearsand as I read these articles I thinkabout all the changes I have seen overthe years. Insurance now coversmore transplants and there are moremedications and anti-rejectionprotocols available. Successfultransplant takes into consideration thequality of recipients’ lives: returningto work, school and normal activitiesas well as how the recipient is feelingmentally and physically. Livingdonation is an accepted and growingpractice and is used not just forkidney transplant, but for partial lung,

Beverly Kirkpatrick Editor-in-Chief

2 Transplant Chronicles, Vol. 9, No. 4

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:Beverly Kirkpatrick, MSW, LSWEditor-in-ChiefA.I. duPont Hospital for Children Wilmington, DE

Weston Bush, PharmDUniversity Hospital of ClevelandCleveland, OH

Adela T. Casas-Melley, MDA.I. duPont Hospital for ChildrenWilmington, DE

Michael Cervantes, LCSW, MSWLoma Linda University Kidney CenterLoma Linda, CA

Robert Gaston, MDUniversity of AlabamaDivision of NephrologyBirmingham, AL

Suzanne Lane-ConradIowa Donor NetworkIowa City, IA

Kimberlee Rast, RDMethodist Specialty and Transplant HospitalTexas Transplant InstituteSan Antonio, TX

Vanessa Underwood, BS, AFAA, ACE,ACSM Fitness Trainer/Wellness ConsultantPlaistow, NH

Jim Warren, MSTransplant NewsFresno, CA

Alexander H. WhiteakerAttorneyNew York, NY

Laurie Williams, RN, CPTCUniversity of Nebraska Medical CenterOmaha, NE

Editorial Office:National Kidney Foundation, Inc.30 E. 33rd Street, New York, NY 10016(800) 622-9010, (212) 889-2210http://www.kidney.org

Editorial Director:Catherine Paykin, MSSW

Managing Editor:Sara Kosowsky

Production Manager:Emily Zelner

Design Director:Oumaya Abi Saab

Executive Editor:Gigi Politoski

National Kidney Foundation Seeks Nominations for2002 U.S. Transplant Games Awards

The American Society of Transplant-ation (AST) Award is presented to twoathletes who have furthered the causeof donation in their return to healthand productivity by raising awarenessabout the critical need for organ andtissue donation in their communities.The two categories are for athletesunder and over the age of 18.

The Mickey Mantle Courage Awardrecognizes a transplant athlete who hasovercome great challenges to particip-ate in the U.S. Transplant Games. Formore information on the AST andMickey Mantle Courage Award or torequest a nomination form, pleasecontact the National KidneyFoundation Transplant Athleticsdepartment at (800) 622-9010. All

nominations must be received by May 10, 2002.The Musculoskeletal TransplantFoundation (MTF) DonorCARE Awardwill be presented to an individual orgroup that has provided consistent andcomprehensive care to donor families.To receive more information on theMTF DonorCare Award or to request anomination form, contact the MTF at(800) 946-9008. Deadline fornominations is April 22, 2002.

The U.S. Transplant Games is abiennial, Olympic-style event open to recipients of every type of lifesaving organ transplant, includingkidney, liver, heart, lung, pancreas andbone marrow. TC

liver and pancreas transplant as well.While most living donors are familymembers of the recipient, the numberof unrelated donors is growing.

I have been with Chronicles since itsinception and I too am amazed howChronicles has grown with the help ofyou, our readers. Keep sending usideas, articles, jokes, photos andpoems. Chronicles is available to alltransplant programs and individuals.Let us know if a transplant program orrecipient you know needs copies bycalling the National KidneyFoundation at (800) 622-9010. Welook forward to another 10 years ofbringing you the most current infor-mation in transplantation. Have a greatsummer and I hope to see you at theTransplant Games. I’ll be the one with15 pediatric recipients in tow!

Beverly Kirkpatrick for the Editorial Board

TC

(New York, NY) The National Kidney Foundation iscurrently seeking nominations for three awards to bepresented at the 2002 U.S. Transplant Games to beheld June 25-29 at Disney’s Wide World of Sports™Complex.

2002 is the tenth year of publicationfor Transplant Chronicles. Fittingly, italso marks the 40th anniversary ofMurray and Merrill’s initial 1962report of successful kidneytransplantation between donors andrecipients who were not identicaltwins. Before the experience reportedin this landmark New England Journalof Medicine article, there was onlylimited success in human transplant-ation. Looking back, these 40 yearseasily segregate into four verydifferent decades. The first, 1962-1972, witnessed growing enthusiasmfor kidney transplantation to treatchronic kidney disease, and theestablishment of transplant centersaround the United States. Passage ofthe Social Security amendments of1972 ushered in a new era, withMedicare eligibility enabling kidneytransplantation to be offered to mostAmericans regardless of financialresources during the second decade.The introduction of cyclosporine in1983 was another landmark, and over the next 10 years, success ratesin kidney transplantation reached new heights: for the first time, itbecame possible to challenge thepremise that dialysis was the besttreatment for chronic kidney disease.The decade since1992 has beenequally momentous.

Unprecedented success… If youreceived a kidney in 1992, yourchances of experiencing acute rejectionat least once was 50 percent, and oflosing your kidney during the firstpost-transplant year, about 20 percent.The median survival time for a cadaverkidney was eight years, and for akidney from a living donor, 12-14years. Now, only about 20 percent of recipients require treatment forrejection, over 90 percent keep

Transplant Chronicles, Vol. 9, No. 4 3

A Decade of Remarkable Advances in Kidney Transplantation

By Robert Gaston, MD

their kidney at least a year and median survival time is 13 years forcadaver and over 20 years for livingdonor kidneys.

reflecting major advances... More precise tissue typing and cross-matching have allowed betterdetermination of appropriate donorand recipient pairs beforetransplantation. Newer immuno-suppressive drugs (Neoral®, Prograf®,CellCept®, Rapamune®, Zenapax®,and Simulect® were all approvedbetween 1994 and 2000) are moreeffective in preventing rejection, withfewer side effects. The total dose ofsteroids (prednisone) which patientsnow take is a fraction of what wasstandard 10 years ago. Antibiotics arealso less toxic and more effective. Wecan now successfully treat viral andfungal infections with potentmedications (including Cytovene®,Ambisone®, and Abelcet®) that caneradicate the disease withoutcompromising the kidney transplant,a goal only dreamed of in the 1980’s.

has changed the focus of clinicalcare… It is no longer appropriate todwell entirely on the transplant itself.Now, the principal factors determin-ing how long the kidney will functionreside outside the transplanted organ.What are the best doses of immuno-suppressant drugs for recipients afterfive years? After 10 years? After 20years? Who’s going to pay for thesemedications over such long periodsof time? How can their side effectsbe minimized? Can we reduce therisk of heart disease? Is the bloodpressure well controlled? How aboutthe cholesterol level? How oftenshould transplant recipients bescreened for cancer? In 1992, thebiggest challenges were rejection and

infection. We now have the luxury toaddress these broader long-termissues that must be overcome if ourpatients are to do even better.

and created new challenges. Nowthat kidney transplantation issuccessful most of the time, andprolongs life for those with kidneyfailure, how are we going to findsuitable organs for more than 50,000Americans who need them?Improving access for people withchronic kidney disease to transplantcenters and finding enough organs tomeet the need may be our greatestcurrent challenge. Fortunately, moreand more patients are referred fortransplantation early in the course ofdialysis. Cruelly, the supply ofcadaver kidneys is not growing, andaverage waits for a suitable kidneyexceed five years at many transplantcenters. There is now greateremphasis on utilizing living kidneydonors, and advances such aslaparoscopic nephrectomy have made the outlook for these generouspeople brighter than ever before.However, now more than ever, thoseof us involved in transplantationmust effectively communicate to all our brothers and sisters in thisgreat country the overwhelmingbenefit that comes from donatingorgans in the event of a loved one’suntimely death.

Yes, the last decade has been one ofhuge scientific advances withgrowing numbers of restored lives inkidney transplant recipients. Whatlies ahead? Hopefully, whoever iswriting this column 10 years fromnow will be able to look back oneven more dramatic successes. TC

medical beatmedical beat


When I used to think of donating,I thought of donating money to

the poor or clothing to the homeless.Last September, the word “donating”became an extraordinary and personalexperience. My name is PhilipCochrane, and I live in Salt Lake City,Utah. I recently had an experience Ifeel necessary to share.

In February of 2001 my father-in-law,Scott Parry, became very ill. Hecouldn't work or even get out of bedsome days. After many tests he wasdiagnosed with complete kidneyfailure induced by diabetes. Withoutfunctioning kidneys, Scott wouldeventually die of kidney failure. His only option was to be put onkidney dialysis.

Scott had little time for other things,including work and spending timewith his family. It was a devastatingtime for him and our entire family.

To ease the pressure on my mother-in-law, my wife and I decided to movein to their home and help with Scott'scare. Living with his illness every daymade me realize just how hard it wasfor him to go through this trial. Scottwasn't getting any better. He waslosing weight, becoming very weakand he was still very ill. The doctorsfinally told him dialysis wasn'tworking and it was time to find akidney donor. The search began for amatching kidney. Members of Scott'sfamily were tested but none of themwere a viable match, so we beganlooking to others, but we couldn't findanyone with the same blood type. Thevery next day at dinner, my mother-in-law, Kris, who is also a nurse,mentioned that there are rareoccasions when people of oppositeblood types have matched, but shequickly laughed it off because it's sorare. The conversation turned into ajoke about how I could be the match.Of course it was impossible—Scottand I have opposite blood types. He's

O positive and I'm A positive. Despitethe joking, I knew for a fact I wasgoing to be the match.

