Transplant Chronicles

Volume 7, Number 3 A publication for transplant recipients of all organs and their families, Winter 2000 published by the National Kidney Foundation, Inc. An Incredible Young Woman

A bby VanNortwick’s early The on-base clinic did not children’s hospital in Denver. childhood was fairly typical. She have the facilities or equipment Within a few days of arriving in was an active child, who to treat Abby, so she was Denver, Abby received a heart enjoyed activities such as jump airlifted to Triple Army Medical transplant. The operation was rope and bike riding. Then in Center in Honolulu, Hawaii, successful, and only two 1994 Abby’s dad, an where she stayed for nearly two months later, Abby was on the administration chief in the weeks. slopes learning to ski. She even Marines, was stationed in named her new heart “the Iwakuni, , that Abby’s Bomber,” after the life abruptly changed. downhill skiing technique Suddenly eight-year-old she used to careen down Abby began having severe the Rocky Mountains. chest pains. Her parents initially thought she had a Though she enjoyed stomach virus, but soon skiing, swimming became found she was suffering Abby’s passion. In 1997, from dehydration so that passion led Abby to debilitating that she was Sydney, , for the unable to walk or even World Transplant Games. dress herself. Her parents She competed in the 25- Abby VanNortwick, heart recipient and yard backstroke, 50-yard took her to the health clinic champion swimmer. on base. There, Abby freestyle, 50-yard breast- suffered something doctors stroke and 50-yard back- likened to a heart attack. Tests Unfortunately, Abby’s stroke and won the first-place showed that Abby had viral condition worsened, and gold medal in all four events. At myocarditis, an inflammation of doctors said her only hope for the 1998 U.S. Transplant the heart’s muscular walls. The survival was a new heart. Lack Games in Columbus, Ohio, virus kept the once active of proper facilities and Abby won four more gold young girl confined to a bed, equipment sent Abby to yet medals, one for each event in unable to play or go to school. another medical center, a Continued on page 3 transAction! Transplant Chronicles is a COUNCIL Program of the National Kidney Foundation, Inc., supported by Pharmaceuticals Corporation National Kidney Foundation ✍ editor’s desk Transplant Chronicles

Welcome to the last issue of Transplant Chronicles is published by Transplant Chronicles for the 20th the National Kidney Foundation, Inc. Century. Right about now everyone Opinions expressed in this publication do not necessarily represent the position of the National Kidney Foundation, Inc. is gearing up for the holidays and Editor-in-Chief: the new millennium. This time of Beverly Kirkpatrick, LSW year is always very stressful. You Philadelphia, Pennsylvania find yourself overeating, stressed Editors: Ira D. Davis, MD Vanessa Underwood, BS, about finances and forgetting to take Cleveland, Ohio AFAA, ACE Plaistow, New Hampshire Beverly Kirkpatrick care of #1...yourself. We hope you’ll Maurie Ferriter, BS find the articles in this issue on Lakeland, Michigan Jim Warren, MS Janet Karlix, PhD San Francisco, California health, diet and transplant to be helpful. Gainesville, Florida Becky Weseman, RD, CNSD, When we are busy, we tend to forget about the Teresa Shafer, RN, LMNT thousands still waiting for an organ transplant. Don’t MSN, CPTC Omaha, Nebraska Ft. Worth, Texas Laurel Williams Todd, RN, MSN forget to keep on your ambassador hat and, during Nancy Spinozzi, RD Omaha, Nebraska the season of giving, let those around you know that Boston, Massachusetts R. Patrick Wood, MD they too can give in the way of organ donation, by Charlie Thomas, CISW, ACSW Houston, Texas Phoenix, Arizona signing an donor card and discussing this decision Editorial Office: with their families National Kidney Foundation, Inc. 30 E. 33rd Street, New York, NY 10016 (800) 622-9010/(212) 889-2210 Have a joyous holiday season and we’ll see you http://www.kidney.org Executive Editor: Editorial Director: T in the next millennium. C Diane Goetz Gigi Politoski Managing Editor: Production Manager: Sara Kosowsky Austin Duffy Beverly Kirkpatrick Design Director: Oumaya Abi-Saab for the Editorial Board Photo credit pages 1 and 2: Jay LaPrete ✏ Sign Me Up... FOR A FREE MEMBERSHIP IN THE TRANSACTION COUNCIL

