Transplant Chronicles

Volume 4 A publication for transplant recipients of all organs and their families, Number 4 published by the National Kidney Foundation, Inc. Giving Back to the Cause After Receiving the Gift of Enlightened Life by James Redford

R ecently, I was chatting with good moments. Things of beauty a good friend of mine who works in hold particular sway. The the transplantation field. importance of family and relationships moves to the fore. “You people are amazing,” he Transplantation is more than the said. “Do-gooders would be putting gift of life—it is the gift of an it lightly.” enlightened life. Exactly what people was he But it doesn’t come easily. For referring to? Transplant recipients. me, there were many years of pain He is continually impressed by how and uncertainty. Like many people much we seem to give back to the with primary sclerosing cause. cholangitis (a type of liver disease), But there is something he and I was well-aware of my need for a other professionals cannot fully liver transplant long before it was understand. This activism that is medically necessary. Those were hard times. I alternated between so common among transplant James Redford and his recipients is not a matter of denial and fear. As I grew more ill, I daughter, Lena, possibly a developed an understanding that discipline or morality. When you third-generation filmmaker owe your life to the good of others, transplantation works. it’s simply empowering. You realize firsthand the And Lord, does it ever work. After a difficult good that can come from selfless choices such as stretch (complications that required the need for organ donation. Getting involved with the organ two liver transplants), I reached a level of activity donation cause feels instinctive. Recipients will that I never dreamed I could. My friends jokingly confirm this over and over again. tell me that I seem to be getting younger while We know the power of life; we have a lust for it. they are getting older. As clichéd as it sounds, I do feel that I’m having a “love affair” with life. Even bad days have their Continued on page 4

Transplant Chronicles is a transAction Program of the National Kidney Foundation, Inc., supported by Sandoz Transplant, a division of Novartis Pharmaceuticals Corporation Partners in Transplant Health

National Kidney Foundation editor's desk ✍ Transplant Chronicles H appy New Year to you all! Transplant Chronicles is published by National Kidney Foundation, Inc. Three months into 1997, I hope all of Opinions expressed in this publication do not necessarily represent the position of the National Kidney Foundation, Inc. you are sticking to your New Year’s Editor-in-Chief: resolutions. This Beverly Kirkpatrick, LSW Philadelphia, Pennsylvania year, as with every year, Transplant Editors: Chronicles promises Ira D. Davis, MD Vanessa Underwood, BS, Cleveland, Ohio AFAA, ACE to bring you the Plaistow, New Hampshire Maurie Ferriter, BS most informative Lakeland, Michigan Jim Warren, MS Arlington, Virginia updated news in Cheryl Jacobs, LICSW the world of Beverly Kirkpatrick Minneapolis, Minnesota Laurel Williams, RN, MSN Omaha, Nebraska transplantation. Linda W. Moore, RD, LDN Memphis, Tennessee R. Patrick Wood, MD This issue includes the first of a five-part series on Houston, Texas Teresa Shafer, RN, vocational rehabilitation, which plays a significant MSN, CPTC role in patients’ lives post-transplantation. Ft. Worth, Texas Editorial Office: As always, we ask you to send us stories or National Kidney Foundation, Inc. 30 E. 33rd Street, New York, NY 10016 suggest topics that you would like to see covered (800) 622-9010/(212) 889-2210 T http://www.kidney.org in the newsletter. Don’t forget, we love pictures. C Executive Editor: Editorial Director: Beverly Kirkpatrick Diane Goetz Gigi Politoski for the Editorial Board Managing Editor: Editorial Manager: Sara Kosowsky Gary Green Design Director: Production Manager: Oumaya Abi-Saab Torey Marcus

To David for His Gesture of Love by Steven A gesture of love . . . With God and myself, may my thinking be under control. To my brother, whom I love so much, Though you’re always busy, you never get out of The Bible says that “God gives not the spirit of touch. fear Balanced is your life, filled with love and caring, But of a sound mind,” let’s hope for a cure. An example to follow, with kindness and sharing. Continue to value the simple things in life, Like Aunt Pat, Grandma and Jeff—leading the Now that I have your kidney that keeps me going way to that ever-loving Light. A sacrifice of love, that’s what you’re showing. A change in my life, a positive gesture, May your life and Sarah’s be filled with joy. I’ll never take it lightly, I’ll be thankful forever. And in your children, whether they be girl or boy. Time is so short, so grab hold of each day. You saved my life, I was gradually dying, You’re in my thoughts continually, nothing but No self-esteem, continually sighing. blessings for you I pray! New life is mine, I feel better than ever. Take you for granted, never! God bless you, for your thoughtfulness,

I’ll always take care of this organ for sure, T Your brother, Steven C Because in my mind, this organ is pure. Please keep praying for me that I might be whole,

2 Transplant Chronicles, Vol. 4, No. 4 Pre-Employment Enquiry Guide

This guide kicks off Transplant Chronicles’ five-part series on vocational rehabilitation. When applying for a job, you should know what every prospective employer may and may not ask you. Please note that the list below represents the federal government’s Equal Employment Opportunity Commission guidelines for what a prospective employer may not ask you before you are hired. State laws may go even further in limiting questions. Some of these questions, such as “person to be notified in an emergency,” may legitimately be asked after you are hired.

NAME: You may not be asked to indicate ARREST AND CONVICTION RECORDS: You whether you use “Mr.,” “Mrs.,” “Ms.” or “Miss” may be asked about convictions if a statement to precede your last name. nearby (on the application) notes that a conviction would not prevent hiring or if MAIDEN NAME: You do not have to answer this convictions relate to requirements of the job. because it may be used by an employer to Another possibility is that your prospective determine marital status, sex and national employer states that he or she intends to make origin. a criminal records check.

SEX: Your prospective employer may ask this HEALTH: Medical questions may not be asked only if one sex is a legally recognized of you. Your prospective employer may not refer qualification for the particular job. to medical or physical exams until an employment offer has been made. Height and MARITAL STATUS AND DEPENDENTS: Many weight questions may be asked after a states have made it illegal to discriminate conditional offer of employment. based on marital status. Also, you do not have to answer questions regarding your WORKERS’ COMPENSATION HISTORY: The spouse’s name and occupation. Americans with Disabilities Act prohibits this type of question. AGE: You may be legally asked if you are 18 years of age or older. Other than that, you may DATES OF SCHOOL ATTENDANCE: This can be asked your age only if there is a legal be asked if your prospective employer shows a business justification for the question. nondiscriminatory, legitimate business reason, such as to assist with reference checks. PLACE OF BIRTH: This cannot be asked because it can be used to determine national PERSON TO BE NOTIFIED IN AN origin. EMERGENCY: Your prospective employer may not ask this RESIDENCE: A question about whether you question because it might suggest marital rent, own or board is prohibited by law. status.

CITIZENSHIP: The Immigration Reform and REFERENCES, FRIENDS AND Control Act of 1986 made citizenship BUSINESS CONTACTS: discrimination illegal. An employer may ask if These may be asked of you only if your you are authorized to work in the U.S. prospective employer contacts them as a matter T of policy. C TYPE OF DISCHARGE FROM THE MILITARY: In some states this is an illegal inquiry.

