Transplant Chronicles - National Kidney Foundation4 Transplant Chronicles, Vol. 7, No. 1 rowth delay...

A publication for transplant recipients of all organs and their families,published by the National Kidney Foundation, Inc.

Volume 7 Number 1

TransplantChronicles

Transplant Chronicles is a Program of the National Kidney Foundation, Inc.,

Pharmaceuticals Corporationsupported by

National Kidney Foundation

transAction!COUNCIL

n February 1995, Faye BlanchardRobichaux’s cousin and dear friend,Gayle Clement, was living withkidney disease, and her health wasquickly declining. Doctors told the43-year-old woman that it was timefor a transplant. “How can I help?”Faye thought. Without hesitation,she decided to give Gayle one of herkidneys. “I know she needs a newkidney. I need only one to live. Ifthere is a match, I’ll do it.”

Tests were done on Faye andGayle, and they were a remarkablematch for cousins. Faye’s husband,John Harvey Robichaux Jr., couldnot understand why she would dothis. Her daughters supported herdecision, but her son and husbandremained reluctant. But Faye knew

that Gayle wastoo dear; sheneeded to live afulfilling life—without dialysis.

Faye andGayle drove tothe hospitaltogether whiletalking, remin-iscing andlaughing, as ifthey were goingon a shoppingtrip. They had

always been close. Gayle said thatFaye had always been a kind, givingperson; she was amazed and, ofcourse, eternally grateful for heroffer.

On May 11, 1995, at OschnerFoundation Hospital in New Orleans,two teams of transplant surgeonsperformed the miracle. Within fourhours, one special nurse wascarrying Faye’s beautiful rich kidneyto the other operating room for theother surgical team to transplantinto Gayle.

Gayle’s kidney function wasrestored and her life color returned.Eyes were closed in prayers ofthanksgiving by her family and JohnHarvey. Within hours after thetransplant, Gayle was wheeled intoFaye’s room. Their eyes met andthey held hands. What can you sayat a time like this? The miraclecontinues to this day.

Although Gayle was healthy again, this was not the end of thetransplant experience for Faye andJohn Harvey. The rich bonds of loveand sharing within the Robichauxfamily would once again motivate aselfless act. John Robichaux Sr.,better know as “Pup” to family andfriends, had been fighting kidney

TheJoyof

Givingby Richard Gibbens

Robichaux

Continued on page 3

I

Connected by transplantation (l-r), Gayle ClementRichard, Faye Robichaux, John Harvey Jr. andJohn Harvey Sr.

2 Transplant Chronicles, Vol. 7, No. 1

editor’s desk Transplant Chronicles ✍

This issue brings you asmorgasbord of transplant topics,from how to enjoy your summerbathing suits despite your scars,getting your picky eater to eat,increasing organ donation andexercise for kids to the hepatitis Binfection, drug interactions, growthhormone for kids and waiting for atransplant.

Take note of the transActionCouncil membership card below. I encourage you tojoin this free organization and receive the manybenefits of membership, including a free home sub-scription to Transplant Chronicles. Just send this formback today and you’ll become a member...it’s that easy!

For those of you who missed transAction’s RoadShow in Denver this January, you’ll be happy to knowthat it is moving from the Colorado Rockies to thedesert of Scottsdale, Arizona, on July 24. For moreprogram and registration information, call the NKF at(800) 622-9010 or visit our website atwww.kidney.org.

Beverly Kirkpatrick for the Editorial Board

TC

Beverly Kirkpatrick

Transplant Chronicles is published by the National Kidney Foundation, Inc.

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

Editor-in-Chief:Beverly Kirkpatrick, LSWPhiladelphia, PennsylvaniaEditors:Ira D. Davis, MDCleveland, OhioMaurie Ferriter, BSLakeland, MichiganJanet Karlix, PhDGainesville, FloridaTeresa Shafer, RN,

MSN, CPTCFt. Worth, TexasNancy Spinozzi, RDBoston, MassachusettsCharlie Thomas, CISW, ACSWPhoenix, Arizona

Editorial Office:National Kidney Foundation, Inc.30 E. 33rd Street, New York, NY 10016(800) 622-9010/(212) 889-2210http://www.kidney.orgExecutive Editor: Editorial Director:Diane Goetz Gigi PolitoskiManaging Editor: Editorial Manager:Sara Kosowsky Marla Behler, MS, CSWDesign Director: Production Manager:Oumaya Abi-Saab Stephanie Knox

Vanessa Underwood, BS, AFAA, ACE

Plaistow, New HampshireJim Warren, MSSan Francisco, CaliforniaBecky Weseman, RD, CNSD,

LMNTOmaha, NebraskaLaurel Williams Todd, RN, MSNOmaha, Nebraska

R. Patrick Wood, MDHouston, Texas

FOR A FREE MEMBERSHIPIN THE TRANSACTION COUNCIL

to receive all of the benefits of membership: a membership card and pin; quarterly issues ofTransAction Council Connection membership update and Transplant Chronicles newsletter;information on transplant athletic programs, a voice in legislative and public policy issues;participation in NKF educational programs and activities.

Just fill out the form below and mail it to the transAction Council, c/o National KidneyFoundation, 30 East 33rd Street, NY, NY 10016.

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Transplant Chronicles, Vol. 7, No. 1 3

disease with a restricted diet and dialysistreatments. At the age of 75, he had resignedhimself to a limited lifestyle with his wife, Dot, hischildren and grandchildren. Little did he knowthat his children had met and agreed that theycould help their beloved father.

John Harvey Jr., Faye’s husband, was a matchfor his father. John Harvey had experienced themiracle of transplant with Gayle and Faye, and hedid not hesitate to proceed. All medical testsproved that father and son were a good match.Pup was reluctant, feeling he had lived out his life,but John Harvey would not take no for an answer.When he got the good news and the date was set,John Harvey called Pup and went to see him. AfterJohn Harvey gave him all the information, the twoembraced in tears.

The many hours of prayer and thoughts aboutthe transplant reached a climax on February 13,

1997, at Mercy Hospital in New Orleans, whenJohn Harvey Jr. gave one of his kidneys to hisfather in a four-hour operation. Within a week, thetwo Robichauxs were walking together, adjustingto their new lives. Today, Pup is looking forward toswinging the driver and nine iron again and livingin daily thanks to his son for such a monumentalgift. John Harvey has resumed his job as asalesman and rides his bike with Faye, also abicycle enthusiast, on weekends.

Faye and John Harvey felt honored by theopportunity to share parts of themselves to helpothers. Attitude, optimism and hope are theingredients for successful transplant surgery, andJohn Harvey, Faye and the medical staffs at bothhospitals certainly had those unique and specialattributes. They gave Gayle and Pup a secondchance at life.

This article was adapted with permission from“The Joy of Giving” in Louisiana Roux Magazine. T

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The Joy of Giving…continued from page 1

ctor and transplant recipient Larry Hagman,of “Dallas” fame, aided the NKF and lawmakerswhen they announced the introduction of theImmunosuppressive Drugs Coverage Act at aMarch 16 news conference on Capitol Hill.Medicare currently limits coverage for thesemedications to 36 months after transplantation.This proposal would eliminate that 36-month time limitation.

Representative Charles Canady (R-FL),Representative Karen Thurman (D-FL), SenatorMike DeWine (R-OH) and other members ofCongress joined Mr. Hagman to stress the impor-tance of this proposal. The members of Congressshared stories from their constituents about themany hardships they face while trying to pay forthese medications. They also stressed that itmakes little sense that Medicare pays for an organtransplant but not the follow-up care. Represent-ative Thurman, whose husband had a kidneytransplant, criticized the fact that patients whocannot afford the drugs suffer organ failure andthen go back on dialysis and hope for a secondtransplant.