The next day, I called the transplantteam at LDS Hospital in Salt LakeCity, Utah, and asked to be tested. Thenurses reminded me of the rarity ofthis match, but said they would behappy to test me. They took about 10vials of blood and told me it would bea week before the test results were in.The week went by and I received aphone call at about 11:00 A.M. on aweekday from Glenda, a nurse on thetransplant team. She could barelyspeak. She was in shock. She said shecouldn't believe she was making thiscall. I was a perfect match and I wasgoing to be the donor. She said thematch was one in 20 million peopleand it was a miracle.

As soon as I got off the phone, I calledmy wife and in-laws to tell them thegood news. It was an incrediblemoment. They couldn't believe whatthey were hearing. It was the bestnews I have ever told anyone. After abrief physical, and more tests, the

transplant date was set for October 3,2001. Time flew by and the next thingI knew, I was in the hospital beingprepped for surgery.

A few hours later, I found myselfwaking up in the recovery room withmy wife and family by my side. Scottwas still finishing up in surgery whenI woke up, but the doctors said hisbody had already accepted the kidney,and he could plan on having aperfectly functioning kidney for atleast the next 15 to 20 years.

It's been three months, and Scott isdoing extremely well. He's gainedweight, he's back to work and helooks like he did five years ago.

He still has a journey ahead of him. Heinitially needs to take a plate full ofpills every day to prevent rejection andother complications caused from hisdiabetes. In time, some of the pills willgo away, but it's a small price to payfor the quality of life he's gained. Asfor myself, I feel great. I am thrilled tohave had the opportunity in my life todonate one of my organs to someone inneed. I truly believe everyone shouldbecome more aware of living organdonations. Most people will neverreceive the organ they need and willend up losing their lives because of it.Here's a quote from the NationalKidney Foundation: "Living donationis a beautiful and selfless gift madefrom the donor to the recipient with noexpectations of material compensation.If you would like to be an ‘anonymousdonor,’ contact a local transplant centeror your personal physician."

Philip Cochrane is the seniorassociate for a debt management/financial services company in SaltLake City, Utah. He and his wife,Heather, have been married for twoyears and have their first child on theway. Philip enjoys snow skiing, fly,fishing, wakeboarding and spendingtime with his family.

TC

A Rare Occasion: When Opposites AttractBy Philip Cochrane

Philip Cochrane (left) with ScottParry (right)


The birth of liver transplantationbegan in the 1950’s with

experimental transplants beingperformed on dogs. Most of this workwas done without anti-rejection drugs.In 1963, trials began for the use ofprednisone and azathioprine as anti-rejection drugs in kidney and livertransplants. Dr. Thomas Starzl, apioneer in liver transplantation, per-formed the first human liver trans-plants using these medications in1963. None of the patients survived.Between 1963 and 1967, the surgicaltechnique was improved and anti-lymphocyte globulin was introduced.The first successful clinical experiencewith liver transplantation was accom-plished by Dr. Starzl in 1967. Thesepatients received a combination ofazathioprine, prednisone and antilym-phocyte globulin and had a one-yearsurvival of 28 percent. Between 1967and 1979, Dr. Starzl improved theone-year survival rate to 34 percent.

Then came the introduction ofcyclosporine. The first clinical trialsof cyclosporine began in 1979 and anew era of transplantation began. Thenumber of liver transplant centers andof patients undergoing livertransplants skyrocketed. The 1980’swere a time of improvement ofsurgical technique and management ofanti-rejection medications. Improve-ments were made in treating complic-ations of surgery, infections andcomplications of anti-rejectionmedications. Significant advanceswere made in the allocation of organsand in the development of criteria forpatient selection. Then in 1989 FK-506 was added to the regimen ofdrugs available for the treatment ofrejection. This addition madesignificant improvements in thetreatment of patients immediatelyafter transplantation as well as in therescue of patients with chronic rejec-tion. The one-year patient survivalwas now at an incredible 89 percent.

So what was left to accomplish in the1990’s? With the success of the anti-rejection medicines and the expansionof the criteria for transplantation, thewaiting lists for both adult andpediatric patients became very long.Centers were reporting that up to athird of their patients were dyingwhile awaiting an organ for trans-plantation. Programs to improvepublic awareness and donationshelped a little but not enough. In thelate 1980’s the techniques of reducedsized and split liver grafts weredeveloped. By using these techniqueslarge organs could be cut down to asize appropriate for a small child orinfant. However, the reduced sizegraft discarded a portion of the liver.

Later, the split technique becamemore accepted. In this technique theliver is split into two pieces that canboth be used for transplantation. Withthis method two patients receive thebenefit of one organ. The technique ischallenging, and sometimes meetswith a slightly higher post-transplantcomplication rate, but it significantlyadds to the number of transplants thatcan be performed in a year.

In 1989, Dr. Christofl Broelsch, atransplant surgeon from theUniversity of Chicago, took thetechnique of splitting liver grafts onestep further and developed thetechnique for living donor transplant-ation. With this technique, a familymember can donate a portion of his orher liver for the patient awaitingtransplantation. At the time, thetechnique was limited to infants andchildren because of the size of theportion of liver removed. Thetechnique was very successful.Numerous children have beentransplanted using this technique withvery good results. The complicationrate among the living donors has beensmall. This technique added a newnumber of grafts to the pool of organsavailable for transplantation.

The number of living donor trans-plants remained rather steady in the

60-70 transplants a year range until1999 when Dr. Amadeo Marcosdeveloped the technique of livingdonor liver transplantation suitable foradult transplantation. In this technique,a much larger portion of the liver isremoved (60 percent) from the livingdonor for use in the patient awaitingtransplantation. In the hands of goodtechnical surgeons the procedure isquite successful. The risks for thedonor are higher than those for thedonor for infants and small children,and there is a higher complication ratein the recipient; however, it cannot bedenied that in the year 2000 almost200 adult living donor transplants wereperformed and the numbersignificantly increased in 2001. Theseare patients that might have never beentransplanted had this technique notbeen developed.

Despite all of these improvements andtechniques we are unable to keep upwith the demand for liver transplant-ation. There are presently 17,000patients on the list awaiting livertransplantation. Despite over 4,800liver transplants being performedannually in the United States we areunable to make a dent in the waitinglist. In fact, for every patient that wetransplant two new patients are placedon the list. Improving organ donationis a major hurdle in the futureadvancement of liver transplantation.

What is coming in the future? Everyyear new drugs are added to the list ofmedications we use for the treatmentof rejection. New techniques are addedto improve the surgery, the outcomesor to decrease complications. Transp-lantation is a constantly growing andimproving field. Investigation intoareas to improve the body’s acceptanceof the new organ without the use ofanti-rejections medications areongoing. Transplantation withoutrejection and without medications isthe goal. The sky is the limit. TC

Liver Transplantation:How Far Has It Come?By Adela T. Casas-Melley, MD

more medical beat

Adela T.Casas-Melley,MD

Rachael Jones was the mother of anew baby girl, Darrica, and an

active nine-year-old boy, Marquis.Her family had much in commonwith most young families, but therewas one major difference in theirroutine. Every Monday, Wednesdayand Friday, after Marquis left forschool, Rachael and little Darricaheaded for a local dialysis unit. WhileRachael dialyzed, Darrica slept in abassinet by the secretary’s desk.

Rachael had kidney failure, caused bya condition called focal necrosis. Shehad been through severe complica-tions with both her pregnancies—complications that taxed her kidneysand threatened the lives of her unbornbabies. Now, her ongoing dialysiswas putting a strain on her and on thechildren. She no longer had the timeor stamina to work. Forced to give upher job at a light bulb factory, she hadto rely on Social Security Disabilitybenefits for support. Rachael had losther old habit of taking life forgranted. Many times she foundherself asking, "Why me?"

When Rachael’s doctor at VanderbiltMedical Center asked her if shewould be interested in having akidney transplant, Rachael knew thatshe was being offered an opportunityfor a better life. She replied, "Yes, Ireally want a transplant!" Rachael hadtwo older sisters and they both cameto Vanderbilt to be tested. "One of mysisters couldn’t donate a kidneybecause she had high blood pressure,"explains Rachael, "and it turned outthat my other sister wasn’t a match."Rachael’s parents were bothdisqualified because of their ownhealth problems. "I was depressedafter they had been ruled out," recallsRachael. "I was really discouraged."

Rachael didn’t think of asking heryounger brother Charlie. She andCharlie had drifted apart and sheseldom saw him. So she wassurprised and moved when one dayhe called her to offer his kidney.

Rachael went with Charlie toVanderbilt to get him tested andwaited nervously for the results. Afew days later, Gaye Kelly, atransplant coordinator at thehospital, called the waitingsiblings with good news. "These are great results," she said. "He’s aperfect match!"