Transplant Chronicles, Vol. 4, No. 4 3 James Redford getting the word out. All too Continued from page 1 often, the film industry and transAction Council to other media are detrimental to Hold Inaugural Meeting the causes, with inaccurate But before transplantation reporting and a fixation on can work, it has to happen; The NKF’s transAction Council will morbid elements. In the case of unfortunately, as we all know, hold its first open membership the television show, “Chicago it doesn’t always happen. meeting on October 31 and November Hope,” the media can be There are as many reasons for 1, during the NKF’s Annual Meeting simply irresponsible. If you this problem as there are ways in San Antonio, Texas. The meeting didn’t hear, the network aired to combat it. I have joined the will provide excellent educational and an episode in which a man ranks of many other recipients social opportunities for transplant who was declared ready for who are trying to make a recipients and their families and organ donation (brain dead) difference. In my case, it those awaiting transplants and their suddenly regained means using the tools that are families, in addition to donor families. consciousness. available to me—media, Aron Eisenberg, a kidney especially film. My first project, As a professional in the film transplant recipient and actor, who a documentary film, will follow business, this irresponsibility plays the part of Nog on “Star Trek: a year in the life of long-time shames and embarrasses me. I Deep Space Nine,” and Susan and recent transplant patients have a message of great Benner, an NKF spokesperson who, and some who are desperately importance, and I will do what last year, donated one of her kidneys hoping for a transplant. Most I can do to bring this message to a high school classmate who she of the filming has been to people. I know this and so hadn’t seen in more than 30 years, completed. A second, short does my family. My children are scheduled to speak at the inspirational film for teenagers are growing up with a father meeting. is now in preproduction. because of two families who heeded this message. If I The transAction Council was Once I have raised enough manage to reach only one established to ensure that today’s money to complete these family, my work will have been organ transplant recipients receive efforts, I will embark on an worthwhile. the finest possible care. Membership effort to make sure that the is complimentary. For more films are seen in as many James Redford received a information on the council and the places as possible. This will liver transplant three years ago. meeting, contact Gary Green at (800) include doing some publicity— He is the son of director and T 622-9010. C an important element in T actor Robert Redford. C

National Communication The broad philosophy developed by the work group states: (1) Members of donor families and Guidelines Await Approval transplant candidates or recipients have a right It should soon become much easier for donor to receive appropriate information about each families and transplant recipients to other and to engage in mutually acceptable forms communicate. For more than a year, a work of communication; and (2) Implementation of this group representing the major transplant right shall be facilitated by health care organizations and the Donor Family Council has professionals. developed, reviewed and revised a document that Although the document has been accepted by should help provide guidelines for the members of the work group, it must now be communication issues at the time of donation published and distributed to the respective and transplantation, and later if donor families transplant organizations for an endorsement. and transplant recipients wish to communicate Hopefully, the distribution will begin in early with each other. spring. Confidentiality and anonymity are still If you would like a copy of the guidelines or foremost for all those who wish it. However, if it would like to assist in the distribution, please is mutually acceptable to both the recipient and contact Kathleen Casey at the National Kidney donor family, additional information, including Foundation, at (800) 622-9010. T names and addresses, may be forwarded. C

4 Transplant Chronicles, Vol. 4, No. 4 Keep Yourself Covered: What Everyone Should Know About Health Insurance and Transplantation by Cheryl Jacobs, LICSW

N o matter when you had a transplant and companies because of illness or a pre-existing regardless of your income or type of insurance, condition. Contact the National Insurance most of you will require ongoing care and anti- Consumer Help Line at (800) 942-4242, to get rejection medications. Staying informed about the phone number of your state insurance your health coverage and the programs and commissioner’s office, so you can find out if assistance that are available is important. Medigap or high-risk insurance policies are available where you live. To learn about your health coverage options, talk to your social worker or financial counselor. Medicaid (medical assistance): You may Every transplant center has someone designated qualify financially for Medicaid, a medical to assist you; this individual can inform you insurance program offered in every state. about programs designed for your type of Medicaid can help with the copayments or transplant, even if you are not a recent recipient. deductibles of Medicare if you are a part of Even with help, transplantation—especially the Medicaid’s Qualified Medicare Beneficiary terminology associated with it—can be confusing. Program. You can learn more about your eligibility and benefits by contacting your Here are some definitions that may be helpful: county’s Department of Human (or Social) Employer insurance: If you or your spouse Services or Social Security. works, chances are your health insurance is Drug programs: Most pharmaceutical covered by your employer. Study your specific companies have assistance programs that coverage options and choose a plan that best provide their drugs at reduced cost to patients meets your needs. If you are part of an HMO, who qualify. Ask your transplant center for the you should know which providers, services and telephone numbers or how to apply for these pharmacies you can use to receive full or partial programs. coverage. If you or your spouse stops working, you may want to continue coverage for up to 18 Transplant Foundation: Another source of months. (This continuation is known as COBRA, assistance with anti-rejection drugs, for those or the Consolidated Omnibus Budget who qualify financially, is the Transplant Reconciliation Act, and should be discussed with Foundation. To receive an application, call (800) your employer prior to leaving.) 489-3863. Medicare (Parts A and B): You may be eligible Your social worker may be aware of other for Medicare if you: are 65 or older; have been local, state or national programs that are receiving Social Security disability for at least available to you. The cost of a transplant is high, two years; or have undergone a kidney but there are places to turn for assistance. You transplant or chronic dialysis. Part B of Medicare should never have to compromise your health will cover 80 percent of the immunosuppressive care because of a lack of coverage. If your drug costs for three years following a transplant. insurance provider denies you a service, inquire Some states have Medicare HMO plans that about the process to appeal the decision, and cover up to 100 percent of the medication costs ask your doctor to assist you with the appeal. for those three years. Contact Social Security at Some of you, with the help of transplant- (800) 772-1213, or Medicare at (800) 638-6833, related groups and state legislators, are to obtain more information. addressing the financial cost of transplantation Medigap: Some states offer insurance coverage and changing coverage policies as a result. As that supplements Medicare. Medigap may cover insurance coverage and managed health care the remaining costs of approved Medicare continue to define services and care for all of us, services. it is important that the insurance providers understand what transplant recipients require to High-risk insurance: Some states offer maintain a healthy lifestyle. T insurance coverage to those who have been C denied coverage by other health insurance

Transplant Chronicles, Vol. 4, No. 4 5 Tissue Donation: The Unsung Story by Teresa Shafer, RN, MSN, CPTC