“I’ve seen first hand how transplantation canrestore life and I’d hate to see it taken away

again,” said Mr. Hagman. Hagman is also thehonorary chairman of the NKF’s transActionCouncil. The members of Congress and Mr.Hagman were joined at the news conference bythree other transplant patients and Dr. JimmyLight, director of transplantation services atWashington Hospital Center.

The National Kidney Foundation has beeninstrumental in the formation of an Immunosup-pressive Drugs Coverage Coalition that will helpmembers of Congress promote and pass thislegislation. Anyone interested in more informationabout these bills and willing to advocate for theirpassage should contact the NKF Office ofScientific and Public Policy at (800) 889-9559, fax (703) 524-8586. T

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Larry Hagman Helps NKF and LawmakersUnveil Immunosuppressive Drugs Act

Larry Hagman

supports the

Immunosup-

presive Drugs

Coverage Act at

a March news

conference.

A


rowth delay is common in children waitingfor an organ transplant, due to the failure of thekidney, liver or heart. This growth delay isprimarily caused by malnutrition frominadequate calorie and protein intake, highercalorie requirements, and protein loss in dialysispatients. Other factors that can contribute togrowth delay in children with chronic renalfailure are a calcium and phosphorus imbalancefrom lack of calcium and vitamin D in the diet;inadequate absorption of nutrients within theintestines; and resistance to growth hormone, asubstance that is responsible for normal growthof bone and cartilage.

Growth in children is often delayed during thefirst 12 months after transplantation. This isapparently caused by high doses of certain anti-rejection medications, such as prednisone.Although long-term studies followingtransplantation show that children whoreceive liver and heart transplants oftenexperience catch-up growth, this is notalways true in children who receive kidneytransplants. The North American PediatricRenal Transplant Cooperative Study(NAPRTCS) demonstrated that childrenwho receive a transplant before age oneshow the greatest improvement in growthover the next five years. Children whoreceive a transplant between ages one andfive show improved growth, but to a lesserextent. Children who receive a kidney afterage five do not show significantimprovement in their growth.

Many strategies have been used to improvegrowth in children following a kidney transplant.One approach is to withdraw prednisone if achild remains rejection-free for six to 12 monthsafter transplantation. Although some childrenshow significant improvement in growth whenprednisone is discontinued, others develop severekidney rejection. Alternate-day dosing ofprednisone has also been used to accelerategrowth in these children. Several studies havedemonstrated improved growth rates after one totwo years of alternate-day therapy, without anyharmful effects on the kidney.

Another strategy is daily injections of humangrowth hormone, which has been used in the lastfive years in selected children. Side effects fromthis drug, which are rare, include elevated bloodsugar levels, bone deformities of the hips or mildelevations of the pressure within the brain.Growth hormone has been used in short childrenwith various endocrine conditions. It has alsobeen used successfully in malnourished adultdialysis patients to help them gain weight andcontrol and improve their overall nutritionalstate.

Growth hormone is currently approved for usein children with chronic renal failure who haveshort stature; significant increases in growthrates have been shown following daily injectionsof this drug. Growth hormone has also been usedsuccessfully in many pediatric kidney transplant

recipients, although other patients do notshow any significant improvement. Theeffect of steroids, kidney function andage, as well as the growth rate prior tostarting growth hormone therapy, mayexplain these differences. Additionalconcerns raised with the use of growthhormone are the risk of rejection andfear of worsening of kidney function.

A recently-reported French study todetermine the safety and effectivenessof growth hormone therapydemonstrated a significantimprovement in the growth rate of most

children receiving this therapy. Three groups ofchildren showed the best response: those whohad higher growth rates prior to treatment, thosewith reduced function of their kidney transplantand those who received prednisone on alternatedays rather than daily. Patients who had fewerthan two episodes of rejection before startinggrowth hormone showed no significant increasein rejection risk. A similar study is currentlyunderway in the United States.

Growth hormone therapy is a well-establishedtreatment for children with chronic renal failureand short stature prior to transplantation.

Use of Growth Hormone in Children With Kidney Transplants

by Ira D. Davis, MD

G

p


Although several studies suggest that it is safeand effective in kidney transplant recipients withshort stature, further long-term studies areneeded before it becomes an accepted standardof therapy. Therefore, it is essential that childrenwith short stature and their parents discussthese issues with their pediatric nephrologistand transplant surgeon when growth hormonetherapy is being considered. T

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The Use of Growth Hormone…

continued from page 4

ask the pharmacistAre there drug interactions that can affect how my

anti-rejection medications work? by Janet Karlix, PhD

hen one drug interacts with another one, itcan affect the way the drugs do their jobs. A druginteraction occurs in one of several ways.Generally one drug alters the absorption (thebody’s taking in) or elimination (the body’s gettingrid) of another drug. There are only a few druginteractions that are clinically important in atransplant patient. It is your responsibility to beaware of all the drugs you are taking to preventharmful interactions.

Absorption interactions usually involve anincrease or decrease in the amount of a drug thatgets taken into the body. One drug may decreasethe absorption of another drug in a couple ofways. In the stomach or intestines, one drug maybind to another drug, thereby preventing it frombeing absorbed into the bloodstream. Forexample, antacids and iron tablets will bind toand prevent the absorption of some antibiotics.Also, a cholesterol medication calledcholestyramine and some fiber supplementscontaining psyllium can also inhibit theabsorption of many medications. Both of thesetypes of interactions can be avoided by separatingthe dosing times of interacting drugs by at leasttwo hours.

The most common type of drug interactionhappens when one drug changes the rate ofanother drug’s elimination from the body. If onedrug increases the rate of elimination of anotherdrug, then there would be less of the affected drugavailable to do its job. The opposite is also true. If

one drug decreases the rate of elimination ofanother drug, then there would be too much ofthe affected drug, and increased side effects ortoxicity could result.

Most transplant patients take eithercyclosporine or tacrolimus. Drug interactions caneasily happen with these two drugs. Any drug thatincreases the rate of cyclosporine or tacrolimuselimination (and thus lowers the drug level in thebody) increases the risk of rejection of thetransplanted organ. Drugs that may lowercyclosporine levels in this way include rifampinand some anti-seizure medications like phenytoinand carbamazepine. Drugs that decrease the rateof elimination of cyclosporine and tacrolimuscause their levels to be raised. This can lead to adangerous increase in the risk of side effects andtoxicity. Drugs that can cause increased levels ofcyclosporine or tacrolimus levels includeantihypertensives such as diltiazem andverapamil, antibiotics such as erythromycin andclarithromycin, antifungals such as keto-conazole and itraconazole, as well as others.

As more and more new drugs are released, itbecomes increasingly more difficult to keep upwith all of the potential interactions. The mostimportant thing for transplant patients to remem-ber is that it is vitally important that both yourphysician and your pharmacist are aware of everymedication that you take and that you report anypossible side effects as soon as they appear. T

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keeping fitActive Kids Are Healthy Kids!

by Vanessa A. Underwood, BS, AFAA, ACE

emember how we used to play when wewere kids? Memories of childhood bring me backto the days when my five siblings and I wouldjump out of bed early on a summer morning tomeet our friends outside to play. And we wouldplay from morning until evening. We couldn’t getenough of swinging on the leaves of the willow,jumping as far as we could and tumbling to ourdestinies.

It seemed we were never at a loss forsomething to do. It was a wonderful carefreetime, without the stress and pressure that maygo along with playing organized sports today. Wewere extremely active and physically fit, yet wedid not have formal training, nor were any of ouractivities an organized sport (although I believewe were quite an organized group!)