To prepare for surgery, Charlie andRachael went through counseling andhad three days of examinations.Rachael explains, "This actually gaveus a chance to get back in touch. Wehadn’t spent much time together sincewe were kids. Going through this, wereally bonded again." The night beforethe surgery she and Charlie had a bigdinner with the whole family. The dayof the surgery the two of them went tothe hospital together and prayed.Rachael asked Charlie if he was surehe wanted to give her his kidney. Heanswered, "Yes. I’m doing this for youand your life and your kids."

The transplant was a success. Rachaelhad her health back and was free fromthe draining routine of dialysis. Shewas busy with Marquis and Darrica,and involved in church activities. Shewas closer than ever to her brother,Charlie. The only thing she needednow was a job. "My sister was alsolooking for work," she says, "so I toldher that I was going to go with her andstart job hunting and going oninterviews," says Rachael. AlthoughRachael applied to several places, shedidn’t get any calls back. She becamediscouraged again. By this time, shehad been out of work for three years.As she explains, "When you’ve beenout of work for three years, people arescared to try you."

Then one day she got a call from avocational counselor at the VanderbiltTransplant Return-to-Work Program,asking if she needed help finding ajob. "I didn’t know anything about theprogram. I wondered how thecounselor knew I was looking forwork. I decided to go ahead and try

it," she says. Rachael’s goal was tofind an office job, like a secretary or areceptionist. "I’d worked factory jobsbefore, and that just wasn’t happeningfor me," adds Rachael, "but I’d alwaysdreamed of a job where I could dressup—wear dresses and earrings andkeep my hair nice."

Thanks to the help of her vocationalcounselor, Rachael soon found a full-time position as a file clerk in theAdult Primary Care Department ofVanderbilt Medical Center. She tookto her work with excitement. First sheput the file department in order, andthen she took on some of thereceptionist duties. "I love my job!"she says. As a future goal, she isconsidering stepping up to a frontdesk position, registering patients."But as for now," she remarks, "I’mjust really happy where I am."

"Yesterday was the secondanniversary of my transplant," saysRachael, "It just so happened to fallon a Sunday, so we went to church.We had a big family dinner in theevening. We celebrated like it was abirthday party." Summing up, sheadds, "My life is turning out the way Iwanted it. It’s moving slow, but it’scoming. My goal now is to purchase ahome for my kids, so I can havesomething secure for them. I’d like to have my own yard. If I keepworking and keep on striving for it,I’ll get it."

Joanne C. Ball is the programdirector of Vanderbilt UniversityMedical Center’s Return-to-WorkProgram in Nashville, Tennessee.

TC


Rachael Jones with her brother, Charlie,and children, Marquis and Darrica.

On the Road to WellnessBy Joanne C. Ball, MST, CVE, ABVE


The 1990’s saw incredible changesin health insurance for all

Americans. Perhaps more so fortransplant recipients. Most recently, thefederal government extended Medicarecoverage for immunosuppressive drugsfor recipients of organs beyond thethree years previously given to kidneypatients. However, this extension doesnot apply to those whose medicarecoverage is solely based on End-StageRenal Disease (ESRD). While thiswriter certainly prays that the ESRDtransplant community also benefitsfrom the extension (through a changein the law at some point soon) there isno doubt that for thousands of us, the additional coverage is a great relief because of the expense of thecovered medicines and the critical need for them.

While the changes in Medicare and thewidespread agreement of the states topay for organ transplants throughMedicaid programs are tremendousadvances, on the private side thechanges are nothing short of shattering.

In the early 1990’s, many insurancecompanies only routinely coveredkidney transplants. During the last 10years the demand for organs hasgrown, and the wait lists haveexceeded the numbers of donors,because of the gradual acceptance oforgan transplantation as therapeutictreatment for organ failure. Heart andliver transplant survival rates haveapproached those of kidney transplantsand insurance companies nowregularly provide coverage for trans-plants and the ensuing drug regimens.

Of course, many recipients must returnto work. The states and federalgovernment have enacted many lawsthat protect our rights to coverage andin some cases give us new rights. Mostof us know about COBRA (theConsolidated Omnibus Recovery Act), which mandates continuation ofcoverage for persons who becomedisabled from work and who arecovered under group health plans.COBRA was a big step forward when enacted in the 1980’s. It did

little to ensure coverage for personsreturning to the workforce or thosechanging employers who wouldotherwise be entitled to coverage withtheir new employer.

In 1996, President Clinton signed theHealth Insurance Portability andAccountability Act (HIPAA). Alongwith the above mentioned increasedMedicare coverage and acceptance bythe insurance industry of transplants as routine, this act has ensured thatmany thousands of recipients have farless risk of losing coverage due totheir health.

HIPAA limits or eliminates waitingperiods and exclusions for preexistingconditions. Thus, people can leave oneemployer and be covered for allprovisions of a new policy – in mostcases – or return from disability andhave their COBRA or Medicare counttowards eliminating any waitingperiod for coverage. HIPAA alsomandates that states require insurancecompanies issuing group policies tomake available individual policies toterminating employees. Formerlycovered employees are now almostalways guaranteed some kind ofmedical coverage.

Other changes that benefit thetransplant community include stateregulations affecting claims proces-sing, audits of insurance companies,expanding legal rights against HMOsand insurers and the creation of specialstate sponsored plans for child healthcare. At the federal level, there arestrict laws prohibiting employmentand employee benefit plan discrimin-ation against the disabled (AmericansWith Disabilities Act and HIPAA),special rights to require employercoverage of employees’ children,mental health parity, mandatoryminimum coverage for hospital staysfor childbirth (Newborns’ andMothers’ Health Protection Act of1996) and reconstructive surgery formastectomies (1998).

Where do we go from here? Congresswill pass a patient’s bill of rightswithin the next few years. It is

anticipated that we will have the rightto sue health plans in state court forbad decisions. It is likely Medicarewill be extended to cover drugs forESRD transplant recipients not alreadycovered. Insurance companies arepaying and will pay more to cover thecosts of living donors – live donationis now being routinely performed forkidney transplant and is becomingmore common in liver transplant.

Here are some suggested resources forfinding out about your rights andcoverage: Employees should alwaysask for a copy of the entire policy thatcovers them. Do not just rely on planbooklets. Read carefully. Everyoneshould know his or her rights andpotential coverage under Medicare.Contact the Social Security office nearyou. Other government agencies offerinformation and help. Such agenciesinclude Medicaid offices, legal aidsocieties and public advocacy offices.If covered under employer plans youmight also call the U.S. Department ofLabor with problems or questions inaddition to the state insurancedepartment. There are lots of privateand non-profit organizations such asthe National Kidney Foundation(www.kidney.org), American LiverFoundation and American HeartAssociation. If you need an attorney,call your local bar association. Readabout extended Medicare coverage forimmunosuppressive medications atwww.transplantrecipients.org.

Do not assume that you are covered.Always read your policy and talk toyour employer and health careinsurer/HMO. If you have a coveragedispute, policies have procedures thatmust be followed and most statesrequire the companies have in place anappeal procedure. Before going tocourt, you must exhaust your rightsunder the plan. To find detailedinformation on the laws discussed heretry www.findlaw.com, which has linksto government and other sites, stories,articles and more. TC

Health Insurance: Changes Over the Past Ten yearsBy Alexander H. Whiteaker

Since the first heart transplantoperation in December of 1967, wehave seen what was initially amedical curiosity become a relativelycommonplace surgery in a relativelylarge number of transplant centersthroughout the United States and theworld. Unfortunately, transplantationis not a "cure" for severe heartdisease. It does offer, for carefullyselected patients, an improvement inlife span, and for most, a significantimprovement in quality of life.During the 1980’s, we saw a markedimprovement in survival post-hearttransplantation, due largely to theintroduction of new chronicimmunosuppressive drugs (includingcyclosporine). In the 1990’s we saw acontinued improvement in survival, inlarge part due to a lower incidence ofheart rejection as a result of theintroduction of additional newchronic medications to preventcardiac rejection, includingmychophenolate mofetil (CellCept)and sirolimus (rapamycin, Rapamune)and it’s derivative (RAD-SDZ,currently under investigation in hearttransplant patients). In addition, wehave seen the introduction ofdacliximab (Zenapax) andbasiliximab (Simulect), which may beused just before and then for a fewdays to weeks after transplantation tofurther prevent rejection. These drugsseem to allow more patients tosuccessfully be tapered off of long-term steroids, thus lessening themedical complications associatedwith their use, including osteoporosis,diabetes and obesity.

The therapy of acute heart rejectionhas also seen significant advances inthe last decade. We now have newand more powerful agents for thetherapy of rejection including

Thymoglobulin. Acute therapy forsevere rejection has also beenimproved by the more widespread useof techniques, such as plasmapheresisand immunoabsorption, whereantibodies causing rejection areactively removed. Preventivemeasures to reduce the chance ofrecurrent rejection such as photo-pheresis have also gained morewidespread acceptance.

Heart transplantation is often referredto as the "last resort" in the therapy ofsevere, or so-called "end-stage" heartdisease. Part of the reason for thisdescription is the fact that hearttransplantation may only be offered toa small minority of potentialrecipients due to the shortage ofdonor organs throughout the world. Inthis country, the number of hearttransplants per year peaked atapproximately 2,300 in the early1990’s, and remains at about 2,100 –2,200 per year. This is despite arelaxation in the criteria of acceptanceof a donor to include older donorhearts. It is estimated that we couldmore than double the number of hearttransplants if all potential donorfamilies gave permission for heartdonation. Unfortunately, the numberof patients with advanced heartdisease is rising significantly, as theoccurrence of heart disease increaseswith age, and our population is aging.