never run again, but that’s okay,” she says. “I Donated corneas, bone, muscle, skin, heart didn’t run before my surgery.” Now 20, Denise is valves and other tissues help an estimated back in school. Dr. Yu carefully monitors her 450,000 or more Americans every year. progress, and reports that the bone graft has A bright young woman preparing for college, been fully incorporated to Denise’s own bone—an Denise Rozboril of Fullerton, California, didn’t pay outcome that constitutes a cure. much attention to the bump on her leg. It was Not long ago, Denise’s prognosis might have such a minor thing. A year after it first appeared, been radically different. There was a time when Denise finally remembered to mention it to her the majority of patients with bone malignancies doctor. X-rays showed a mass on the bone, and faced amputation of their limbs. Today, an though there was no sense of urgency, Denise estimated 80 percent of these patients keep their was sent to an orthopedist. Further testing limbs, thanks to increasingly sophisticated bone revealed a hole in the bone, and Denise was and tissue transplant techniques. referred once again, this time to Leisure Yu, MD, PhD, associate professor of orthopedic surgery at An estimated 450,000 Americans receive tissue Loma Linda University Hospital. transplants each year, ranging from sight-saving corneas and hip Denise was then a replacements to bone student at Oklahoma State repairs and heart valves. University, planning her “When a celebrity The availability of donated career in nursing. The news bone, tendon and that the tumor must be receives an organ ligament tissue for biopsied was terrifying. “It transplantation has hit me hard,” Denise transplant, it is headline revolutionized the practice remembers. “I never of sports medicine, thought it could happen to news. When an equally thereby extending the me.” The results of the playing careers of athletes biopsy showed a localized, popular public figure from sandlots to aggressive adamantinoma— stadiums. a malignant tumor that generally does not spread. receives a tissue The average American Before the biopsy, Denise can be forgiven for not was warned that she might transplant, little knowing about the awake from surgery to find benefits of tissue herself on chemotherapy, attention is paid.” transplantation. Although but with his diagnosis 25 tissue transplants are confirmed, Dr. Yu chose to performed for every organ remove the affected bone transplant, the lion’s and muscle surgically and reconstruct the area share of attention has been garnered by the using a donated bone and tissue graft. This drama of organ transplantation. When a celebrity procedure, called a segmental resection of the receives an organ transplant, it is headline news. tibia, allowed Dr. Yu to replace Denise’s damaged When an equally popular public figure receives a bone with healthy shinbone recovered from a tissue transplant, little attention is paid. Patients donor. and their families may not even realize that donated tissue made their recoveries possible. Recovery was slow, as the graft was given every chance to heal. Denise was kept completely off With the exception of blood and bone marrow, her leg for three months and only allowed to walk virtually all allograft tissue (an allograft is a without crutches after five months. The surgery transplant from one individual to another) is took place in April 1995, and Denise wore a leg donated after death. As with organs, the need for brace until December. In another year, she will be donated tissue is growing at a much faster rate back to her normal activity. “Dr. Yu tells me I can than donation. In part, this supply-and-demand

6 Transplant Chronicles, Vol. 4, No. 4 problem is due to rapid advances in the science ventilation are available to keep the organs and practice of transplant medicine and the viable. Tissue donation, however, can occur in a increase in medical applications for tissue. much wider range of circumstances. Population shifts also contribute to demand, Transplantable tissue does not require a blood especially among the maturing baby boomer supply, so brain death and artificial support are generation and their parents, who are living not essential criteria (although organ donors can longer and healthier than their predecessors. donate tissues as well). This means that Rad Haley of Houlka, Mississippi, will celebrate individuals who die of heart failure or who die his 80th birthday soon. “Right now,” says his away from a hospital can be tissue donors. Even daughter, Shelby Fowler, of Antioch, Tennessee, when an autopsy is required, as for homicides “Dad is twiddling his thumbs and waiting for the and some accident victims, tissue donation is a day he can plow the garden.” A lifelong farmer, realistic possibility. Because tissue can be Rad still keeps his farm going with his own labor. donated under a variety of conditions, the “He has repaired the roof, put up new siding, and potential pool of tissue donors is significantly the last time we visited he was re-doing the larger than for organ donors. plumbing,” Shelby says. What makes his pace Another important distinction between tissue even more remarkable is that Rad has undergone and organ donation is that most tissue, after it is hip replacement and two spinal fusion surgeries. processed, can be stored for later use. Organs, on His first neck surgery, using his own bone, didn’t the other hand, must normally be transplanted work, so donated bone was employed in a second within 48 hours of donation. Donated tissues are and successful fusion. subjected to rigorous testing and processing The availability of donated tissue helps procedures before they are made available to Americans of all ages to recover from a growing transplant surgeons by bone banks, eye banks list of debilitating conditions. Viewers of “The and skin banks. For tissues, there is no single Montel Williams Show” last year saw an national waiting list comparable to that of the emotional meeting between Tom and Becky United Network for Organ Sharing (UNOS), the Sander of Adelanto, California, and four-year-old nonprofit body contracted by the federal Beatriz Garcia. The Sanders recounted the death government to manage the matching and of their 14-year-old daughter, Annette. The family allocation of organs. The nation’s tissue banks had agreed to donate Annette’s corneas and a are, however, regulated by the Federal Food and heart valve, and on national television, they were Drug Administration. introduced to young Beatriz. Born with double The value of tissue donation is that it can cataracts and glaucoma in both eyes, the little affect so many lives. A single tissue donor, girl had undergone a long series of surgeries, depending on the extent of the donation, can culminating with the transplant of one of the provide tissue for as many as 50 people. From corneas donated by Annette Sander. For the first the child with the congenital heart-valve defect to time in her life, Beatriz could see. The Sander the cancer victim facing the loss of a limb, from and Garcia families have since become close, and the promising athlete with a potentially career- they all look forward to Beatriz’s second cornea ending injury to the older citizen with crippling transplant later this year. For Tom and Becky arthritis, from the burn patient to the visually Sander, now active supporters of donation, impaired patient, the gift of just one tissue donor meeting Beatriz Garcia gave special meaning to holds the promise of faster healing, improved their tragic loss: “It was like a part of Annette function, restored mobility and the return to was still alive,” they said. healthy and productive living. The Sanders were, in a sense, fortunate to For people like Denise Rozboril, Rad Haley, have the opportunity to donate for their daughter. little Beatriz Garcia and the hundreds of Too many Americans, including medical thousands more whose lives have been and will professionals, know little or nothing about tissue be changed by the gift of tissue donation, it’s time donation and the donation process. For example, for the story to be told. the donation of solid organs—heart, lung, kidney, pancreas and liver—can occur only when a The preceding article was adapted with patient is declared brain dead and dies in a permission from the Musculoskeletal Transplant T hospital where mechanical support and Foundation. C

Transplant Chronicles, Vol. 4, No. 4 7 NKF Testifies Before Congress Regarding Organ Donations

In a statement presented December 11, 1996, before the U.S. Department of Health and Human Services, NKF Immediate Past Chairman, Bruce Bowden, focused on the need for new thinking in the national approach to increasing available organs for transplantation. According to Bowden, “If we could enhance the overall availability of organs, we might not have to face the difficult life-and-death choices which permeate the development of liver allocation policy.” On behalf of the NKF, Bowden proposed increasing organ donations through the following measures: • removing financial disincentives experienced by living related donors (Bowden claimed, “The superior graft survival rates with living related donation would justify any additional expenditure.”); • permitting a test of the efficacy of financial incentives for cadaveric organ donation (Payment would be limited to funeral or burial expenses.); and A. BRUCE BOWDEN • extending Medicare coverage for anti-rejection drugs for the life of the transplant, not merely 36 months post-transplant, to cut down the need for second and third transplants. Nearly 50,000 Americans are currently awaiting life-saving transplants. Nine to ten die each day while waiting. The National Donor Family Council also testified at the hearing. For a brief T summary, see page 10. C