Today, play is more complicated. Manychildren spend most of their recreational timeplaying organized sports. Whether they play T-ball, soccer, softball, baseball, track and field,volleyball or field hockey, it is usually organizedthrough their school or an independent league.

If you have a child or a teen who has beentransplanted, he or she might not participate insports that much. Many children, and parents ofchildren, who have had a transplant are underthe impression that they should “take it easy”and not play sports or lead a physically activeand challenging life. THIS IS NOT TRUE! Aftertransplant, some patients may hesitate toexercise because they are unsure of what theycan do and fear injury, rejection and harmingtheir transplanted organ. However, your child canlive a normal, quality life with a transplant. Justremember that he or she should avoid any directhit to the transplanted organ and get a doctor’spermission before beginning any exercise orfitness activity. Then proceed with commonsense!

Sports can help you or your child gain arenewed sense of control over life. So, whichsports are best for your kids? It has beenrecommended that children should be introducedto a variety of sports when they are young sothey can find one they like. Before age seven oreight, most kids are not ready for competitivesports. Many team sports involve bodily contact,which could be too tough on their bodies. At thisage, the emphasis should be on basic skills,sportsman-like behavior and, most important,having fun!

The best time to introduce your child to teamsports is between eight and 12 years of age. Ifyour child chooses to play softball, volleyball,basketball or any sport where he or she mightcollide, bump or fall, you may want to take bodysize into consideration. It is important to keep inmind your child’s physical ability; you don’t wanta situation that may destroy self confidence.

If your child is over 12, almost any sport is anoption. It has been recommended that kids be atleast 12 before they begin any long-distancerunning. Weight training has been a somewhatcontroversial subject, but the majority of expertsseem to agree that 16 is an appropriate age forthis activity.

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Children gain confidence and skill fromplaying sports.

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biking, weight training) can prevent overuseinjuries, which usually occur in sports withrepetitive actions.

If your child is not involved in a team sport ororganized sport, there are alternatives. We stillhave roads and bikes and jump ropes. Childrenlearn so many valuable lessons from the adultsin their lives. Teach them by example! Choose ahealthy lifestyle for yourself and include yourchildren in it. T

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It is critical to longevity and quality of life foryour children to be active in various sports allyear round. This will help them not only tomaintain cardiovascular fitness and muscularstrength, but will keep their bodies in goodbalance. Cross training (swimming, running,

This Issue’s Hot Topic Hot Topic Response (Issue 6:4)

Following is a sample of responses to the

Hot Topic from last issue: Should a system

for donor swapping be developed on a

national level? Why?

I believe the donor exchange is a good idea

with the shortage that we have. That way, if

someone wanted to donate to save a relative but

couldn’t do it, he or she could donate to

someone else and still save the loved one.

There has been much controversyconcerning organ allocation this past year.One recommendation is that if you receive atransplant at a center outside your localorgan procurement organization (OPO) area,then the donated organ should have toaccompany you from your OPO. Do you agreewith this?

Call the Hot Topic hotline at (800) 622-9010 ext. 855 to leave your response.

1. Choose a program that has clear policies on first aid and refers injuredplayers for medical care.

2. Be sure the coaches are aware of your child’s medical condition.

3. Warm-ups and stretching should be done before exercise, and cool-downs and stretchingshould be done after exercise.

4. Make your child aware beforehand of the basic skills required and rules of the game.

5. Make sure your child wears protective gear.

6. Be sure that facilities and equipment are well maintained.

7. Never let your child play in pain.

8. Focus on successes, but don’t place too much emphasis on winning.

9. Aim for participation, not perfection.

keeping fit continued from page 6

pppp Here are some tips in looking for a safe fitness or organized sports

program for your kids and helping them get the most out of it:


kidney recipient, Walter Rettenger of TeamAustria, who achieved the fastest finish times ofall age groups and both sexes; Suzanne Knutti ofTeam Switzerland, who also posted the fastedfinish times of all age categories in the women’sdivision, winning three gold medals in the giantslalom, parallel slalom and special slalom; andJan Gunnar Skjelbek of Norway. The Fair PlayCup went to Bob Skaggs, who, at 62 years of age,was the second-oldest competitor. Bob dedicatedhis award to his donor, whose photograph hewore around his neck.

The Games were presented by the NKF underthe auspices of the World Transplant GamesFederation. The event was covered live viawebcast by TransWeb at www.transweb.org.Coverage and competition results can be viewedon the NKF Website at www.kidney.org. T

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International Athletes Compete in Winter Transplant Games

“I loved having the opportunity to spread theword about organ donation at the Winter WorldTransplant Games and to show that you can notonly survive, but also be incredibly active after atransplant,” said Karen Couture, transplantathlete. “For me, it was quite a unique thingbeing a double lung recipient from Florida andcompeting at high altitudes.”

Karen was one of 62 competitors with a life-saving organ transplant vying for gold, silver andbronze medals in alpine and nordic skiing eventsat the III Winter World Transplant Games, heldJanuary 10-14 in Snowbird, Utah. The WinterWorld Transplant Games is an internationalcompetition celebrating the success oftransplantation by showcasing the world’s best intransplant athletic alpine and nordic skiing andsnowboarding. From the Opening Ceremonies tothe final day of competition, athletes from aroundthe world proved time and again that organ andtissue donation works.

Participating athletes came from Austria,Canada, the Czech Republic, Denmark, Finland,France, Germany, Great Britain, Hungary,Norway, Slovenia, Switzerland and the UnitedStates. “It was a wonderful experience to meetpeople from around the world,” said athlete andkidney transplant recipient Bob Skaggs of NewMexico. “It didn’t feel like we were competingagainst each other — we all cheered each otheron. It was like being on one team.”

The feats of the athletes did not go unrecog-nized; awards were presented during the ClosingCeremonies. The Performance Challenge Cup isintended to honor the athletes who havedemonstrated outstanding achievement at theGames. It went to three athletes: a 42-year-old

Team USA smiles proudly at the World Games.

It’s all downhill from here!

1999 WORLD TRANSPLANT GAMES MOVED TO BUDAPEST, HUNGARY

September 3-13, 1999

The World Transplant Games is theshowcase for the finest athletic skillamong the world’s transplant athletes. Alleligible U.S. residents will compete aspart of TEAM USA, which comprises 150

athletes who are selected on a first-come, first-servedbasis. World Games events include table tennis, track& field, squash, badminton, mimi marathon, volleyball,tennis, golf, swimming, cycling, chess, fencing, andmore!

For eligibility and costs, visit our website atwww.kidney.org, or call the NKF at (800) 622-9010. Forregistration requests, call ext. 932 at the NKF or [email protected].

Transplant News DigestReport on Local Patient Waiting Times for Organs Seems to Bolster

HHS Charge That Current System is Unfairby Jim Warren, editor and publisher

From the editors of Transplant News

In a finding that appears to support thefederal government’s new organ allocation plan,the first report ever released on local waitingtimes shows that the length of time people waitfor a transplant is directly affected by where heor she lives. For example, a liver patient withtype O blood waits just 46 days in Iowa,compared with 721 days in westernPennsylvania.

Department of Health and Human Services(HHS) Secretary Donna Shalala used the resultsof the report, which was prepared by the UnitedNetwork for Organ Sharing (UNOS), to bolsterthe government’s ongoing attempts to requirethat organs be allocated on the basis of medicalneed, not on where patients live.

“This report contains some of the strongestevidence yet that our nation’s organtransplantation system needs improvement,”Shalala said in a statement. “It makes clearerthan ever that patients can be disadvantaged bythe simple fact of where they live and at whattransplant center they are listed.”