Fortunately, the therapy of advancedheart failure has improvedsignificantly over the last 10 years.Indeed, many of the patients whowere routinely transplanted early inthe 1990’s are currently treated withmedications, devices to treat lifethreatening arrhythmias (implanteddefibrillators) and surgical therapies.These measures result in improved

quality of life and life expectancyrivaling that of the transplantrecipient for many of these patients.The more widespread use ofmedications such as ACE inhibitors(captopril, enalapril, lisinopril,ramipril, and others) and betablockers [carvedilol (Coreg),metoprolol-XL(Toprol-XL)], havebeen shown to not only improve heartfunction, but to improve survival.More enlightened transplant centerscombine an advanced heart failuretreatment program, including anactive transplant program, with anemphasis on transplanting only thosepatients who really needtransplantation. This practiceincludes placing previously listedpatients on an inactive status if theirheart disease improves to the pointthat the risk of transplantation ishigher than the risk of continuedmedical therapy. Unfortunately, dueto the shortage of donor organs, andthe desire to do an adequate numberof transplantations, some programs"pre-list" patients for hearttransplantation because of thepossibility of a long wait for anorgan, and then may transplant apatient who is less sick too early. Thispractice actually lengthens thewaiting time for donor hearts, andmay shorten the overall survival of anindividual patient who is transplantedtoo soon.

Hope for the patient with advancedheart failure has also been improvedby the use of ventricular assistdevices (VADs) and, more recently,the total replacement heart(ABIOMED Heart). VAD technologyis moving from intermediate survivaltechnology utilized as a bride to


Continued (on page 14)

Heart Transplantation as Therapy for Severe Heart Disease: Changes Over the Last DecadeBy Robert C. Bourge, MD, and Barry K. Rayburn, MD

more medical beat❥


Of all the issues surrounding organand tissue donation and

transplantation in the US, perhaps themost confounding is the question ofdonor registries. Twenty-eight statesdon't even have one, and those that dohave no national funding (some haveno funding at all), little uniformity, nolinkage and no common accepteddefinition of consent versus intent.Most important, it is not knownwhether registries even make anydifference at increasing donation.

Participants invited by the USDepartment of Health and HumanServices (HHS) to a Donor RegistryForum Nov. 29-30 spent two intensedays bandying about such nebulousquestions and developingrecommendations for HHS toconsider. When the dust cleared,attendees had settled on the following"Catch 22" decision—establishmentof a national donor registry is off thetable at this time, but the 28 stateswithout a registry should not proceedto develop one until nationalminimum guidelines are established.And, in a final fit of decision making,the group recommended that anational study be conducted toaddress all the issues raised aboveplus a bucketful of others.

"We want you to discuss registrieswith each other, don't get mad at eachother, and come up with a set ofrecommendations," HHS SecretaryTommy Thompson told the more than100 participants representing organprocurement organizations (OPOs),state governments and a few tissueand eye procurement organizations."We will follow your lead and comeback to you. We want to be yourpartners in working this out."

At the end of the two days,participants had clearly raised morequestions than they answered, i.e.,they adamantly rejected any thoughtof establishing a national donorregistry (we want your money but notyour divine intervention)—althoughwhat to do with the 28 states withouta registry remains unanswered—andreaffirmed the reality that to date thedata shows that the establishment ofregistries has had little or no impacton increasing organ donation.

"What difference do registries make?This is a puzzle for us," RussellHereford, HHS inspector general, toldparticipants. "Most say it helps themdo their work, partner better withhospitals, but it is not clear ifregistries work or if they make adifference." Hereford's commentswere important because his office iscurrently putting the finishing toucheson a report on registries due out in thespring of 2002.

Richard Luskin, executive director ofthe New England Organ Bank locatedin one of the 30 states without aregistry, Massachusetts, raised thequestion that was central to the debate over registries when he asked,"Do they actually make a differenceor do we get people we would havegotten anyway?"

There are currently four different billsin Congress containing differentprovisions for the establishment ofdonor registries. None is expected topass in its current form, but they doprovide a framework for futurelegislation once HHS has determinedwhat action, if any, to take.

The provisions range from The MotorDonor Act (S.788 and H. R. 2645)

introduced by Sen. Charles Schumer(D-NY) and Rep. Leonard Boswell(D-IA), which calls for the establish-ment of a national organ and tissuedonor registry to the Organ DonorEnhancement Act (H.R. 955)introduced by Rep. Jay Inslee (D-WA), which calls for establishment ofa nationwide centralized living donorregistry for tracking living donorsannually, but does not address devel-oping an organ/tissue donor registry.

There was general agreement thatHHS should develop modellegislation utilizing the best of thefour bills and that each of the four islacking in some fundamental way.

After much debate, the participantsarrived at a set of recommendationsto be forwarded to SecretaryThompson sometime early next year. While the language of some ofthe recommendations is sure tochange, here are the recommendationsin general:

The government should establishminimum guidelines that must beincluded in state registries—statesconsidering establishing a registrywould have to meet the guidelines tobe eligible for federal funding.

The issue of donor intent versusconsent must be clarified. TheSecretary should request the Instituteof Medicine (IOM) to conduct a study on this issue and several others including what a signed donorcard means.

State autonomy to establish aregistry must be respected and allstates should be encouraged todevelop a registry.

No national registry should be

Continued (on next page)

Transplant News DigestTransplant News Digest

Jim Warren

From the editors of Transplant News

State of Donor Registries in U.S. Confused at Best With Little Evidence of Positive Impact Forum Finds

By Jim Warren, editor and publisher


considered at this time. It is importantthe Secretary clarify that thegovernment is not talking aboutestablishing a national registry.

The national role must be defined.Congress and HHS must decide whatthe role should be.

A national report on organdonation in states that have registriesand those that don't should bepublished annually.

Congress must provide initiativesto establish registries includingfunding.

A process for evaluation andaccountability must be developed.

There was wide agreement that everycitizen in the US should be providedthe opportunity to join a donorregistry. The question of how to givethat opportunity to residents in the 28states without a registry at this timeremains to be answered.

Perhaps equally as important was astatement by Stacy Schmidt, Chair ofthe Association of Organ ProcurementOrganization's Registry Task Force,who told the participants at thebeginning of the meeting that a donorregistry is designed as a place to go tobecome a donor, not to decide if theywant to donate.

AMA delegates narrowly defeat bid tostudy financial incentives for organdonationDelegates attending the AmericanMedical Association's (AMA) wintermeetings in San Francisco voted totable a plan to study what effectfinancial incentives would have onorgan donation.

Following a lengthy debate over theCouncil on Ethical and JudicialAffairs' recommendation that theAMA support pilot studies todetermine if covering funeralexpenses or giving tax benefitsimpacted donor rates, a slim majorityof the 538 delegates voted to table thematter for at least six months.

Explaining the recommendationFrank Riddick, Jr., MD, councilchairman, said, "We have a

AST launches program to removefinancial disincentives for live donorsThe American Society of Transplan-tation (AST) has launched anationwide effort to get privatecompanies to change employeepolicies to remove any financialdisincentives for employees seekingto become a live organ donor.

AST is asking its members toparticipate in recruiting companiesand organizations in their states todevelop organ donation leave policiessimilar to those already adopted bythe Federal Government, many statelegislatures and private companiesand institutions.

"As you may be aware, the FederalGovernment has changed its'employee leave' laws to provide itsworkforce with a more adequateamount of time to recuperate from theorgan donation process," AST said ina letter to members signed byLaurence Turka, MD, president, andWilliam Harmon, MD, president-elect. "In addition, many Stategovernments have also acted toamend their leave policies to removeany financial disincentives foremployees seeking to serve as anorgan donor."

The letter explained that the OrganDonor Leave Act signed by PresidentClinton in September 1999 extendedthe amount of paid leave for thepurpose of being a live donor (kidney,live, lung) - to up to 30 days. Turkaand Harmon also noted that morethan 20 state legislatures are movingtoward passing such laws, and listedstates that already have such laws,including: Colorado, Delaware,Florida, Maryland, Missouri, NewYork, Virginia and Wisconsin.

The AST's "sample leave policy"included in the letter to membersincludes:

"Eligibility - paid organ donationleave is available to regular full-timeand regularly part-time employeesonly; part-time and temporaryemployees, and employees on


nationwide crisis and altruism doesn'tseem to be hacking it right now."

Riddick's council urged the AMA toinitiate a scientific trial on what effectoffering financial incentives mighthave on increasing/or decreasingorgan donation. The council's reportnoted, "There seems to be nocompelling reason why viable solidorgans should be treated differentlyfrom less complex tissues [like bloodand reproductive materials] on moralgrounds. Moreover, donation itselfimplies a property right in organs."

Buoyed by the slim margin of defeat,proponents of the pilot studies saythey will raise the issue again at theAMA's June 2002 meeting in Chicago.