Reduced Gravity, Tang and Organ Donation Cards Thank You, Sponsors 1997 U.S. Winter Transplant Games January 29 - February 1, 1997 Mammoth Lakes, California The National Kidney Foundation thanks the following corporations for their generous support of the 1997 U.S. Winter Transplant Games. Without their involvement, this inspiring event would not have been possible. Principal Sponsor Roche Laboratories, Inc. photo courtesy of NASA Major Sponsor On December 2, crew members of the STS- Fujisawa USA, Inc. 80 Columbia shuttle mission took time out Event Sponsors to sign donor cards while in orbit on the Giant Slalom: Wyeth-Ayerst Laboratories space shuttle. In this photo, taken directly Parallel Slalom: SmithKline Beecham from the video, Tom Jones, of Baltimore, Maryland, is signing a donor card. At Tom’s Contributing Sponsors left is Tammy Jernigan, of Chattanooga, Cellular One of Bishop • Kenyon Consumer Tennessee, and behind Tom is Story Products • PowerBar • The Mammoth Times • The Musgrave. In addition to this event, NASA National Kidney Foundation of Northern California is distributing organ donor cards to visitors • The National Kidney Foundation of Southern at its facilities across the nation. For more California • Sandy’s Ski and Sports Shop details see the story on page 10. 8 Transplant Chronicles, Vol. 4, No. 4 Transplant News Digest

From the editors of Transplant News Marathon Public Hearing on Liver Allocation Raises More Questions Than it Answers; UNOS Modifies Policy by Jim Warren, editor and publisher

When the Department of Health and Human hearings, as well as the written and other public Services (HHS) announced that more than 100 comment we have received, in preparing to people had requested time to testify at its public submit a final rule to OMB [Office of Management hearing on liver allocation and organ donation, it and Budget].” Upon announcing the hearing, HHS became obvious that this would not be a normal Secretary Donna Shalala implied that regulations government inquisition. would be announced within three months of the hearing. The stated purpose of the three-day hearing, held December 10-12 in Bethesda, Maryland, was James Burdick, MD, UNOS president, to see if a consensus could be reached on what announced in his opening testimony that the the liver allocation policies in the U.S. should be Executive Committee approved a modification of and who should set them. After 21 hours of the newly adopted liver allocation policy, designed tantalizing, thoughtful, passionate, redundant to ensure that patients with chronic liver disease and ultimately numbing testimony by 20 panels, continue to have a “safety net” should their the basic questions remain: condition deteriorate. (The new policy, which redefined Status 1 to include only patients • Should liver allocation policy be mandated by suffering from acute liver failure, with chronic federal regulations issued by HHS or by the patients relegated to Status 2, caused a minor United Network for Organ Sharing (UNOS), with uproar in the transplant community.) HHS providing oversight? • Under the new UNOS policy of transplanting The change included adding a grandfather the sickest patients first, should livers be clause in the new policy, allowing Status 1 and 2 allocated first on a local basis or should the organ patients who were hospitalized when the new go to the sickest patients on a national waiting policy was implemented on January 20 to remain list? eligible for an emergency status upgrade to be transplanted. • Is an individual’s or a family’s decision to donate influenced by whether the organ is The three-day hearing was marked by fractious transplanted locally or goes to the patient most in testimony over how the system should work. need of the organ, regardless of location? Most physicians supported having UNOS administer the Organ Procurement and • Finally, is the debate being fueled by honest Transplantation Network (OPTN) and urged the differences of opinion over what the fairest liver government not to issue allocation regulations, allocation policy is or by the economic difficulties i.e., to maintain UNOS’ voluntary regulations with of the transplant system, caused by the ever- HHS oversight. Most patients urged HHS to issue growing donor shortage, which pits large centers strict regulations designed to protect their against small centers? interests. In his opening statement, Philip Lee, MD, chair The largest liver transplant centers called for of the hearing’s panel and the assistant secretary HHS regulation and the development of a single for health at HHS, said the hearing had been national waiting list or at least a “super-regional convened as part of the efforts by HHS “to assess sharing list”; while smaller centers supported the the issues associated with assuring the most current system. (Some of the large centers effective, efficient and equitable policies for include: University of Pittsburgh Medical Center; patients awaiting transplants. . . . The University of Nebraska Medical Center; Baylor department will review the results of these University Medical Center; UCLA Medical Center;

Transplant Chronicles, Vol. 4, No. 4 9 University of California, San Francisco; and Mt. and Tom Jones, of Baltimore, Maryland, crew Sinai Medical Center in New York.) members of the STS-80 Columbia shuttle mission, were given the idea by Anne Conforti, a nurse at The debate over the importance of local donation TransLife/Florida in Orlando. “I’ve seen many versus national donation in a family’s decision to shuttle lift-offs in Florida, and it occurred to me donate provides an interesting example of the that my patients could be helped if NASA took divisions in perception and insight into the small awareness to new heights,” Conforti said. center-large center struggle. Health and Human Services Secretary Donna Here are two different viewpoints that represent Shalala said the astronauts’ action made “all most of the pro-con testimony delivered: Americans proud.” J. Steve Bynon, MD, director, Liver Transplant “In the hearts and minds of their fellow human Program, University of Alabama at Birmingham: beings, they’ve once again taken a giant step for “Although there is no ‘hard’ data to suggest that mankind,” Shalala said. local utilization of organs increases procurement, it is the general consensus by both transplant “I’m proud NASA was able to feature this life- physicians and organ procurement personnel in saving program,” said Daniel Goldin, NASA our region that it does promote donations. Imagine administrator. “When Tammy and Tom signed the effect of a [local] transplant recipient telling his their donor cards more than a hundred miles or her story to those health care providers working above the Earth, it highlighted the critical need for in the ICU that provided the liver that made the organ donations, and made it clear that the work recipient’s [new] life possible. Can anyone think of we do in space benefits life on Earth.” a more powerful way to put a positive outlook on an unfortunate tragedy and increase the NASA officials have endorsed a variety of confidence and ability of persons to ask for collateral public service activities over the years. consent? This is the foundation strong OPOs This year, organ and tissue donor cards are being [organ procurement organizations] are built upon.” distributed to visitors at NASA facilities across the nation. Vicky Crosier, donor mother, member of the NKF’s National Donor Family Council: “The gift we Photographs and a video of the signing by the give takes self-sacrifice and can be a difficult astronauts are available free of charge to the decision at such a stressful time. Because of this, transplant community. Contact Eileen Hawley at we hope that once we agree to donate, the organ the NASA news desk, Johnson Space Center, at has the best possible chances for survival and the (281) 483-5111. Or, call Kathy Driscoll, TransLife decision to whom the organ goes is not based on public relations manager, at (407) 897-5560. politics, greed or chance, but that it goes to those who will most benefit. CDC Issues Relax HIV Screening Guidelines Slightly “A popular opinion,” Crosier continued, “is that one reason we agree to donate is the desire for the The Centers for Disease Control and Prevention organs and tissues to stay in our community. We (CDC) have slightly relaxed the screening are credited with supporting ‘local primacy.’ guidelines for testing potential organ donors for However, this hypothesis has never been validated the human immunodeficiency virus (HIV). by asking those most intimately involved—donor Responding to criticism from the organ families. The National Donor Family Council hopes procurement and transplantation community that more research can be done to either substantiate guidelines for screening organ donors for HIV were or refute this theory.” strict and impractical, the CDC issued the clarification of the guidelines, originally published Astronauts Sign Organ Donor Cards While in 1994, in the November 1 edition of the Federal Orbiting in Space Shuttle Register.