The seven-volume, 2,400 page report includesdata on local waiting times for patients placed ona transplant waiting list during two periods:1993 to 1995 for kidneys, and 1994 to 1996 forpancreas, kidney-pancreas, hearts, livers andlungs. The report also documents the number ofregistered patients transplanted, organ recoveryrates from 1994 to 1996 for each OPO, andadditions to and removals from waiting lists foreach transplant program nationwide.

A spokesperson for UNOS, the leadingadversary against changing the current system,which gives patients on a local waiting list firstpriority for an organ before it can be consideredregionally or nationally, said the report findingsare based on somewhat outdated informationthat is three to five years old.

“We see the report as a resource to givepatients a rough idea of how long they may haveto wait in a particular area,” the spokesperson


said. “However, we think that changes we havemade in the past two years have made adifference and that new data will show changeshave taken place.”

HHS suggests the blame belongs with UNOSfor not releasing data on waiting times in atimely fashion. “This report is a step forward, butit is still not the kind of timely and user-friendlyinformation that patients and their physiciansreally need,” said Claude Earl Fox, MD,administrator of the Health Resources andServices Administration (HRSA), the governmentagency that oversees the day-to-day activities ofUNOS. “Our goal is for future reports [fromUNOS] to present more current information in aform that is more understandable for patients,their families and their physicians, includingwaiting time data for each transplant center.”

UNOS has taken steps to change its currentbylaws to allow for releasing an expanded datareport on a regular basis. A change in the bylawswas out for public comment, and the UNOSboard was asked to vote on the changes.Assuming the changes are adopted, new up-to-date data should be available by June.

HHS regulations requiring UNOS to developnew policies that would help assure that organsgo to patient with greatest medical need, inaccordance with sound medical judgment andeffective use of organs, are to take effect onOctober 21. Congressional legislation last falldelayed implementation of the regulation, whichwas issued in April 1998. The Institute ofMedicine (IOM) is charged with reviewing theregulation proposal and will issue its findings inearly summer.

Here is a region-by-region look at the currentmedian wait that a patient with blood type Owaited in 1994-1996 for a liver transplant. Thenationwide median wait was 374 days.

REGION 1: Maine, Vermont, New Hampshire,Massachusetts, Connecticut, Rhode Island - 958days.


IOM launches Congress-mandated comp-rehensive study of controversies surroundingU.S. organ allocation system

With the U.S. transplant community poised toundergo a fundamental overhaul of the organallocation system, the federal government haslaunched a comprehensive study of the proposednew policy that would distribute organs on thebasis of medical need, rather than geographiclocation.

The Institute of Medicine (IOM), facing an earlysummer deadline, announced it would hold threemeetings of a newly-appointed committee that willmake recommendations on the currentcontroversies surrounding the organ allocationsystem in the U.S.

The Department of Health and Human Services’proposed regulation, which mandates that organsbe allocated to the sickest patients first, based oncommon medical criteria and medical judgment,regardless of geographic location, is scheduled togo into effect on October 21.

The first of the hearings was held on March 11-12 in Washington, D.C., about five months afterthe IOM received the charge by the U.S. Congress,through the Government Accounting Office (GAO),to conduct a study to review “current policies ofthe Organ Procurement and TransplantationNetwork (OPTN) and the final rule.”

The IOM study was a provision in a rider to theHouse Labor, Health and Human Services andEducation Bill passed by Congress last October,which mandated a one-year moratorium on theDepartment of Health and Human Servicesregulation of the OPTN. The rider was tacked onto the legislation by Rep. Bob Livingston (R-LA),the short-lived speaker of the house, who resignedfrom Congress in January.

The IOM committee will examine the currentsystem and the potential impact of the proposedregulations on:

1) “access to transplantation services for low-income populations and racial and ethnicminority groups, including the impact of statepolicies (under title XIX of the Social Security Act)regarding payment for services for patientsoutside of the states in which the patients reside;

2) “organ donation rates and impact of broadersharing, i.e., based on medical criteria instead ofgeography, on donation rates;

3) “waiting times for organ transplants,including a) determination specific to the various

REGION 2: Pennsylvania, New Jersey,Delaware, Maryland, West Virginia, District ofColumbia - 572 days.

REGION 3: Arkansas, Louisiana, Mississippi,Alabama, Georgia, Florida - 123 days.

REGION 4: Texas, Oklahoma - 213 days.

REGION 5: California, Nevada, Utah, Arizona,New Mexico, Hawaii - 723 days.

REGION 6: Washington, Oregon, Idaho,Montana, Alaska - 344 days.

REGION 7: North Dakota, South Dakota,Minnesota, Wisconsin, Illinois - 393 days.

REGION 8: Wyoming, Colorado, Nebraska,Kansas, Iowa, Missouri - 384 days.

REGION 9: New York - 496 days.

REGION 10: Michigan, Indiana, Ohio - 475days.

REGION 11: Kentucky, Tennessee, Virginia,North Carolina, South Carolina - 308 days.

The report, titled “The OPTN: Waiting ListActivity and Donor Procurement,” includes anexecutive summary and six additional organ-specific volumes (kidneys, pancreas, kidney-pancreas, hearts, livers and lungs) with tables onOPO-specific median waiting times, number ofpatients transplanted and donor procurementactivity, as well as waiting list activity (withadditions and removals) for each transplantcenter.

A graphic analysis is presented on medianwaiting time data. Because greatly variablecircumstances surround waiting times, manyOPOs accepted an offer to include a narrativeexplaining the issues affecting their waiting timesand donor procurement activity. Each volume hasa user’s guide with frequently asked questions,background on statistical methods, data collectionand analysis, and multiple issues that impactwaiting times.

HHS stresses that the new report should beused in conjunction with “The 1997 Report onCenter Specific Graft and Patient Survival Rates,”released in December 1997, which provides dataon actual and expected survival rates for nearly100,000 transplants.

The executive summary of “The 1997 Report ofthe OPTN: Waiting List Activity and DonorProcurement” can be accessed from UNOS Websiteat www.unos.org. Organ-specific volumes may beordered by calling UNOS at (804) 330-8541.

geographic regions of the United States, and ifpracticable, waiting times for each transplantcenter by organ and medical status category, andb) impact of recent changes made by the OPTN inpatient listing criteria and in measures of medicalstatus;

4) “patient survival rates and organ failurerates leading to retransplantation, includingvariances by income status, ethnicity, gender,race or blood type; and

5) “costs of organ transplantation services.”

New Jersey residents who sign drivers’licenses now added to state registry

Residents of New Jersey who sign their drivers’licenses indicating their desire to be organ donorsare now automatically registered as donors for thefirst time. Governor Christine Todd Whitmansigned a new law that went into effect onFebruary 25, which created the registry. NewJersey joined sister states Pennsylvania andDelaware as one of a handful of states in the U.S.with such a registry.

New Jersey residents who sign their licenseswill have their wishes entered in their computer-ized drivers’ records, which can be accessed todetermine if they are donors in the event of death.

“Our experience in Pennsylvania hasdemonstrated that official state registries canabsolutely help increase organ donations,” saidHoward Nathan, executive director of theDelaware Valley Transplant Program (DVTP),which services southern New Jersey, easternPennsylvania and Delaware.

The DVTP announced recently that it had thelargest number of organ donations in 1998 for thethird year in a row. A total of 298 area residentsdonated organs that resulted in 927 patientsgetting heart, kidney, liver, lung and pancreastransplants. It marked the fifth straight year thatorgan donations increased in the region, theDVTP said.