Congress passes HHS funding billwith $5 million increase for donorinitiativeWith what many observers calledsurprising ease, the US Congresspassed the 2002 Labor, HHS,Education Appropriations bill onDecember 20th. The $116.3 billionappropriation includes a $5 millionincrease in support for theDepartment of Health and HumanServices national organ donorinitiative.

In a statement praising the agreementHHS Secretary Tommy Thompsonspecifically pointed out the fundingfor the donor initiative. "Theagreement [would] increase support toorgan transplant programs in theHealth Resources and ServicesAdministration by $5 million, provid-ing greater impetus behind theSecretarial 'Donate Life' organ dona-tion initiative, which was launched inApril 2001," Thompson said.

The agreement also provides $23.3billion (14.7 percent increase over2001) in spending for the NationalInstitutes of Health (NIH), $4.3 billionfor the Centers for Disease Controland Prevention (CDC), and $229million for the Agency for HealthcareResearch and Quality (AHRQ).


approved unpaid leave of absence arenot eligible.

Amount of leave - eligibleemployees may be excused for oneweek for bone marrow donation.Solid organ live donors are eligiblefor X amount of leave following thedonation (30 days recommended).

Payment for leave - each day ofapproved leave is paid at theemployee's current regular straighttime rate of pay; plus any regularshift premiums times the number ofnon-overtime hours per week that theemployee normally works divided byfive.

Overtime - organ donation is notconsidered hours worked for thepurposes of calculating overtime. It isconsidered hours worked towardcalculating earned time accrual."

AIDS activist, playwright LarryKramer gets liver transplantAfter a seven month wait on thetransplant waiting list, renownedplaywright, novelist and AIDS activistLarry Kramer received a livertransplant at the University ofPittsburgh Medical Center (UPMC) onDecember 21. Kramer was releasedfrom UPMC on January 2 but willremain in Pittsburgh for several weeksso physicians can monitor hiscondition until he is well enough toreturn to his home in New York.

Kramer, 66, who needed the transplantbecause of end-stage liver failurecaused by hepatitis B, was the tenthpatient with HIV to be transplanted atUPMC since 1997. (Transplant News,September 18, 2001)

"Our experience with liver trans-plantation for hepatitis B has beenexcellent and the use of new anti-hepatitis B medications shouldprevent the redevelopment ofhepatitis B in Mr. Kramer," said JohnFung, MD, chief of the UPMCdivision of transplantation who ledthe surgical team.

Kramer's screenplay for the 1969 filmWomen in Love was nominated for anAcademy Award. He also wrote theplays "The Normal Heart" and "The

one copy of the GGTA1 geneknocked out. The animals were bornon Christmas Day at PPL’s US branchin Blacksburg, VA.

Pigs have garnered the most attentionas potential sources of organs forhumans because they are biologicallysimilar to humans but not as similaras monkeys or apes, which arereservoirs of human disease.

Despite this advance, however, signif-icant obstacles remain before pigorgans are ready for human testing.

First, researchers must breed animalsthat lack both copies of the GGTA1gene. The Immerge BioTherapeuticsgroup said it hopes to have “double-knockout” pigs born within the nextyear or so. The researchers plan toaccomplish this by further manipulat-ing the genes inside cells or bymating some of the newborn single-knockout animals, which can give riseto double-knockout offspring. Organsfrom animals completely devoid ofthe culprit gene then will be trans-planted into non-human primates tosee how long they survive andidentify mechanisms of the primateimmune system that interfere with thetransplants’ longevity.

"This is a major step forward,although these pigs have had only onepair of genes knocked out whichmeans they still produce Gal," DavidCooper, MD, former president of theInternational XenotransplantationSociety, told Transplant News. "We'regoing to have to wait for the othergene to be knocked out before wehave a pig that doesn't express Galwhich can be either by a secondcloning procedure using a cell fromthe present pigs, or by breeding.Repeat cloning would be quicker butthere are technical difficulties whilebreeding would take much longer."

"In any case, it will be at least 12 to18 months before we have a pig thatcould be used as a donor for testing ina nonhuman primate model," Cooper


Destiny of Me," as well as books onAIDS and gay activism.

According to the United Network forOrgan Sharing (UNOS), since 198833 liver transplants have beenperformed in HIV-positive patients inthe US. Of the 4,954 liver transplantsperformed in the US in 2000, 11 wereHIV-positive patients.

Cloned pigs with rejection geneeliminated raises hopes forbreakthrough in xenotransplantationIn a significant step toward enablinganimal-to-human transplantationwithout organ rejection, scientists attwo rival biotechnology companiesannounced last week that they hadcloned pigs that are missing a genethat triggers rejection by the humanimmune system.

Immune system rejection has been ahuge barrier to xenotransplantation.The theory behind these recentcloning experiments was to create asupply of identical pigs lacking theproblematic gene. Until now,scientists have been able to add genesbut not remove them, explainedRandall Prather, PhD, a University ofMissouri reproductive biologist wholed a research team from ImmergeBioTherapeutics in Charlestown, MA.

On January 3, researchers at theUniversity of Missouri at Columbia,in collaboration with ImmergeBioTherapeutics, a joint venturebetween Novartis and BioTransplantInc., reported in the journal Sciencethat they had successfully cloned fourminiature pigs lacking a copy of the1,3-galactosyltransferase (GGTA1)gene. This gene produces a sugar thatis immediately recognized as foreignby the human immune system. Itspresence in every cell of a pig’s bodyhas precluded the use of swine organsin humans, as any graft would bequickly rejected. The piglets, allfemale, were born in September andOctober and appear healthy.

A day earlier, PPL Therapeutics, theScottish company that created Dolly,the world’s first cloned mammal, saidit had cloned five pigs that also had


added. "And it would be at least ayear after that before we couldconsider a clinical trial."

Public advisory panel recommendsban on xenotransplant human trialsin CanadaAfter nearly two years of deliberation,a public advisory group is recom-mending that Canada not allowxenotransplantation involving humansat this time until many "criticalissues" are resolved. The major issue,according to the group, is the healthrisk an individual would be taking inreceiving an animal organ.

"When considering whether toproceed with xenotransplantation,Canadians consistently raised issuesaround health risks, strategies toaddress the organ shortage, andlegislation and regulations," observedthe Canadian Public HealthAssociation's Public Advisory Groupon Xenotransplantation, in thereport's executive summary.

Health risk "was generally expressedas concern about the risk of zoonoticdisease from infection by known andunknown viruses, and the fear thatthis could lead to a large-scaleepidemic," the report said.

More than 62 percent of respondentsto a variety of surveys said they feltthe risks of xenotransplantationoutweigh the benefits, the summarynoted, adding that women were"significantly more likely than men"to feel that way.

Canadians who supported goingforward with xenotransplantationsaid "stringent and transparent"legislation and regulation must be inplace before human trials begin.

"Strict regulation of researchpractices (both human and animal),public education and designatedcenters of expertise are measures thatcould be taken that would mostreassure Canadians aboutxenotransplantation," the summary

kidney transplant to an inmate whoserequest initially had been denied.

The United Network for OrganSharing (UNOS), the organizationthat maintains the nation's waitinglists, says excluding an inmate fromreceiving a transplant is not"ethically legitimate."

"Unless a person's status connotessome exclusionary medical criteriasuch as their environment isn'tconducive to appropriate aftercareprohibited by law from includingsocial criteria in organ allocationpolicy," Anne Paschke, a mediaspokesperson told Transplant News."The National Organ Transplant Actspecifies that the Organ Procurementand Transplantation Networkestablish 'medical criteria' for organallocation. It's been UNOS' positionthat 'social criteria' per se beexcluded from medical criteria andtherefore are not permitted inconsideration of organ allocation."

Initial reactions to the transplant weremixed. "You have to wonder if a law-abiding taxpaying citizen drew onelast breath while Jailhouse Joe wasgetting a second wind," Steve Lopez,a columnist for the Los AngelesTimes wrote.

However, Dr. LawrenceSchneiderman, a medical professor atthe University of California, SanDiego, supported the transplant. "It'sreasonable to think the benefit we aregiving him will be experienced byhim with plenty of life left," he toldthe Associated Press. "Medically, wehave no reason to deny him. Socially,he violated society, but not soseverely that he gives up his right toexperience medical care."

Schneiderman emphasized that"doctors don't have the right to makesocial decisions. If it’s a limitedresource, our choice should be whowill it help the most." TC

noted. In addition, a legal frameworkincluding research protocols, anaccountability structure, multidiscip-linary ethics committees, a'watchdog' responsible for goodclinical practices and a procedure forinformed consent must be in place.

California inmate receives hearttransplant, igniting debate over whoshould receive scarce organsA 31-year-old California prisoninmate serving 14 years for robberyis thought to be the first person toreceive a heart transplant while in astate prison. The inmate, whosename is being withheld for reasonsof medical confidentiality, received aheart at Stanford Medical Center onJanuary 3. State prison officials saidthe inmate suffered from a viral heartcondition, which became critical,necessitating the transplant.

The prisoner was transferred to theStanford Medical Center fromCalifornia's prison system medicalinstitute in Vacaville. He received theheart from an unknown donor andhas been returned to Vacaville.

The transplant, estimated by officialsto cost in excess of $1million withfollow-up care, sparked a debate over whether there are limits to thetype of care that should be given toailing prisoners.