In one of the highest profile events conducted to “Reports from the organ procurement and promote organ donation, two astronauts received transplantation community have indicated that, in international attention on December 2 when they attempts to ensure the highest level of safety, the signed organ donor cards while orbiting in the guidelines have been interpreted in a way which space shuttle (see photo on page eight). has further compromised the already limited supply of human organs,” the CDC observed in Tammy Jernigan, of Chattanooga, Tennessee, the notice. 10 Transplant Chronicles, Vol. 4, No. 4 The 1994 guidelines required that potential Hospitals’ Role Main Focus of Kennedy/ donors who test negative for HIV, but have “one or Moakley Hearing on Organ Donation more behavioral exclusionary criteria may be accepted as donors if . . . the risk to the recipient Many hospitals not only fail to produce of not performing the transplant is deemed to be sufficient numbers of organ and tissue donors, greater than the risk of HIV transmission and they often do not even approach potential donors disease (e.g., emergent, life-threatening illness and their families in the first place, members of a requiring transplantation when no other organs/ congressional field hearing were told September tissues are available and no other life-saving 30 at Harvard Medical School in Cambridge. therapies exist). In such a case, informed consent regarding the possibility of HIV transmission The two-hour hearing on organ and tissue should be obtained from the recipient.” donation in Massachusetts, presented by Sen. Edward Kennedy (D-MA) and Rep. Joe Moakley The new guidelines address the use of organs (D-MA), produced a variety of testimony that from potential donors who test HIV-antibody focused mainly on the hospital’s role, or lack negative, but have behavioral risk factors for the thereof, in the donation process. virus. The guidelines also make it clear that the transplant center, not the OPO, is responsible for “One-third of the families in hospitals are not obtaining patient consent to accept an organ from even offered the option to donate,” Moakley a such a donor. The CDC emphasized that the observed in his opening statement. guidelines apply only to organ donors and do not Although Kennedy was unable to attend his change guidelines required for screening tissue, own hearing because he had to remain in blood and other donors. Washington for a vote on the U.S. budget, the The CDC’s new guidelines read, in part, “The event attracted a full house. Moakley, who decision to accept an organ for transplantation received a life-saving liver transplant in July should be made after consideration of the relevant 1995, conducted the hearing. He told participants risk factors for the individual recipient and with he was “feeling great,” and there is no trace of recognition of the very low incidence of HIV rejection. transmission in such situations. Representing the Harvard School of Public “In accepting an organ for transplantation, Health (HSPH), one of the hearing’s hosts, Lisa transplant teams should assess immediately the Berkman, PhD, said she views the shortage of medical and social information from the organ organs as “an important public health problem” procurement organization regarding the potential that can be solved “in a realistic time frame” by donor. In the context of the current organ using the tools of public health. Berkman is a shortage, transplant teams are encouraged to professor of health and social behavior and accept and transplant organs from medically epidemiology, and chair of the Department of appropriate donors who test HIV-antibody Health and Social Behavior at the HSPH. negative but have behavioral risk criteria for HIV Sheila McIntyre was among the eight infections, after the transplant teams have individuals who presented oral and written discussed the risks and benefits with potential testimony. McIntyre, who donated the organs and recipients and/or their families,” the notice said. tissues of her husband, said she was not The CDC also pointed out that, as in the approached by the hospital and believes she original 1994 guidelines, organ transplant “would not have been asked to consider recipients should be tested for HIV infections donation.” three months after receiving their transplants. Although federal and state legislation mandates For further information contact Martha Rogers, that hospitals ask family members about MD, Division of HIV/AIDS Prevention, CDC, donation, McIntyre testified, “If the physician Mailstop E-45, 1600 Clifton Rd., Atlanta, GA feels that the next of kin ‘can’t handle it’ 30333. She can be reached by phone at (404) [emotionally], the request need not be made. I 639-6130. believe very strongly that the hospital personnel do not have the right to make that decision for the family. The loss is so great—nothing can make it worse. . . . For whatever reason, should

Transplant Chronicles, Vol. 4, No. 4 11 the family decline, that’s OK, but no one should Fiske gained national attention in 1982 when be denied that source of comfort.” he went directly to the American public in what ultimately was a successful attempt to get a liver Steven Gortmaker, PhD, a senior lecturer in transplant for his nine-month-old daughter, HSPH’s Department of Health and Social Jamie. The resulting publicity is widely cited as Behavior, testified that the key to increasing one of the key elements in persuading Congress donors lies within the working relationship to establish the current national transplant between the hospital and OPOs. Gortmaker said, system. “. . . rates of asking eligible families can improve dramatically . . . when OPOs perform medical Fiske said Jamie, who is now 14 years old and record reviews in large hospitals using a validated a freshman in high school, is a “prime example methodology, inform the hospitals of the findings that transplantation works.” and provide education on current donor criteria and referral procedures.” “On behalf of all patients and their families,” he concluded, “I urge you to continue to demand When such procedures were followed in a that the organ transplant system be fair and study done from 1990-1992, “. . . rates of asking equitable for all citizens.” eligible families to donate increased from 69 percent to 83 percent,” Gortmaker said. “By Children’s Bell Tower Unveiled instituting ‘best demonstrated practices’ for the organ donation request [i.e., when, where and by The Children’s Bell Tower, a unique monument whom donation is offered], we estimate that the created by San Francisco sculptor Bruce Hasson number of organ donors could increase by 5,000 in memory of Nicholas Green, was unveiled on per year, making transplants available to an October 26 at Bodega Bay, California. additional 16,000 patients per year.” Nicholas became a worldwide hero two years Carol Beasley, managing director of the ago when he was killed by bandits in Italy and Partnership, echoed Gortmaker’s remarks: “Our his parents, Reg and Maggie Green, donated his research . . . shows that families who had a more organs. Seven Italians ultimately received life- satisfactory experience in the hospital are more saving organs from Nicholas (Transplant News, likely to donate,” she said. “Similarly, families October 14, 1994). The monument has been in that understand that brain death is really death the planning stages for a year and is dedicated to are far more likely to donate than families who children everywhere, Reg Green said during the are confused about this. These factors are almost dedication. completely under the control of the hospital staff, not the OPO.” “We’ve tried to create a place of pilgrimage, a place where any parent can come for solace or Charles Fiske, an outspoken critic of the inspiration, a place that reminds us of the present national transplant system, targeted fragility and preciousness of young life, where much of the blame for the public’s refusal to mothers and fathers will want to put their arms donate on the fairness issue, real or perceived. around their children or hold each other’s “When the public feels the system is fair, hands,” Green said. opportunities and attitudes toward donation can be affected,” Fiske testified. “Any efforts to The monument, which consists of 120 bells increase organ donations must be attentive to donated by Italian individuals, schools and whether the current system is perceived as fair, corporations, is 18 feet high. The centerpiece is a regardless of residence, race or economics. majestic bell donated by the Marinelli foundry, Though “full disclosure of the facts may cause which has been making bells for the papacy for some anxiety to patients,” he added, such more than 1,000 years. The bell has been blessed knowledge may at the same time “encourage by Pope John Paul II. The sculpture contains the potential donor families that their participation is name of Nicholas and the seven recipients, and is the only solution to a regional and national located on the west side of Highway 1 at the end problem.” T of Bodega Bay. C