Increased incidence of cancer found with useof cyclosporine not a risk to transplantpatients, experts say

The increased risk of cancer associated withthe use of the immunosuppressant cyclosporinein transplant recipients appears to result from adirect effect on cells, not simply by impairment ofthe immune system.

“The high incidence of neoplasm and itsaggressive progression, which are associated withimmunosuppressive therapy, are thought to bedue to the resulting impairment of the organrecipient’s immune-surveillance system,”explained Minoru Hojo, PhD, of CornellUniversity, and a multinational team in theFebruary 11 issue of Nature. But the researcherssaid the drug also acts directly on tumor cells byincreasing production of transforming growthfactor-beta (TGF-b), a naturally occurring proteinthat induces tumor progression and metastasis.

The scientists found that cyclosporine appearsto promote the growth of pre-existing tumors inmice with severely deficient immune systems. Butwhen they blocked TGF-b with specific antibodies,it neutralized these drug effects and prevented thespread of tumors. Nonspecific antibodies had nosuch effect; however, the researchers believe thisimplicates cyclosporine-induced TGF-b productionas the underlying mechanism responsible fortumor growth.

In an accompanying editorial, Gary Nabel, MD,of the University of Michigan in Ann Arbor, wrotethat the study is “certainly provocative, callinginto question the proposed mechanism by whichcyclosporine induces secondary cancers.” ButNabel points out that several questions remainunanswered by Hojo’s study. In particular, hesaid it is unclear “...whether cyclosporine has asimilar effect on precancerous cells, or whether itis involved in converting cells from a benign to acancerous state.”

Nabel added that the study does not changethe catch-22 that transplant physicians haverecognized for years—transplant patients neednew organs to survive, but cyclosporine, the drugthat is key to preventing allograft rejection, alsoincreases the risk of cancer. “The newobservations do not alter this risk, nor do theysuggest that any additional precautions be takenbeyond those already recognized,” Nabelconcluded. “But they do provide an insight intohow these cancers come about and may be usefulin treating them.”

Responding to the article, Geoff Cook, aspokesperson for Novartis, a manufacturer ofcyclosporine, said the findings do not representan increased risk to patients. “Cyclosporine ismost often used to treat patients with life-threatening conditions. We think that the benefitsare well-balanced in comparison to the risks.”



Heart transplant recipients benefit fromexercise rehabilitation

Patients receiving heart transplants, like thoseundergoing coronary artery bypass surgery, areaffected by preoperative inactivity andpostoperative deconditioning, and can potentiallybenefit from exercise rehabilitation.

Researchers at the University of California atLos Angeles (UCLA) and the West Los AngelesVeterans Affairs Medical Center prospectivelystudied 27 heart transplant patients randomlyassigned to participate in a six-month structuredcardiac rehabilitation program (study group; 14patients) or to undergo unstructured therapy athome (control group; 13 patients). They foundthat exercise training was well tolerated by thestudy patients; it increased overall exercisecapacity and did not increase the incidence ofrejection.

“The practical implications of these results arethat improved work capacity can be achieved in astructured, individualized exercise program,”wrote Jon Kobashigawa, MD, and his co-authors.“By implication, increased exercise capacity maylead to participation in more strenuous activitiesand thus to a better quality of life, since moreactivities can be performed.”

The authors speculate that concern aboutwhether the denervated transplanted heart cantolerate the physiologic stress of exercise trainingand fears that exercise might precipitate acuterejection of the transplant may underlie thereluctance to prescribe exercise training aftertransplantation. While they concede that thesmall size of their study limits the strength of theresults, they contend the end points of exercisecapacity are relatively objective and suggestimportant differences between the study andcontrol groups. Based on their findings, theresearchers conclude “exercise training should beconsidered standard postoperative care for hearttransplant recipients.”

Jury finds Aetna guilty of refusing to pay forBMT treatments, awards woman record$120.5 million

A California woman who claimed her HMOwithheld coverage for bone marrow treatments forher cancer-stricken husband has received thelargest jury award ever given in the U.S.—$120.5million.

Teresa Goodrich of San Bernadino sued AetnaU.S. Health Care for wrongful death, claiming the

company refused to pay for treatment its ownphysicians recommended at a hospital outside theplan’s network. The jury found that Aetna hascommitted “malice, oppression and fraud,” andcontributed to the shortening of her husbandDavid’s life.

The jury awarded $116 in punitive damages and$4.5 million for medical expenses and loss ofcompanionship. Lawyers said the award was byfar the largest in the U.S. ever against an HMO fordenying health care. The previous record was a$89.3 million in 1993 against HealthNet, also forrefusing to pay for a bone marrow transplant.

Aetna said it will appeal the jury’s decision.However, the company announced that beginningin July, its six million members will be able toappeal insurance coverage denials to committeesof independent physicians, and Aetna said it willabide by the decisions.

Use of ATG increases risk of CMV infectionduring early post-kidney transplant period,Chinese report

Use of the immunosuppressant antithymocyteglobulin (ATG) increases the risk of cytomega-lovirus (CMV) infection and disease during the earlypost-transplant period among cadaveric kidneyrecipients, according to Chinese researchers.

David Chong-wah Siu, MD, and his colleaguesat Queen Mary Hospital in Hong Kongretrospectively studied 116 patients givencadaveric kidney allografts from 1983 to 1998.The investigators observed a statisticallysignificant association between the use of ATGwithin the first month following renaltransplantation and the development of CMVinfection during the first 90 days after surgery.Thirty-four patients developed CMV infection, and11 patients developed CMV disease. Eighteen ofthe 34 patients with CMV infection and nine of the11 with CMV disease had received ATG.

“These associations persisted on logicalregression analysis, taking into account othervariables such as demographics and the use ofother immunosuppressive agents [cyclosporine orazathioprine],” said Siu.

Siu plans on re-analyzing the data bycategorizing patients who received differentcombinations of immunosuppressants, but hebelieves the conclusion that ATG is a risk factorfor CMV infection is firm. “. . . If anything, [thereanalysis] will make the observation moresignificant,” he predicted. T

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food if he or she doesn’t like it.

� Serve small portions. One serving isequal to one tablespoon of food for each year ofage. Large portions can be overwhelming. Letyour child ask for more.

� Pushing or forcing a child to eat is a sureway to create an eating problem. Make mealtimes a pleasant experience. Turn off thetelevision and sit down at the table as a family.Allow your child to eat one food at a time at hisor her own pace.

� Let children help you prepare the meal.Give age-appropriate chores. Even a

toddler can tear up lettuce, scoopmashed potatoes, set the table andhelp clean up.

� Let your child help plan ameal once a week. At mealtime,

remind him or her who chose themeal.

� If vegetables are a problem, trydisguising them. Add pureed vegetables

to ground beef in hamburgers, spaghetti,meatballs, lasagna and casseroles. Add zucchinito baked goods such as breads and pancakes.Grate carrots into peanut butter and spaghettisauce.

� Above all else, remember that you controlwhat food comes into the house, when the foodis offered and where it is eaten. Your childcontrols if food is eaten, what is eaten from thefood offered and how much is eaten.

� If your child has had a lot of medicalproblems, such as long-term ventilator support,tracheotomy, nasogastic tube, or eating hasbeen painful in the past, therapy may be neededto help with eating. Contact your doctor for areferral to a dietitian, speech therapist oroccupational therapist.

Angie is a clinical dietitian in the pediatricgastroenterology department at UniversityHospital, Nebraska Health Systems. T

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eating right

ost of us have had some experience withchildren who don’t want to eat what is on theirplates. We call them “picky” and often just letthem have their way to avoid a fight at the dinnertable and to get them to eat something, no matterwhat it is. One thing to remember if you aretrying to feed a picky eater is that children willeat different amounts from day to day. It isimportant to watch your child’s growth over aperiod of months. He or she is eating enough ifgrowth is keeping up with the growth curveaccording to your pediatrician.