Russ Heimerich, a spokesperson forthe California Department ofCorrections, defended the transplant,saying the department has lostseveral lawsuits over inmate care."We don't have a policy per se,"Heimerich said. "We have arequirement, based in law and inlosing many, many lawsuits, toprovide necessary care to inmates."

Heimerich cited a 1976 US SupremeCourt ruling declaring it "cruel andunusual punishment" to withholdnecessary medical care from inmatesand a 1995 federal court decisionordering prison officials to give a


keeping fitkeeping fitA Cardiovascular WorkoutBy Vanessa A. Underwood, ACSM, AFAA, ACE, ACSM, CSCS

Aerobic or cardiovascular exerciseuses your large muscle groups in

rhythmic motions for increasingperiods of time. Walking, cycling,swimming, water and low impactaerobics, marching, dancing,stepping, cross-country skiing androwing all fit under this umbrella. Theintensity should be maintained for atleast 10 to 15 minutes, without unduefatigue. The best aerobic exercisesshould maintain intensity at aconstant level. This is especially truefor individuals who are just beginningan exercise program, or for those whomay be experiencing symptoms ofcardiovascular disease. To maximizesafety, you should adequately warmup prior to aerobic exercise, and thencool down at the end of the session.There are three important charac-teristics of exercise to be considered.

The frequency, duration andintensity are all interrelated and mustbe monitored and adjusted in order tomaximize health benefits.

Frequency

Three to five times per week is agood start. Exercising one or twotimes may maintain fitness, but doesnot provide enough stimuli to achievesignificant gains. On the other hand,performing the same repetitive modeof training can cause over-useinjuries. Cross training (doingdifferent activities) has been found to be the most effective with fewer injuries.

Duration

To maximize the benefits, try toprogress to 30 minutes ofcontinuous activity. When you firstbegin a routine be realistic and donot overdo it. Begin with fiveminutes, if this is all you cantolerate. Each session or everyweek, try to add a minute or two toyour session. Increase your time,according to your tolerance. Don'tpush yourself too hard. Exerciseshould become a life long habit, sogo slow. It’s about participation, not perfection.

If your goal is weight manage-ment, aim for longer than 30 minute sessions. The longer youexercise, the more calories youburn. However, keep in mind that you should only do what youcan tolerate.

Intensity

Moderate levels of exertion areappropriate and will do the trick.Begin with a warm-up and end with acool down. The level of exertionshould be one at which you are:

Breathing some what heavy, butnot out of breath. Feeling warm and breaking asweat. The fitter you become themore you sweat. Pushing yourself a little, slightlybeyond what is comfortable.Stopping the exercise and havingyour heart rate and pulse comedown within 30 to 60 seconds ofending your session.

Exercise Session

Warm up for three to five minutes and include low level exercises likemarching, dancing, big rhythmicmovements and knee and arm raises.It is important to increase your body temperature before stretchingyour muscles.

Stretch to your first point oftension and hold it for 15 to 30seconds. A conditioning period shouldbegin slowly and work up to 30to 60 minutes of exercise. Try some moderate or semi-difficult levels of exertion.Cool down for about two to threeminutes. Try some easy, light or low levelsof exercise.

In health & happiness,Vanessa A. Underwood

TCDonald Arthur, heart recipient fromNew York City, carries the OlympicTorch.


medical beat

transplantation, to more long term "destination"therapy meant to someday supplement transplant-ation as a therapy for heart failure not responsive tointense management.

The 1990’s saw great improvements in the advance-ment of medical and surgical modalities to improvethe quality of life and survival of patients with end-stage heart disease, but advances under investigationhave the potential to improve things even further.Hopefully, measures to improve public awareness ofthe need for organ donation, and possibly the develop-ment of genetically engineered animals that will allowxenotransplantation (transplantation from an animalinto a human) will allow more people to benefit fromthe life-saving therapy of heart transplantation.

Dr. Bourge and Dr. Rayburn are both transplantcardiologists. Dr. Bourge is currently chief ofcardiology and Dr. Rayburn is medical director ofthe heart transplant program at the University ofAlabama at Birmingham, one of the nation’s oldestheart programs.

TC

Continued (from page 8)Do you think that I could ever be

A Captain sailing on the seaWith the stars in the heavens guiding me?

Do you think?

Do you think that maybe some day soonI could fly straight to the moon?

Could I be there and back by noon,Do you think?

Do you think that one day I could goTo the top of the alps all covered with snowAnd be back before anyone would know?

Do you think?

Do you think that one day I could flyA plane far up high in the sky

Going up, up, up until I’m really high?Do you think?

Do you think that one day not so farI could maybe be a football star?

I’d score the points to win the gameAnd everyone would know my name.

Do you think?

Do you think that maybe in the SpringWhen I’m not doing anything

I’d be starring in the center ringWhile the audience breathlessly

Watched me swing?Do you think?

Do you think that one day I am meant To maybe be the President?

If my mom would give me her consent.Do you think?

Do you think that if I work and planI could be a fireman?

I’d be right there to lend a hand.Do you think?

Do you think that if you’re ever ill andNeed someone to give you pills

I’d be the one who sends the bills?Do you think?

I think that I cold probably doAnything I really wanted to.

I think I can and so could you.Do you think?

Carolyn M. Ellis is a native New Orleanian and has beenmother and grandmother to many children. She is a goodfriend of kidney patient, Charlie Anderson, who findsstrength in her poems.

TC

Do You Think?By Carolyn M. Ellis

✃

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1/2 cup whole milk4 teaspoons sugar1/4 cup nonfat dry milk1 cup ice cream

500 Calories, 19 gm proteincan add additional flavorings orfruit

Recipe From Our Dietitian

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As organ transplant waiting listsgrow, the length of time that

patients wait increases. This isparticularly true for those patientswaiting for donated kidneys.Currently, there are over 50,000people waiting for a kidney transplantin the United States. In major urbanareas, it is not uncommon forsomeone to wait three or more yearsfor an available kidney from a brain-dead organ donor. Consequently,transplant surgeons routinely recoverorgans from living donors whetherrelated or unrelated to the recipient.Friends, co-workers and others havecome forward to give a kidney toanother. It is also now possible for aliving donor to give a portion of hisor her liver or pancreas to helpanother. A whole lung or even a lobeof a lung can be recovered from aliving person and given to another.Because of risks to the donor, living"extra-renal donors," are not ascommon as live kidney donors.Typically, the donor is a parent givingto his or her child in a life-savingsituation. As the shortage of donatedcadaver organs has worsened,transplant surgeons and critical caremedicine specialists are returning toan historical source of organs forsome relief. A procedure known asnon-heart beating donation is againbeing practiced.

Prior to 1968, all organ donors wereconsidered to be non-heart beatingorgan donors. That year, the Harvardcriteria for brain death determinationwere developed and promulgated. Bythe late 1970’s, the criteria had gainedwide acceptance among the medicalestablishment and state lawmakers.Nearly every state now has a braindeath law on the books. Some ofthese laws model the UniformDetermination of Death Actdeveloped during the early 1980’s.Adoption of brain death laws meantthat (at that time) kidney donors did

not have to be declared dead basedon cardiac criteria before the organscould be removed. Organ donationcould then occur while the patientwas maintained on a ventilator withan intact heartbeat until just secondsbefore the organs were removed.

Today, non-heart beating organdonors are those patients who can notbe declared legally brain dead.Typically, these patients havesuffered severe brain injuries yet theyretain some minimal lower brainfunction. This is usually manifestedby a weak breathing effort that mustbe supplemented by a ventilator toprevent cardiac arrest. If the family ofsuch a patient has made the decisionto terminate life-support and alsowishes their loved one to be an organdonor, it may be possible.Determining factors include thestrength of the patient’s heartbeat andbreathing effort. If in the opinion ofattending critical care medicinespecialists, the patient will experiencea cardiac arrest within sixty minutesof withdrawal of ventilatory support,he or she may be a candidate for non-heart beating organ donation.

The scenario for non-heart beatingorgan donation is as follows: with thefamily’s informed consent, the patientis taken to an operating room andprepped for surgery. With transplantsurgeons on "stand-by" in a nearbyarea, the patient is removed from theventilator. Once cardiac arrest occurs,the patient is declared "dead" by hisor her attending physician. Oncedeath is declared, the transplant teammoves to the table and the organrecovery begins and proceeds as itwould for a traditional brain-deadorgan donor.

With swift surgical action and experttechnique, it is possible to recoverviable kidneys and livers fortransplantation from these patients.For the family grieving the loss of aloved one, this form of organdonation can bring some comfort. Formore information about this form oforgan donation or to receive samplehospital policies on this procedure,contact Iowa Donor Network at 1-800-831-4131. TC

Non-Heart Beating Organ Donors: Resurgence in Practice

By Suzanne Lane Conrad, RN, MS, CPTC

When our youngest child was killedin a tragic car accident, I wasn’t sureI could go on without him. Truthfully,I don’t know that I really wanted togo on living. Organ donation alloweda part of our precious child tocontinue to live and believe me, Ineeded that for a long, long time.