12 Transplant Chronicles, Vol. 4, No. 4 Medical Beat Liver Cell Transplantation by R. Patrick Wood, MD, FACS

L iver transplantation, destroying the infused cells, which must function using whole or partial permanently. organs, has become a very The results have been mixed, but it appears successful procedure, saving that this technique may be useful in treating acute thousands of lives each liver failure. Patients who develop an organ system year. It has also created a failure as a result of chronic liver insufficiency demand for donor organs that may also be helped by this technique. These far exceeds the supply. patients could be treated with a liver-cell infusion More than 7,200 R. Patrick Wood as support until their liver can recover somewhat people are awaiting liver or a suitable donor liver is found. transplants, and last year, fewer than 4,000 liver The other type of liver-cell transplant will be transplants were performed. During the past four geared toward children with metabolic liver years, at least 800 people have died waiting for a diseases, after the technique graduates from the liver transplant. Any procedure that would allow lab to the operating room. These children are more patients to receive transplants would benefit commonly missing a specific enzyme or protein those who are waiting. Fortunately, medical that can often be linked to an abnormality in a science is responding with innovative techniques specific gene. If the missing gene can be implanted that make use of individual liver cells. into the child’s liver cells, then the liver disease Most patients who have chronic liver disease can be cured without the need for a whole-organ require the removal of the damaged liver and the transplant. With this procedure, the left lobe of the replacement of a new liver. However, it is possible patient’s liver is removed and taken to a lab where to supply those who have acute liver failure and sample liver cells are gathered. Using genetic children who have a metabolic liver disease with engineering techniques, the missing genes are liver cells rather than a whole-liver transplant. spliced into the cells, which are infused back into the remaining portion of the liver. The advantage Two liver-cell transplantation techniques have is that the cells are the patient’s own, and there is been performed successfully in the lab and in a no need for anti-rejection medication. small number of patients. One involves procuring liver cells from cadaveric livers that are not While this procedure has been performed suitable for transplantation, or using parts of the successfully in labs, there has been only one liver that are not used when only a segment of clinical case, which involved a child with a form the liver is transplanted. With this technique, of metabolic liver disease. The results were liver cells can be produced and frozen indefinitely. promising, but didn’t result in a cure. Some issues Eventually, a bank can be developed that will still need to be addressed, such as the number of encompass all blood groups and provide enough liver cells that must be genetically altered to liver cells for multiple infusions into a single provide adequate liver function; and whether these patient. In animals, liver cells have been infused cells will function indefinitely. either directly into the liver through the portal Due to the severe shortage of available donor vein or into the spleen. livers, the techniques of liver-cell transplantation For patients with acute liver failure, liver cells must be considered. For patients with normal can be used for support until the patient’s liver livers—with the exception of a missing enzyme or recovers or a cadaveric donor liver can be located. protein—the genetic manipulation of the cells or For patients with a metabolic liver disease, liver the infusion of a cadaveric donor’s liver cells are cells can potentially cure the disease by supplying both possible treatments. For patients with acute missing enzymes or proteins. Because these liver liver failure or liver insufficiency from chronic liver cells are from unrelated donors, recipients require disease, the use of cells procured from cadaveric T anti-rejection medicines to prevent the body from donors is a possible treatment. C

Transplant Chronicles, Vol. 4, No. 4 13 keeping fit A Cool Workout by Vanessa Underwood, BS, AFAA, ACE

muscles propel you, which is why lower body iding under a down comforter, donning strength is so essential. The side-to-side H movement that is common in snow and ice flannel PJs, lounging on a comfy couch and exercising the remote control may be the sports makes lateral training important. Balance preferred sport for the winter months, but conditioning will not only improve and enhance perhaps it’s time to take a second look outside. your performance, but you will also look and feel Why not go play in the snow? better. The beauty of winter can enhance your mood The following exercises will strengthen the as well as your fitness level. Remember when quadriceps, hamstrings, buttocks and calves, you spent hours sledding, ice skating, sliding, and can be done at home. throwing snowballs and making snow angels and Alternating Dumbbell Lunge: Stand with forts? My memories of winter are filled with fun your feet hip-width apart and your knees slightly and games. But do bent. Contract your we remember how to abdominal muscles. play? Now, hold a The joy of winter dumbbell by your can be revived side in each hand, through a variety of palm facing inward. sports. Not sure Step as far forward which one is for you? as possible with Take a look at your your left foot, personality; if you bending your left are adventurous, knee, which should then perhaps you be directly above may enjoy a your ankle. Your snowboarding lesson. thigh should be How about downhill parallel to the floor. skiing? (This way you Keep your right leg can get fit and ready fairly straight and for the next NKF lift your right heel, Vanessa and her daughters, Caroline and Katherine, leave the but do not lean Winter Transplant remote control behind and extend their triceps. Games!) If you prefer forward. Push off a more gentle sport and want to enjoy scenery from your left foot to return it to the starting while getting great aerobic workouts, try cross- position. Repeat with your right leg. Do one to country skiing or buckle into a pair of three sets of 10-15 reps on each side. snowshoes and hit the trails. If none of these Half-Squat (with or without weights): Stand sports appeal to you, perhaps you want to stick with your feet hip-width apart, knees relaxed, with ice-skating or set out for a nice brisk walk. pelvis in a neutral position, rib cage lifted, Don’t forego exercise because it’s cold out! Dress abdominal muscles contracted and body weight in layers, wear proper clothing, use safe over your heels. Bend your knees as if you are equipment and go for the cold, er, I mean gold. going to sit in a chair, until your thighs are To enjoy any of these sports you need to get in halfway between parallel and perpendicular to good condition, and if you are in good condition, the floor. Straighten your legs to return to the it is vital that you stay that way throughout the starting position. Do one to three sets of 10-15 winter months and into your future. Each of reps. these winter sports requires lower body strength, Step Up (with or without weights): You can lateral training, stability and balance. Your leg use an aerobic step if you own one, or you

14 Transplant Chronicles, Vol. 4, No. 4 can use the stairs in your house. Face the step lower back pressed into the floor. Place your and hold the hand weights by your side (if you thumbs behind each ear so your fingertips are are using them), palms in. With your abdominal touching but not clasped. Lift your head, neck muscles contracted and chest lifted, step up with and shoulders upward, keeping the elbows wide. your right foot. Then, step down again, right foot When your shoulders clear the floor, rotate your first, then left. Repeat, alternating lead legs. Do torso toward your right knee, leading with your one to three sets of 15-25 reps with each leg. shoulder, not the elbow. Keep both hips on the Add weight according to your fitness level, but floor. Return to the center position and lower. do not exceed 20 pounds per hand. Rest between Repeat, this time rotating to your left. Always lift sets for 30-60 seconds. first before rotating. Do two to three sets of at To strengthen your abdominal, back and hip least 10. Do as many as you can in good form flexor muscles, try the following exercises: and rest when you need it, not when you want it. Slowly build up your strength. Freehand Squat-Jump: Stand with your feet hip-width apart, arms crossed in front of your Remember, these exercises are specifically chest, knees slightly bent and abdominal designed for winter activities. Some of the muscles contracted. Bend your knees to squat exercises are for individuals who are at an until your thighs are parallel to the floor, keeping intermediate or advanced level of fitness. your body weight on your heels. From this Beginners (those of you who have been position, jump as high as you can, keeping your exercising three months or less) should start body as vertical as possible. Try to land in the slowly. same spot you started from, and then If you belong to a gym or have equipment at immediately squat to repeat the entire squat- home, check out the chart below for some very jump combo, smoothly and with control. Do one sport-specific exercises to get you up and ready or two sets of 10 repetitions. Rest for three to for a fit and fun winter. Have a healthy winter five minutes between sets. and enjoy your outdoor activities. Crunch Combo: This exercise is a Editor’s note: Be sure to check with your combination of crunches and rotations. Lie on doctor before beginning any of these activities, the floor with your knees bent, feet flat and and remember to work at your own pace and T fitness level. C C