It is also important to start teaching healthyeating habits to children in their early years.However, this can be the most difficult time to getthem to try a variety of foods. The followingsuggestions may help you solve some of yourpicky eater’s problems and help avoidthose food battles:

� It is very important forchildren to have routine and structurein their lives, and this also applies toeating. Toddlers who are offeredscheduled meals and snacks, and are notallowed food or caloric beverages (such as juice orsoda) in between, eat up to 1 1/2 times morethan those allowed to snack as much as theywant. Plan meals and snacks two to three hoursapart and offer them in the same place each time.

� Avoid giving too many beverages, such asjuice, soda and milk, between meals; they canmake a child feel full. Serve milk and juice withmeals and snacks, and if a child is thirstybetween meals, serve water. Limit juice to nomore than four to eight ounces daily.

� If your child has had a transplant or hashad trouble gaining weight, it is tempting to lethim or her eat any food at any time. Resist theurge to push the child to eat or drink all day; heor she won’t feel hungry at meal or snack timeand will decrease the total food intake.

� You may need to offer a new food 10 to 15times before a child accepts it and learns to likethe food. Ask your child to take one bite of a newfood each time it is offered, but don’t force the

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But I Don’t Like Vegetablesby Angie Iverson, RD, LMNT


epatitis B is an infection with a virus thatusually affects the liver. It is the most commonchronic infection in the world and a major publichealth problem, yet it is easily preventable. Overthree million people worldwide are infected withthe hepatitis B virus, mostly in Africa or Asia.However, over 1.2 million people in the UnitedStates are infected with the virus; there are morethan 300,000 acute infections with the hepatitis Bvirus each year in the United States.

Infections with the hepatitis B virus can spreadfrom person to person either through contaminat-ed blood or blood products, or by the exchange ofbody fluids. Hepatitis B virus is present in saliva,tears, semen, vaginal secretions and breast milk.

Risk factors for contracting hepatitis B includegetting contaminated blood or bloodproducts by sharing unsterilized needles,getting tattoos or body piercings, andaccidentally receiving contaminated bloodin the health care setting. Even suchthings as the splashing of blood in theeyes or sharing toothbrushes or razorscan result in the transmission of hepatitisB from one person to another. Infectedmothers can transmit the virus to their childrenand, unfortunately, most of these children willhave the virus for life. It can be spread throughboth heterosexual and homosexual contact.However, unlike the hepatitis A virus, which canbe spread through contaminated food products,hepatitis B is rarely spread in this way.

Infections with the hepatitis B virus usuallypresent themselves in one of four ways, which isinfluenced by the age, sex and immune status ofthe individual who gets the infection. Most casesof acute hepatitis B infection are associated with arelatively mild illness, sometimes with thedevelopment of jaundice.

Most patients will recover from this illness, andwill then be immune to the hepatitis B infection.However, some patients do not completely recoverfrom the infection and have the hepatitis B virusin their bodies forever. This second group ofpatients are called chronic carriers and may go onto develop liver cirrhosis and require liver

transplantation. The vast majority of infants whodevelop acute hepatitis B infections will becomechronic carriers, while only one to five percent ofadults who are infected with hepatitis B virus willbecome chronic carriers.

The third type of hepatitis B infection is calledsub-acute hepatic necrosis. The infection is moresevere, and patients develop significant liver injuryand may require long hospital stays. Some of thesepatients may even develop enough liver injury torequire urgent liver transplantation.

The least common type of infection withhepatitis B virus is called fulminant hepaticfailure, which results in severe liver injury fromwhich the patient may recover fully, or mayrequire liver transplantation or even die.

The diagnosis of hepatitis B infection ismade by a series of blood tests that checkboth for the virus itself and for antibodiesthat have been formed in a reaction to thevirus. Through these blood tests,physicians can determine those patientswho have had the infection and are cured(immune to the virus); those patients whohave had the infection and are chronic

carriers; and those patients who have very activeviral hepatitis B infection in their livers. Tests arealso available to actually check for the presence ofthe DNA from this virus in the blood; additionally,liver tissue can be stained for the presence of thevirus.

The single most important thing to understandabout the hepatitis B infection is that it can beprevented with a highly effective vaccine given as aseries of three injections spaced over a period ofseveral months. It is recommended that allchildren receive this vaccination shortly after birth.All adults should also be vaccinated as aprecaution in case they are ever exposed to thevirus. At a minimum, anyone associated withtransplantation or dialysis, or working in thehealth care setting, should be vaccinated toprevent an infection with a virus. In theory, itwould be possible to eliminate this infection withinone generation if all individuals were vaccinated.

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medical beatThe Facts About Hepatitis B

by R. Patrick Wood, MD, FACS

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In addition to the vaccine, there is the hepatitis B immunoglobulin, used to treatindividuals who have been exposed to thehepatitis B virus. This is often done inconjunction with vaccination in individuals whohave received a contaminated needle stick orblood that may have been contaminated. Unlikethe vaccination, which provides protection againstfuture infections, the immunoglobulin is used totry to prevent infection in known high-risk

situations. It does not offer long-term immunityto the hepatitis B virus.

Finally, there are treatments available forpatients who develop chronic hepatitis Binfection. However, because these medicationsonly control but do not cure the infection,patients who stop these medications will mostoften develop a recurrence of active hepatitis Binfection. Also, in some patients, the viruschanges to a strain that is not sensitive to themedication. A true cure for hepatitis B willrequire better antiviral medications. T

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Hot Time in the Summertime!by Nancy Spinozzi, RD

medical beatcontinued from page 14

ummer is almost here, and many of us aretrying to figure out how we can stay cool inturtlenecks and long pants. It’s not that we don’twant to wear shorts, halter tops and bikinis, butour figures or skin conditions won’t cooperate! Ifyou’re feeling uncomfortable or self-consciousabout what has happened to your body, here aresome tips to help you feel better about how youlook this summer.

The first thing is to remember that sunexposure is bad—for everyone! Whether you areon steroids or not, dermatologists stronglydiscourage tans, let alone sun burns! If youshow up at a clinic appointment with atan, you can’t very well pretend with thedoctor— “Who, me? What tan?” Sobecause sun exposure is harmfulanyway, staying away from bikinis andshort-shorts should be easy.

For those of you who don’t want to show offtoo much skin, loose-fitting shirts, especially thosemade out of mesh or sheer fabrics, are goodchoices. They come in especially handy overbathing suits. For a little more flair, harem-stylepants in sheer fabrics are stylish, too. Cargoshorts have once again become popular, and theselook great on guys. All of these types of loose-fitting clothing can disguise a little belly as well!Remember that loose-fitting styles and light-colored, lightweight fabrics are always in for warmweather.

When all else fails, try using distractions. Hats,for instance, can pull the focus away from legs orthighs. Floppy, colorful hats are very popularfashion items now. And summertime is the perfect

time to team them up with colorful clothing. Toaccessorize, tie a fancy scarf to a plain straw hat,or glue some flowers on the brim. Hats serve aduel purpose, as they also help shield you fromthe sun. Other distracting items are colorfuljewelry, scarves and fancy shoes and socks.

You also may want to work on how your skinlooks this summer. You can try using correctivemake-up products to cover blemishes or scars:Covermark, which can be purchased at your localpharmacy; and Dermablend, which is available inmany department stores. While using these

products is relatively easy, there is definitelya technique for application that takespractice. A professional make-up artist ina department store or pharmacy wherethe products are sold can share his orher expertise with you.