I never really had the need that somany donor families have, to meetthe recipient of Kyle's organs, but inColombus, Ohio, at the 1998 games, Ihad the chance to see a young mancompete at table tennis. I have no

idea who he was but after watchingfor five minutes, he had become "myrecipient" and I cheered as loudly asanyone when he scored a point. Whydidn’t it matter that he wasn’t actuallyKyle’s recipient? He became Kyle’srecipient because he was alive andplaying table tennis—becausesomewhere, someone like me, gavehim a second chance of life.

Vicki Crosier is the Immediate PastChair National Donor FamilyCouncil and a donor mom.

TC

Suzanne LaneConrad, RN,MS, CPTC

Kyle Crosier

Donor family corner


The History of Immunosuppressive Drug TherapyBy Erin M. Bosak and Larry DeCaria

During the last several decades,advancements in the field of

immunosuppressive pharmacologyhave been made that havesignificantly improved the clinicalsuccess we see in transplantrecipients today. Drugs have beendeveloped over the years that "turndown" the body’s own immunesystem in more specific ways andwith fewer side effects. As we lookto the future for the development ofnewer and better immunosup-pression, it is important to examinethe past and how these importantdiscoveries have had an impact ontransplant clinicians and patients.

In the early 20th century, scientistsdid not know much about theimmune system and the manner inwhich it is used to defend againstinfectious organisms or recognizeforeign tissue. Because of this, manytransplants rejected and failed in thisearlier period. In 1900, the firstmajor breakthrough in immunologytook place. Scientists found that therewere different types of blood andthey had to be matched in order to becompatible with one another. Thisled to fewer adverse reactions inpatients receiving blood products.The next relevant finding occurred in1916 when scientists discovered howthe genetic makeup of an individualaffected transplant rejection andsurvival. In 1944, the immuno-biology of acute rejection wasrecognized by clinicians. This was ahuge discovery that allowedinvestigators to believe that organtransplantation would be possible. In1954 the first successful kidneytransplant took place with theBerrick twins at the Peter BentBrigham Hospital in Boston,Massachusetts. It was during thistime period in the 1950’s that drugtherapy became an integral part ofthe prevention of organ rejection.

The first group of drugs used forimmunosuppression were the

corticosteroids. These drugs mimic ahormone which is already producedin the body called cortisol. From thefirst coticosteroid to today’sprednisone, this class of drugs blocksthe early steps in the inflammatorycascade that are responsible for organrecognition by the body and alsorejection of a transplanted organ.They are a very effective group ofdrugs but they are not without sideeffects. Several adverse effectsoccur with corticosteroids. Theseside effects can include increasedblood sugar, indigestion, problemswith bone mass, increasedcholesterol levels, increased appetiteand changes in body fat. Despite allof these problematic side effects, thecorticosteroids remain a mainstay inimmunosuppression treatment.

The next big advance in drug therapyoccurred when a drug entitledazathioprine (Imuran®) came on themarket in the year 1962. This drugwas unique in that it acts on cells ofthe immune system (B and Tlymphocytes), the cells ultimatelyresponsible for rejection. The drughas fewer side effects than thecorticosteroids with the main onesbeing nausea, vomiting, diarrhea andlowered blood counts. With thecombination of azathioprine andcorticosteroids, more transplantswere able to be performed. The firstliver transplant took place in 1964and the first heart transplant in 1967.Many years elapsed before any otherbreakthrough discoveries occurred.

In 1978, a drug was approved for usethat is considered by many to be thecornerstone of immunosuppresion.This drug is known as cyclosporine(Sandimmune®, Neoral®,Gengraf®,SangCyA®). Cyclosporine was firstisolated from a soil fungus in theearly 1970’s. Researchers concludedfrom studies that the drug had theability to selectively inhibit thecellular immune rejection response.This drug proved to be the first one

to substantially prevent or delay therejection process in the transplantrecipient. Despite its clinicalsuperiority, the drug is not withoutside effects. Side effects can includetremors, excessive hair and gumgrowth, high blood pressure,increased cholesterol and kidneytoxicity (especially in large doses).Another problem with cyclosporineis that the original formulation(Sandimmune®) was erraticallyabsorbed into the blood stream whichresulted in varying blood levels andclinical response. Because of this,blood must be drawn in order toprovide consistent blood levels of thedrug and make proper dosageadjustments. This drug also hasnumerous drug interactions. A newformulation of cyclosporine wascreated in 1995 entitled Neoral®.This formulation improved theproblems with inconsistentabsorption seen with Sandimmune®

which made it more effective than its predecessor. Cyclosporine is still frequently used in manytransplant centers in combinationwith other drugs.

Catalyzed by the success ofcyclosporine, researchers werestriving to find new and better waysto enhance the immunosuppressionof drugs in order to decreaserejection and also to reduce if noteliminate the adverse effects fromimmunosuppression therapy. In1985, monoclonal antibodies wereintroduced to the clinical world.These antibodies were bio-engineered. A drug entitledmuromonab CD3 (Orthoclone OKT-3®) was developed to be used for theprevention and treatment of acuterejection. It is successful inreversing rejection in many patients.Side effects are usually the mostsevere for the first few doses that aregiven in the hospital. Most of these

Continued (on page19)


Ask any woman and she will tellyou that there is a physical part

of her body that she doesn’tparticularly like: it could be her nose,her chin, her hair, her weight and thelist goes on and on. Kidney transplantrecipients are no exception.

My understanding came many yearsago, when I met "Amber." She wasthe beauty queen who lived next door."Amber" won several beauty pageantsand was even a runner up in the Ms.America pageant. I, on the other hand,did not have the long legs or society’sversion of the "perfect body."

Kidney disease stunted my growth.(I’m 4’10”). I was on dialysis for 12years having had three kidneytransplants. I understand the rollercoaster ride of fluctuating weight.After a transplant, the medication cancause uncontrolled hunger and makesit difficult to maintain a set bodyweight. At times my closet had fourdifferent sizes in it.

Prednisone can make your face puffyand leave a little pouch of fluid at thetop of your back. This leads toconstant changes in appearance thatmay be difficult to accept. Not tomention the number of scars my bodyhas. I have had 34 surgeries to date.

Amber and I were an unlikely pair,but we did have one thing incommon. We both focused too muchattention on our bodies. Amber oftencriticized the way her stomach andthighs looked. She also refused foodand exercised continuously -- all in aneffort to obtain the "perfect body." Ifound it hard to believe that thisbeauty queen couldn’t see herself asothers did – absolutely gorgeous.

It was during my friendship withAmber that I learned a very valuablelesson. I could not allow myappearance to control the way I feltabout myself. I realized that physicalbeauty was not the answer to

happiness and I began searching forthe positive inner traits that Ipossessed. I soon discovered that Ihad more to offer than I ever couldhave imagined. People see us how wesee ourselves.

One of the greatest challenges ofliving happily with kidney disease isaccepting your changing body—especially since the changes often arenot of the welcome variety.

Tips to rid yourself of the BodyImage Blues:

Stop The Negative Self-TalkDo not say anything to yourself thatyou would not tell your best friend.

Put On Makeup A little makeup, especially blush, cando wonders. Learn how to applymakeup so it accentuates your bestqualities. I do not have cheekbonesuntil I apply makeup!

See An EstheticianSometimes transplant medication cancause unwanted hair growth or acne.An esthetician can assist you on thebest way to deal with these problemareas. If it is serious ask for a referralto a dermatologist.

Get DressedCombat the temptation to get downand stay there, I made it a habit todress up occasionally or at least wearsomething besides my robe, sweats orother "icky" clothes.

Honor Your Scars Every scar has a story, and for peoplewith kidney disease, oftentimes thestory is about how the procedure, thatleft the scar, saved your life.

Exercise and Eat RightProper nutrition and exercise alwaysmakes you feel better. Figure out whatmotivates you and do it.

Get InvolvedDo things that you enjoy and discoveryour strong points and talents.

Help OthersVolunteering is a special gift we cangive ourselves, especially when weare feeling down. There is no betterway to feel better about yourself.

Since I stopped beating myself up forwhat I don’t look like, my life hastaken on new meaning. Today at age35, I believe that I am appreciated forwho I truly am, and not for what Ilook like.

I have had my kidney transplant forover 12 years. I have been happilymarried to Dean, a wonderful man,for five years and he loves mecompletely (scars included). I teasehim at times stating, "Will you stilllove me when I am skinny?"

I still take steroids, but I am nowconvinced they are the secret toyouth. (The puffiness they cause takesall the wrinkles out of your face!)

Love yourself unconditionally. We arevaluable as individuals, and not justfor our appearance. This is a crucialstep to living a fulfilling life.

Lori Hartwell has lived with kidneydisease for over 30 years. Her booktitled Chronically Happy – JoyfulLiving In Spite of an Illness will beavailable in the summer 2002. TC

The Body Image Blues: What is a Girl to Do?By Lori Hartwell

Lori Hartwell

Michael has had fewcomplications since his

transplant in November of 1999, andis now a “healthy” eight-year-old withan adult-sized perspective onappreciating life. The most disturbingstretch of road for us has been thetransition from chronic illness togradually returned stamina as itrelates to school. Seventy percent ofadults are considered healthy enoughto return to work, but 50 percent donot. Children, whose job is education,have no choice but to return to school,regardless of the physical challengesof their condition.