Vanessa’s Cool Workout

SPORT CARDIO-CONDITIONING SPORT-SPECIFIC STRENGTH Snowshoeing Treadmill on an incline Triceps extension Biceps curl Lat pull-down Heel raises Downhill skiing Step aerobics Leg extension Stationary cycling Leg curl Rowing machine Triceps extension Bent-over barbell row Cross-country skiing Treadmill Lat pull down Cross-country ski machine Triceps extension Leg curl Leg extension Bent-over barbell row Ice-skating Stationary Cycling Bent-over row Rowing Machine Hip abduction Skating Machine

Transplant Chronicles, Vol. 4, No. 4 15 Growth Retardation Affects Kidney and Liver Transplant Recipients by Ira D. Davis, MD

Kidney transplantation, it might be assumed, Growth retardation, or short stature, is a would foster dramatic improvements in growth serious problem in children with chronic renal rates of children with CRF; however, long-term failure (CRF) and liver failure, and creates a follow-up studies demonstrate that although the challenge in post-transplant rehabilitation. rate of growth may increase following kidney According to the North American Pediatric Renal transplantation, it usually does not occur fast Transplant Cooperative Study (NAPRTCS), a enough for children to attain normal adult height. registry of children with CRF requiring According to one study, only 25 percent of transplantation in North America, 98 percent of children transplanted before the age of 15 children were taller than a typical child with CRF attained an adult height above the bottom three of the same age. In another study, almost two- percent of the normal range. A child’s age at the thirds of the children with significant CRF time of transplantation, the amount of prednisone experienced growth retardation. Children prescribed and renal function all contribute to the undergoing chronic dialysis also display lack of significant post-transplant growth. significant growth retardation. Children with According to the NAPRTCS, children who liver failure tend to experience impaired growth receive a transplant before they reach their first as well, but it is not as severe as it is in year showed the greatest improvement in growth children with CRF. Studies show that height during the five-year period following measurements of children with liver failure are transplantation, while children who receive a typically slightly below the transplant between one average for children of the and five years showed same age. “Children with CRF improvement in growth, Children with CRF may may suffer from short but to a lesser extent. suffer from short stature Older children failed to prior to transplantation, stature prior to show significant especially if CRF begins improvement in post- during infancy. Resistance to transplantation, transplant growth rate. growth hormone, a Prednisone is known to substance that is responsible especially if CRF begins have an adverse effect on for normal growth of bone linear growth, but how it and cartilage, may cause during infancy.” does this is not fully short stature. Malnutrition understood. Several also accounts for poor growth in these children strategies have been adopted in an attempt to and can be caused by inadequate caloric and improve post-transplant growth. One approach is protein intake, poor appetite, higher-than-normal to withdraw prednisone after a rejection-free caloric requirements and protein losses on period of six to 12 months following dialysis. Water and electrolyte disturbances, transplantation. Although some children show calcium and phosphorus imbalance and infection significant improvement in growth when can also contribute to growth retardation. prednisone is discontinued, a number of children In children with liver failure, malnutrition is the develop severe kidney rejection, requiring high- primary cause of growth retardation. Malnutrition dose prednisone therapy to continue. occurs because of poor appetite, insufficient Another strategy to improve growth is to taper absorption of nutrients from the intestine, the prednisone to an alternate-day dose of 0.50 decreased production of proteins by the failing milligram/kilogram of body weight in children liver and chronic illness with serious infections. with stable post-transplant renal function. Insufficient vitamin levels for the healthy growth Acceleration in growth rate is commonly seen of bone and cartilage also contribute to the short after one to two years without a detrimental effect stature in children with liver failure. Continued on page 19

16 Transplant Chronicles, Vol. 4, No. 4 Empowering the Health Care Consumer by Maurie Ferriter, BS

discussed at the national and state levels. Under s transplant recipients, we must get such a system, everyone would go through the acquaintedA with important health care terms and same process, with the same services available to the concepts they represent. them, regardless of their disability. Many people believe this would lead to a “survival-of-the- When people have a broken leg or need an fittest” system, with agencies and health care appendix removed, they often act like patients. systems picking the easiest cases to deal with. These conditions are acute, which means they People with severe or time-consuming needs will run a short, but severe, course. After the leg is not have access to services. out of the cast or the appendix is removed, people continue on with their life as if they never had a As transplant recipients, most of us can problem. identify with the need for physical rehabilitation after major surgery. Many of us also know people As transplant recipients or people awaiting a who have needed to change jobs, go back to transplant, our medical condition is chronic, school or receive training. How these issues play meaning we will have to deal with it for the rest of out will have a major impact on our future. If we our lives. We must learn to act like consumers, choose to be passive patients, we are letting not patients with acute conditions. We must others with varied interests decide about an obtain all the information we can about our important part of our future. If we are informed illness so we can make informed decisions about consumers, we at least have had the opportunity our health care. to say we did our best at trying to determine our As transplant recipients with a chronic future with our best interests in mind. condition, we must empower ourselves. There is We do not need to run for office. We can be an old proverb about a parent and child walking active at the local, state and national levels by by a river. The child falls in the river, and the calling or writing our legislators. This is not very parent pulls the child from the water, saving his time-consuming and it can have a big impact. If life. The child then feels indebted to the parent for we empower others to do the same, more voices the rest of his life. If the parent had taught the will be heard. When doctors, nurses and social child to swim early in life, he could have swum to workers speak for us, politicians don’t listen as safety and saved his own life. The child would not much as when we speak for ourselves, especially feel as if he owed his life to his parent, and the when we have strength in numbers. You can also parent would have known that the child was become involved with organizations like the capable of saving his own life if the same thing National Kidney Foundation and its local happened again. This is empowerment. Affiliates. Most have or are developing public We have the ability and the duty to empower policy programs. The same holds true for the ourselves and others who are in the same American Diabetes Association, the American situation as we are. Think of the possibilities that Association of Kidney Patients, the American could open up for us as individuals: the world Lung Association and the American Heart would be full of swimmers! We need to be aware Association, which all have either public policy of what is going on in our health care and what programs or committees. might be ahead of us. We need to become The challenge is to become involved. Then involved in the political process. the bigger challenge is empowering others to State control of Medicaid and Medicare is become involved, so that as many health care substantial. The rise of managed care and access consumers as possible are empowered. to physical, mental, vocational and functional Maurie Ferriter received a cadaveric kidney rehabilitation are also significant. The notion of transplant in 1986. He resides in the “beautiful” one-door access to rehabilitation is being T town of Lakeland, Michigan. C