Finally, I want to share some adviceabout hair styles. If your hair has gotten thin

and brittle, the best bet is to have a hairdressercut it short and layered. This may be far differentfrom your usual style, but much more attractive inits present state. Remember, in time it will growback in, and most likely, back to its old healthyself!

There are many ways you can make the most ofwhat you’ve got. Ask good friends or relatives togive you an honest opinion about your ideas. Theymay even tell you that what you are trying to coverup isn’t a problem at all. Have a great summer!

Author’s Note: To read more about body imageand cosmetic issues, try Beautiful Again: RestoringYour Image and Enhancing Body Changes, by JanWillis.

TC

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Increasing Organ Donationby Teresa Shafer, RN, MSN, CPTC

t the start of the allocation debate that hasunfolded over the past year, the Department ofHealth and Human Services (DHHS) proposed agoal of increasing organ donation by 20 percent.Since then, early signs are that the country hasseen a five-and-a-half percent increase. By mycalculations, that leaves 15 percent to go. Donororgans are not apples sitting on the ground readyto be picked up. Therefore, a 15 percent increasein the next year is unlikely.

The one measure that probably influenced theincrease over the past year (the largest increasesince 1993) was the Medicare HospitalConditions of Participation, which were a bigaccomplishment for DHHS. These regulations,which were not easy to put into place, willprobably do more for organ donation than anyother single action over the past few years. Theseconditions mandate that all deaths in hospitalsbe reported to the local OPO, or fines will beassessed and the hospital’s Medicare licenserevoked. The effectiveness of public education inincreasing organ donation is hard to measureand, as far as some are concerned, nonexistent.1

I believe that an additional 12 percent increasein donations could result from reducing medicalexaminer denials.2 Despite widespread attentionin 1994 given to organ donor losses due tomedical examiner denials, many areas of thecountry still needlessly lose significant numbersof organ donors because a local medicalexaminer, coroner or justice of the peace refusesto release the organs of potential donors. In fact,early data indicate that the problem has notgotten any better since 1992. The United Networkfor Organ Sharing Scientific Registry tracks organdonors lost to medical examiner denials and,although it has not yet been published, earlydata seem to support the 11.4 percent numberfor 1992, which was published in the Journal ofthe American Medical Association (JAMA) in 1994.(This means that of all U.S. potential organdonors, 11.4 percent were denied recovery in1992, possibly denying life-saving transplants to,conservatively, 2,979 people on the waiting list.)

This is particularly a problem with potentialpediatric organ donors who have died due tosuspected child abuse or sudden infant death

syndrome (SIDS). Medical examiner denial islikely one of the major contributing reasons forthe pediatric death rate on the waiting list for aliver transplant in children age five and under.(See figure below.)

Medical examiners and coroners couldsignificantly increase organ recovery in theUnited States if cases falling under theirjurisdiction, after appropriate examination, wereroutinely released for organ recovery andtransplantation.

It is a crucial public policy issue that thesupply of organs and tissues for transplantationbe maximized. To improve the situation,Congress ordered hospitals to come up withprotocols requiring that families of all those whodie in hospitals be requested to donate organs.But one source of donated organs that could betapped immediately are those lost throughmedical examiner denial of organ recovery. Thegovernment could take a leadership role bypassing legislation requiring routine, timely andunobstructed release of all potential organdonors by medical examiners.

While this federal legislation would have towork in conjunction with state laws, it mostcertainly would lead states to pass laws thatmake it impossible for medical examiners toblock the recovery of life-saving organs. Somestates have already taken such steps. Texaspassed legislation in 1995 requiring medicalexaminers to release organs for transplantationunless the medical examiner was physically

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Death Rates on Liver Waiting List

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* Annual death rate per 1000 patient years at risk,for new patient registrations during 1996 * 1996, UNOS data

All Patients onWaiting List

Children Younger than 1 Year Old

248.9

commentary


present in surgery viewing the organ inquestion.

The conclusions made in the 1994 paper havenot changed, but it is now 1998 and they needto be repeated: Organ donation is NEVERincompatible with forensic investigation. The twocan occur in harmony, with medical examinersperforming their crucial role in determining thecause and manner of death, and everytransplantable organ being recovered andtransplanted. These goals are not mutuallyexclusive.

We have also heard over the past year thatgeography should not influence who lives or diesfor lack of an organ. I agree, but for a differentreason than the one cited by Secretary Shalalaand the large transplant centers attempting toinfluence organ allocation. Geography plays abig role because in some areas of the countryorgans are routinely released by medicalexaminers and in others they are not. Shouldsomeone’s life depend upon arbitrary andinconsistent practice when it comes to organloss due to medical examiner denials. There’s abig pool of potential donors out there that wouldbe easy to tap. With the necessary educationand legislation, the donor pool can be increased.

Note: For brevity’s sake, whenever medicalexaminer is mentioned in this article, it meansmedical examiner, coroner or justice of thepeace.

1. Verble M and Worth J. The case againstmore public education to promote organdonation. Journal of Transplant Coordination.December 1996. Vol. 6. No. 4:200-203.

2. Shafer, TJ, Schkade, LL, Warner, HE,Eakin, M, O’Connor, K, Springer, J, Jankiewicz,T, Reitsma, W, Steele, J, Keen-Denton, K. “TheImpact of Medical Examiner/Coronor Practiceson Organ Recovery in the United States,”Journal of the American Medical Association,November 23/30, 1994, Vol. 272, No. 20, pp.1607-1613. T

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Hundreds of living organ donors in theDelaware Valley celebrated Valentine’s Dayon February 13th at a luncheon at theAdam’s Mark Hotel. “The Celebration of Life”honored Delaware Valley residents who havegiven the gift of life by becoming living organdonors. Over 300 organ donors, recipients,transplant professionals and guests gatheredfor lunch and a presentation by keynotespeaker Kenneth P. Moritsugu, MD, U.S.deputy surgeon general. As part of theprogram, Mayor Ed Rendell also spoke,stating that February 13, 1999, was a day torecognize the heroic act of living donors.

Living donors received certificates ofappreciation and Gift of Life pins. The event,organized by a committee of non-profitorganizations and transplant facilities, waschaired by Shuin-Lin Yang, MD. Dr. Yangsaid, “In my 20 years as a transplantsurgeon, I’ve witnessed some amazingadvances in medical technology, but nothingis more awe-inspiring, more worthy ofaccolades or more humbling than the livingorgan donors. They are the true heroes ofmany transplant stories.” T

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More than Just a V❤lentine

Increasing Organ Donationcontinued from page 16


n preparing to write this article, I spoke withmany transplant recipients, people waiting for atransplant, friends and family members abouttheir thoughts and experiences. I discoveredthere are several points of common groundsurrounding the “transplant experience.”

The first common point is the range ofemotions that many of us feel. Most peopleagreed that their transplant was one of the most,if not the most, “emotional roller coaster” eventsof their lives. People who had received more thanone transplant over time stated that even thoughthey knew most of what was happening by thesecond or third time around, the emotions werestill marked by extreme highs and lows. And notall of these feelings were experienced before thetransplant. Many did not surface until well intoor after the recovery period.

Common thoughts were about lifeand death, and not only our own,but of the donor and his or herfamily. Many of us wondered aboutthe welfare of family and friends ifwe did not make it, and eventhought that maybe they would bebetter off if we just died. Manypatients with kidney failure whowere stable on dialysis expressed alot of concerns about whether atransplant would be worth the riskof surgery and regimen of immunosuppressivedrugs and side effects that follow. Obviously,those patients who needed a liver, heart or otherorgan, with no replacement therapy available,had different thoughts.