Many physicians encourage patientsto return to school six weeks post-transplant. The rationale is notacademically driven. They viewschool as the appropriate societalplacement for children. They see kidsthrive when they’re off the couch athome and integrated again with peers.

Educators sometimes view the returnto school as one-dimensional,focusing on missed academics. Aphysician understands that this placesunrealistic expectations on an alreadychallenged child, but becauseregaining physical health is of utmostimportance, they’ll still refer the childback to school. In Michael’s case, ourpediatric nephrologist was open toinitiate communication with theschool to help develop achievablegoals. This action on the part of thedoctor is the single most effectiveway to support your child as he or shebegins to face the many physical,emotional, social and academicchallenges upon a return to schoolafter transplant.

Do not hesitate to be politely assertivein making recommendations to yourchild’s teacher. There are many smallmodifications he or she can make tospiral your child upward towardsuccess. Begin to build a binder,including your child’s medical


Returning to School Post-transplant: A Parent and Child JourneyBy Karen DeVries

information and articles such as thisone, to document the needed support.You may want to ask your doctor torequest the special educationclassification of POHI (Physically orOtherwise Health Impaired). Anapproximate three-year window under

the POHI label requires that yourchild’s school make the uniquecompensations necessary. Forexample, a non-academic hurdle thatultimately affected academicperformance for Michael was fatigue.Walking to and from the bus stoprequired too much physical endurance.The POHI label insured that the buswould pick him up and drop him offcloser to our home. (Please note thatin your state the special educationclassification may go by another namesuch as physically impaired. In anycase each state is mandated to offersuch a program for these children.)

Instructional expectations can betemporarily lessened offering quiettime coping tools such as writing ordrawing in a journal, reading silentlyor independently playing an academ-ically developing game like “Memory,”until stamina (the ability to focus andto stay on task), is more achievable.

Modified homework expectations are appropriate until home medicalregimens, such as compliance intaking medications and bloodpressures are established. These areoften stressful for the child shortly

after transplant. Time spent on these,plus homework may add stress to thetime at home after a full school day.Down time is essential.

Begin to develop a relationship withthe school principal because he or shecan be a constant from grade to grade.The progression from compromisedhealth and severe surgery to renewedwellness is a long and gradual road.The principal can be a mediator asyour child moves into new classroomexpectations each school year. Sinceemotional health promotes physicalhealth, it is critical to gainunderstanding and support from yourchild’s school.

Michael’s medical and educationalteams were both instrumental inbringing him to health and normalcy.Your transplant hospital may have aprogram available where the hospitalstaff will make a visit to the school toeducate the staff and the students ofthe class that your child is returning toabout transplantation. As parents, it isstill up to us to close the circle andfacilitate communication for theoptimal care of our child.

Two years later, we are amazed at howmany minute steps it has taken to seehis huge growth. Our doctors didn’ttell us how much effort we wouldhave to put into keeping educatorsinline with the long-term perspective.

You are your child’s greatest advoc-ate. You are the leading partner withinyour child’s educational development.Be the expert you are!

Karen DeVries, kidney donor andmother of two (including Michael),teaches developmental kindergartenin Rockford Public School inMichigan. She is a developmenteducation Master’s candidate.

TC

Michael DeVries at the RockfordChristian School in Michigan.


side effects are manifested as flu-likesymptoms: headache, fever, chills,nausea and diarrhea. These generallygo away in a few days when thepatient’s immune cells are depleted toa very low number.

The 1990’s were a great decade fornew pharmaceutical advancements.In 1995, two major drugs wereapproved by the Food and DrugAdministration, tacrolimus (Prograf‚)and mycophenolate mofetil (Cell-Cept®). Like cyclosporine, tacrolimuswas also discovered from a soilfungus. These drugs work verysimilarly to each other, howevertacrolimus is much more potent thancyclosporine. Unfortunately,tacrolimus also has adverse effectsattributed to it. These include nausea,vomiting, diarrhea, increased bloodsugar levels and possible kidneytoxicity.

Mycophenolate mofetil is a drug thatwas developed to take the place ofazathioprine, a drug which had beenaround since the 1960’s. It preventsorgan rejection by selectivelyinhibiting the growth of lymphocytes.These are cells of the immune systemwhich attack foreign objects in thebody. Adverse effects withmycophenolate mofetil includediarrhea, upset stomach and decreasedblood counts.

In 1997 and 1998, further monoclonalantibodies were introduced,daclizumab (Zenapax®) andbasiliximab (Simulect®). These drugsare termed IL-2 receptor antagonistsand are bio-engineered from mice andhuman antibodies. Their mechanismof action is to decrease T-cell activityagainst transplanted tissue and areused along with cyclosporine andcorticosteroids in order to preventacute rejection. Daclizumab andbasiliximab are very well toleratedwithout significant adverse effects.

Finally, in 1999 a drug whosecompound was found on the remoteEaster Island in 1964 becameavailable for use in the United States.It is known as sirolimus (Rapamune).This drug is also used in combinationwith cyclosporine or tacrolimus andcorticosteroids to prevent organrejection in solid organ transplants.T-lymphocyte activation andproduction is blocked with this drug.Some of the adverse effects includehigh blood pressure, headache,increased cholesterol levels, nausea,vomiting, diarrhea, problems withwound healing and decreased bloodcounts.

Also in 1999, another new drug wasapproved by the FDA for use in theprevention and treatment of acuterejection (antithymocyte globulin-

rabbit or Thymoglobulin®).Thymoglobulin was shown to bemore effective than its predecessorATGAM (antilymphocye globulin-horse) in the treatment of acutekidney rejection. Thymoglobulin andATGAM are known as ‘polyclonalantibody’preparations.

Thymoglobulin, like OKT3 can causeflu-like symptoms, can reduce bloodcounts, etc. These side effects areusually worse early in the treatmentcourse and become less noticeable asthe treatment progresses.

From corticosteroids to bioengineeredantibodies, immunosuppressive drugtherapy has developed tremendouslyover the past 50 years. Patient andorgan transplant survival is becomingmore and more successful with theuse of these treatments. Researcherscontinue to search for newcompounds that have less adverseeffects associated with them and thatare more effective than the currenttherapies. The progress made in thedevelopment of immunosuppressionhas furthered our understanding of theimmune system in general, a processthat has not only benefited transplantpatients but patients with cancer, HIV,infection and autoimmune diseases.As more progress is made in the 21stcentury, clinicians are closer tofinding ways to induce immunetolerance, potentially without drugtherapy at all.

Erin M. Bosak and Larry DeCariaare both PharmD candidates at OhioNorthern University in Ada,Ohio. TC

The History of Immunosupressive…Continued from page 16

The first successful pancreastransplant was performed in 1927

on a dog. In 1966 the first humanpancreas transplant took place at theUniversity of Minnesota. Theglucose levels were immediatelynormal and the patient was free ofinsulin infections. Unfortunately, thepatient died of rejection and infectionwithin two months. Between 1966and 1973, 13 more pancreastransplants were done, but only one worked for more than one year. There were many complica-tions, including rejection. A fewmore transplants were done in the1970’s, but most failed due tocomplications from the way theprocedure was done and fromrejection. Commonly, leaks occurredat the site of the stitches.

As early as the 1970’s islet cellswere being studied for transplant.Islet cells are taken from a pancreasand injected into the recipient.Insulin comes from cells in the islets.Surgery is not required for this andso it reduced some risks for patients.As with most other early transplantprocedures the results were poor inboth animal and human transplants.All of these patients still requiredinsulin injections.

By 1978, more pancreas transplantshad been done, surgeons were nowmore experienced and there was anincreased understanding of theimmune system. Pancreas transplantsurvival was at 21 percent by 1982,and 42 percent by 1986. Importantalso was the availability ofcyclosporine in 1983. Rejection wasnow more easily prevented.

Over the past 10 or more yearspancreas and patient survival rateshave continued to increase. Thestatistics from 2000 show a dramaticimprovement, with graft survival at81 percent and patient survival at 96percent. A few transplant centers inthe U.S. are performing islet celltransplants. The results arepromising.

Even today, pancreas transplants arestill considered to be experimental bysome health insurance providers.Only in the last few years hasMedicare provided payment forpancreas transplants. Before approvalof the transplant most providersrequire proof of unstable glucoselevels and/or lack of symptoms oflow glucose levels.

Most transplant centers performpancreas transplants with a kidneytransplant, or later after a kidneytransplant. Type 1 diabetics withoutkidney disease who are frequentlyunaware of very low glucose levelsare candidates at certain centers. Therisk of surgery and immunosuppres-sion for these candidates must be lessthan living with this chronic disease.

Studies show that Type 1 diabeticsreceiving a pancreas and kidneytransplant at the same time will dobetter than those having only akidney transplant. The new pancreasprotects the new kidney from theeffects of diabetes. Insulin injection,frequent blood monitoring anddietary restrictions are no longerrequired. The purpose of pancreastransplant is improvement in qualityof life. Now, thanks to the pioneerresearchers and brave recipients thisis a reality.

Cathy Morrison, MSN, CRNP is anurse practitioner on thekidney/pancreas transplant teamat Albert Einstein Medical Centerin Philadelphia, PA.

TC

Pancreas Transplant Over the YearsBy Cathy Morrison, MSN, CRNP

National Kidney Foundation30 East 33rd StreetNew York, NY 10016

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