Transplant Chronicles, Vol. 4, No. 4 17 eating right

Who Needs Calcium Supplements? by Linda W. Moore, RD, LDN

disease will cause these patients to have enlarged Have you been wondering if you need to take or overactive parathyroid glands, as well as bones calcium supplements? You have probably noticed with calcium deficiencies. Many times, a kidney advertisements that claim calcium supplements transplant causes an overactive gland to decrease protect bones. These ads usually target women, in size by providing better phosphate control and especially older women. They mention that by allowing a constant production of vitamin D; women need to take supplements to avoid however, the gland does not always return to developing osteoporosis, which is a bone disease normal size. The bottom line is that the bones are characterized by the loss of bony tissue, resulting weak and something must be done to improve the in brittle bones that are likely to fracture. (The situation. The problem may be compounded by term “osteoporosis” derives from this; “osteo” the fact that the medications required for means “bone,” and “porosis” means “open or transplantation may also cause bones to lose porous spaces.”) calcium. There is still a lot we do not know about how these medications do this or even if the I recently heard a prominent endocrinologist/ medications are the main cause. It may be that epidemiologist (a specialist in both hormone the kidney disorder is the main cause. At any functions and the occurrence of disease in rate, no studies have shown that calcium various populations) say that osteoporosis and replacement is beneficial for transplant recipients. secondary hyperparathyroidism are rapidly increasing in the United States. The doctor added To help prevent osteoporosis, adults need to that some states have developed legislation to watch their calcium intake. Even though adults advertise the seriousness of osteoporosis. are finished growing, bones change cells every day and calcium is lost and replaced, which is Secondary hyperparathyroidism is an known as normal bone turnover. If normal enlargement of the parathyroid gland due bone turnover occurs, but no calcium is to stimulation not caused by the replaced, the thyroid gland will enlarge in dysfunction of the gland itself. Something an attempt to stimulate more bone is signaling the gland to overproduce the turnover because it is not receiving the parathyroid hormone. It is common in right signals. The parathyroid glands also kidney disease patients because the kidney play a role in bone metabolism and can is the source of production of a very become enlarged. important bone hormone, vitamin D, which helps strengthen bones by assisting calcium uptake to Healthy adults need approximately two servings the bone. When kidneys do not produce enough of dairy products each day to provide bones with vitamin D and do not clear phosphorus out of the a daily supply of calcium. Children need three to blood, a false message is sent to the parathyroid four servings of dairy products each day. Many gland. The bones do not receive the calcium they children develop osteoporosis during their pre- need and become weakened and porous. adolescent and teen years because they are not getting enough calcium. Children sometimes Health care providers are constantly think the calories are not worth the taste, or they encouraging individuals with kidney disease to simply prefer the taste of colas or something else. take their phosphate binder to help protect their However, colas are not good substitutes for milk, bones from the bad side effects of kidney disease. and supplements only provide calcium, whereas The phosphate binder often contains calcium to milk provides many minerals and vitamins to offer more protection. Unfortunately, some promote good bone health. patients forget to take this medication, and some find the taste unpleasant. Ultimately, kidney Continued on page 19

18 Transplant Chronicles, Vol. 4, No. 4 National Donor Recognition Who Needs Calcium… Ceremony Scheduled for April Continued from page 18 The Fourth Annual National Donor Recognition As a transplant recipient, whether you Ceremony, sponsored by the Division of are male or female, your needs for calcium Transplantation in collaboration with the National are at least equal to a normal individual’s. Donor Family Council and many other transplant Whether you need more calcium than this organizations, will take place Sunday, April 13, 1997, should be determined by your physician, at the Sheraton Washington Hotel in Washington, D.C. but you should be aware of this disorder This moving ceremony pays tribute to all Americans and talk to your transplant team about it. who donated their organs and tissues to save or They may suggest that you use dairy improve the lives of others. The National Donor products (skim milk) to obtain the calcium Recognition Ceremony features inspirational speakers, you need, or that you might benefit from a a tribute ceremony and the National Donor Family calcium supplement. Quilt. Transplant recipients and candidates and their families are invited to attend this memorable event. You can also help to spread the word about osteoporosis, and help others to An educational and support workshop will be offered improve their bone health. Remember, start to living donors on Saturday, April 12. Following an with dairy products (no fat), then find out if overview of the historical role of living donors in you need more than your diet can provide. transplantation, transplant social workers will lead Always review these issues with your discussions and exercises about the emotional effects health care team (your physician, dietitian of donation. For registration information about the or nurse) before you make changes in your ceremony and the workshop, please call the NKF’s T T diet or medications. C Kathleen Casey at (800) 622-9010. C

Growth Retardation Affects… Continued from page 16 on kidney function. Success with this regimen conditions. Widespread use of this drug in kidney may be greatest among live-donor recipients and transplant recipients has caused concern children treated with the immunosuppressive because there is a risk of causing worsening drug cyclosporine. kidney function. A national collaborative study evaluating the safety and effectiveness of growth Poor function of the transplanted kidney hormone in kidney transplant recipients is may also have a negative impact on growth. presently underway. This problem may be due to recurrent acute rejection, chronic rejection or recurrence of the Linear growth following liver transplantation kidney disease that was present in the child’s appears more favorable compared to growth native kidneys. rates after kidney transplantation. Although linear growth may be diminished during the Due to the discouraging growth rate in initial six to 12 months following transplantation, the majority of children following kidney accelerated growth is seen up to four years transplantation, a number of transplant centers following a liver transplant in over 75 percent of have started using daily injections of children. Limited growth during the initial twelve- recombinant human growth hormone in selected month post-transplant period appears to be children and are reporting inproved growth rates. caused by multiple surgical procedures, Recombinant growth hormone is a synthetic inadequate nutrition and high-dose prednisone substance that is currently approved for the therapy. T treatment of children with chronic kidney failure C and short stature due to various endocrine

Transplant Chronicles, Vol. 4, No. 4 19 Mary Anne Shea 1943-1997 M ary Anne Shea of Sandy, Utah, a friend and inspiration to many, died on January 21 after a short illness.

Mary Anne is survived by her husband, Gerald C. Shea; her daughters, Christianne, Kerry and Suzanne; her son, Keith; her mother, Mary Diou; her sister, Eileen Macrum; her brother, Eugene; and her pets.

After receiving a kidney transplant in 1990, Mary Anne won gold, silver and bronze medals at the Los Angeles, Atlanta and Salt Lake City U.S. Mary Anne (center); with Karren King, chair, NKF Patient Services Transplant Games, and the Committee; and A. Bruce Bowden, immediate past chairman, NKF World Games in Manchester, Mary Anne, a financial National Kidney Foundation, 30 England. After winning five gold adviser for Merrill Lynch and E. 33rd Street, New York, NY medals in five events at the Dean Witter Reynolds, was 10016, to be earmarked for U.S. Winter Transplant Games recently appointed by NKF organ donation programs, in Aspen in 1995, she was Chairman Wendy Brown to particularly the Games. named “Outstanding Female chair the first executive Athlete.” Last May, Mary Anne committee of the new The family wants all of was honored by being named transAction Council. Mary Anne’s transplant an Olympic torch-bearer in Salt recipient friends to know that Lake City. The family has requested her illness was unrelated to her T that in lieu of flowers, transplant. C donations be made to the

The National Kidney Foundation recognizes the significant contributions made by Sandoz Transplant, a division of Novartis Pharmaceuticals Corporation, to transplant recipients around the country through its sponsorship of the following NKF programs: The 1998 U.S. Transplant Games; Transplant Chronicles; NKF/Sandoz Research Fellowship; and the NKF Annual Meeting.

National Kidney Foundation 30 East 33rd Street New York, NY 10016