Family members and friends shared many ofthese thoughts from a slightly differentperspective. Many of them were always trying tohelp the person with the illness, with no regardfor the emotional burden they were putting onthemselves. Others found themselves driftingaway from the person, either out of fear or in anattempt to protect themselves from being hurt.

The second common point was related toconcerns about physical well-being and post-transplant capabilities. Many people had beensick for a long period of time. After a successfultransplant, they were hesitant to push

themselves to do any physical activity. Thiswithdrawal can lead to further physicaldebilitation, continued unemployment, and livinglife in a dependent mode. Others seemed to taketheir newly found physical vitality and packeverything they had missed in the pre-transplantyears into a short period of time. This strategycan take a high physical toll as well. It isnecessary to merge these perspectives andembrace one that focuses on balance, pace andmoderation.

The third point of common ground involvedviews on the future. While no one can tell whatis over the horizon, the key seemed to be movingon, “living for the moment” and appreciating theimportant things in life. This attitude must bebalanced by setting and working toward long-

term goals. For some this maymean returning to work, while forothers it may mean giving ofthemselves and their time inunselfish ways for theimprovement of society. We havetaken from the system, family andfriends to get to this point in ourlives, and now we need to learn tobe givers again. Vision, foresightand consideration seem to be thewords that are appropriate in thiseffort.

I’d like to add my own perspective on thetransplant experience. Despite our situation, wecan get out of life what we put into it. We have aunique viewpoint. We have seen life from itshighest and lowest points, something many“healthy” people never do. This presents us witha unique opportunity. Family and friends canplay a big role here, but the ultimateresponsibility for our course in life starts with usas individuals. It can be tough at times, but if wemaintain the right perspective, we can beproductive members of society with atremendous sense of accomplishment and self-worth. If you don’t believe me, come to the nextU.S. Transplant Games. Take the time to meetthe athletes and donor families and hear theirstories of tragedy and triumph. It sure helpedput things in perspective for me. T

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Perspectives—The Transplant Experienceby Maurie Ferriter

Transplant Chronicles, Vol. 7, No.1 19

Between Donor Families & Recipients

y name is Jim Nyilas Jr. My story beginswhen I was diagnosed with juvenile diabetes atthe age of eight. Now I am 33 years old, and Ilook back and wonder how I ever survived aslong as I did. It was hard to live a completelynormal life, always falling behind as I tried tokeep up with my peers, both physically andmentally. I had been told all of my life that I hadan incurable disease, and I always wonderedwhen it would claim my life. This left me with nohope for a solid future. Life just had noparticular meaning for me.

In September 1995, diabetes finally turned onme. Having already lost half of my eyesight, Iwas diagnosed with kidney failure, a commoncomplication of diabetes. I spent six months onperitoneal dialysis, fighting for my life and losingquickly. By May 1996, I was unable to walkmore than a few steps without collapsing. InJune 1996, after being told that I had no timeleft, I realized that I did not want to die. I turnedto God and pleaded for my life. I then received acall from a transplant coordinator at Our Lady ofLourdes Medical Center in Camden, NJ. A donorkidney had been found, and I had the transplantsurgery. While the transplant was a success, Iwas not out of the woods yet. Adjustments hadto be made from time to time, not only inmedications, but in everyday life.

After the transplant, I tried to contact thefamily of my donor following standard protocolset by the procurement center. While filling out aChristmas card, I phoned the center to ask if I

could send a photo to the family. I learned thatthe center was trying to contact me, too, to letme know of my donor family’s desire to meet me.On January 4, 1998, I met with the Ramosfamily at their home in North Jersey. It was thenthat I learned so much about my donor, HelioRamos, a 15-year-old young man who lost hislife as the young victim of gunfire. He lived asthe perfect role model for today’s youth. Helio’sfamily came to America in 1985 from Portugal,just before Helio started kindergarten. He was inthe early years of high school when this tragedystruck. Helio was brought back to Portugalwhere he was laid to rest.

During one of my many visits with the Ramosfamily, I was asked if I would be interested in

being interviewed by the Portuguese communitynewspaper, Luso Americano. I was more thanhappy to do so. I was told that 300,000 readersgot the story. Shortly after, on June 23, 1998, Iwas a guest speaker at what would have beenHelio’s high school graduation. I felt I mustattend to allow Helio to graduate, even if only inspirit. I will never forget the experience whenmore than 2,100 people went from deathly quietto a roaring standing ovation as I introducedHelio’s family, who joined me at the podium thatnight. These are just a few of the many greatexperiences that I have shared with the Ramosfamily. The love shared and expressed by ourfamilies is unmatched!

I am now working on returning to school toget a counseling degree while volunteering as apeer counselor for Atlantic City Medical Center’sdialysis unit. I always look forward to givinghope where I can, especially to those who sufferas I did. I also take every chance I can topromote organ and tissue donation throughvolunteer awareness programs with the CapeAtlantic Transplant Support Group in SouthJersey under the direction of the Delaware ValleyTransplant Program based in Philadelphia.

I have many to thank, and foremost is God fortaking every step of this journey with me. Also, Imust thank my family and the Ramos family, mynephrologist and the dialysis unit staff, thetransplant coordinators, my home nurse andphysical therapists, my church and everyonewho gave me the support to be healthy. T

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Donor and recipient families are united. (L-R) Donor parents Domingos and Helaina Ramos;Dawn, Jim’s sister; Claudio Ramos (Helio’sbrother); recipient Jim Nyilas; and Jim’s mother,Trudy.

The National Kidney Foundation recognizes the significant contributions made by NovartisPharmaceuticals Corporation to transplant recipients around the country through its sponsorship of the

following NKF programs: U.S. Transplant Games 2000; Team USA to the World Transplant Games;Transplant Chronicles; and transAction Council programs.

30 East 33rd StreetNew York, NY 10016

National Kidney Foundation

K i d s orner

Be Positive and Keep aSense of Humor

My name is Sarah Luca and I had akidney transplant four and a half yearsago. I found that the things that got methrough it were a positive attitude and asense of humor. It’s a lot easier to getthrough things being happy rather thanalways looking on the bad side. It’s notalways easy, though, especially whenyou’re on prednisone. Prednisone givespeople mood swings so sometimesinstead of smiling, you just wantto burst into tears. But youshouldn’t worry, because thateventually goes away. Having apositive attitude will help youget well sooner.

It is also important that thepeople around you try to beupbeat and cheerful, too, becauseit will make the whole atmospherebetter. It’s hard not to think about whatmay go wrong, if anything, to not alwaysbe worried and not panic every time youhave a headache. All I can say, though, isit’s a whole lot easier to be happy andtake each day at a time and see what itbrings.

Another thing that you really need tohave when going through a transplant isa sense of humor. Without mine, Iprobably never would have lasted. It’s abit tough, though, because sometimesyou get puffy in the face or hairy, andsome people may make fun of you. If youturn around the insult and make it into ajoke, then you will feel a whole lot

better. For example, one time I wasbabysitting and the little girl said,“Man, your arms are reallyhairy!” I replied, “Yep, that’sright — just like a gorilla that isreal hungry. You had better runbecause I’m going to get you.”And I started chasing her. We

laughed, and it felt good that Icould joke about it.

You also need to remember thatthis is a small price to pay in order tohave a healthy life. So just keep in mind,be positive and keep a sense of humor.

Sarah Luca is 14 years old, fromAttleboro, Massachusetts. She received akidney from her uncle. T

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Sarah Luca

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Transplant Chronicles - National Kidney Foundation4 Transplant Chronicles, Vol. 7, No. 1 rowth delay...

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