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2 Transplant Chronicles, Vol. 7, No. 3 the award to Abby, whom he called “an incredible An Incredible Young Woman young woman.” Impressed by her work and continued from page 1 commitment to promoting organ donation, Dr. which she competed: The 100-yard freestyle, 50- Pereira offered to host Abby on a trip to Boston yard backstroke, 50-yard breaststroke and 100- to speak to public school students. “Many yard breaststroke. children grow up with a feeling of entitlement,” says Dr. Pereira. “I thought they should listen to Though she is proud of her outstanding someone who was giving back to the performance at both the 1997 and community.” the 1998 U.S. Games and those eight hard- earned medals, Abby says competing was not Today, five years after her transplant, Abby is what excited her most. “I was more excited about still going strong. She swims with the Bangor meeting people who shared my experience,” she Trident Swim Team, and this past summer says. “It was nice to talk to people who conducted her own two-and-a-half-hour private understood what I went through.” practices while the team was on break. She is currently training for the 2000 U.S. Transplant As important as it was for Abby to be able to Games. She even practices with the masters, relate to and share with others who understood who, she says, have an even harder, more her experiences, it was even more intense workout than the youth team. Abby also important for her to talk about plays the violin in her school organ donation with people who orchestra, and for the past hadn’t considered it. To help three years she has entered her spread the word about the cause labrador retriever, Roxie, in a that saved her life, Abby has fitting, showing and obedience written numerous articles competition. published in Guideposts for Kids, Navy Times, Navy News, Rocky With all her accomplish- Mountain News and Trident Times. ments, medals and awards, She’s also shared her story with Abby says the most amazing the teen monthly Girls’ Life, Sports thing that has happened since Illustrated for Kids, The Boston Herald and the the transplant was simply Fox affiliate station in Seattle, Washington. Abby getting her normal life back. She says she’s admits she does enjoy the media attention happiest when reading and spending time with somewhat, however she says it’s not what drives her family. College is still a ways off for this her to do media interviews. “I don’t do it for eighth grader, but Abby already has her sights myself,” she says. “I do it because media set on a career in marine biology. “The Make A attention can change people’s minds about organ Wish Foundation granted my wish to go to donation. The more I talk about it, the more Hawaii and swim with the dolphins, which was a people become aware that they can save lives.” lot of fun,” says Abby. During that trip, another of Abby’s wishes was granted. She got to surprise Abby also gives talks to groups in her the doctors at Triple Army Medical Center in community, including her 4H Club and swim Honolulu and thank them for all they did for her team. At the 1998 U.S. Transplant Games, the and her family. Abby is very grateful for her life American Society of Transplant Physicians and her new start. As she puts it, presented Abby with a special award given to “Transplantation gives you a second chance at transplant athletes who have furthered the cause life. It improves your outlook and changes your of organ donation in their return to health and views.” This 13-year-old has some wise advise for productivity. Dr. Brian Pereira, vice chair of the fellow transplant recipients: “After your division of nephrology, New England Medical transplant, get involved in activities,” she says. Center in Boston, and member of the National “You don’t have to sit around because you’ve had Kidney Foundation board of directors, presented a transplant. Make the most of your second T chance.” C

Transplant Chronicles, Vol. 7, No. 3 3 When You Can’t Afford $ Your $ by Charlie Thomas, ACSW, CISW I t’s a frightening scenario: you have just become more common in learned that your insurance won’t cover your many communities. medications any longer. It has been over three Medications that were years since you received your transplant and originally prescribed to Medicare will no longer help with medications someone else are either or perhaps you have insurance, but have donated to a support reached your annual prescription limit. Your group or volunteer for pharmacy says your cost is now $500. The rent redistribution to is due and so are the car payments and the patients who can’t utility bills. What can you do? afford them. While this seems to be First, don’t do anything to hurt your style or widespread, there is one your health. Sometimes transplant recipients try significant problem. The to stretch their medication supply by skipping practice is illegal. Federal and state dosages or reducing the dosage themselves. This pharmacy laws exist to ensure the quality and can be very dangerous and cause permanent safety of medications. Donated medicines are damage to your transplant. It is understandable distributed among informal relationships and are that you may be reluctant to ask for help, not handled by a licensed pharmacist. Beware of especially when it involves finances. But your the risks associated with taking these transplant center wants you to know that it is all medications. Discuss any unprescribed with your right for you to call them if you have trouble physician or transplant center. obtaining your medication. Transplant centers try to remain current on the public and private Don’t hesitate to contact your transplant center whenever you have problems obtaining your medications. If you are aware of other The practice of sharing patients with the same problems, encourage them to call as well. You may also want to medications or using an contact your senators and congressional representatives to advocate for eliminating “underground” drug bank Medicare’s three-year limit on immuno- suppressive medications. seems to have become To learn more about expanding Medicare more common in many coverage for transplant medications contact the National Kidney Foundation’s Office of Scientific communities. T and Public Policy at 800-889-9559. C

Editor’s note: At production time of this issue, sources of medication assistance. These the House of Representatives passed a bill programs change occasionally and your removing the three-year limit on medicine coverage transplant center will have current information. for transplant medications, though the Senate did not yet vote on the bill. The practice of sharing medications or using an “underground” drug bank seems to have

4 Transplant Chronicles, Vol. 7, No. 3 ask the pharmacist Weight-Loss Drugs and the Transplant Patient by Janet Karlix, PhD

A mericans have an obsession with weight. A very important consideration for a Transplant recipients, however, have special transplant patient taking any new agent is the concerns when it comes to weight gain. Some of potential for drug interactions. Before starting the transplant medications they take, like any medication or even considering taking any steroids, may increase their . But while medication, a transplant patient should ask if many people try to lose weight by taking the new agent could interact with any of his or prescription or over-the-counter weight loss her transplant medications. Remember that drugs, it is very important for transplant patients cyclosporine, tacrolimus, mycophenolate and to discuss their weight problem with their health azathioprine are broken down by the . The care team before taking the same route. same chemical that breaks down cyclosporine and tacrolimus also breaks down . Although there is no drug interaction reported Within the past decade, there has been a for sibutramine and transplant medications, movement towards treating with there is a high potential for one. Because pharmacological agents. These drugs were affects the stomach and small intestine, orlistat designed to treat patients who were morbidly may block the absorption of some drugs and overweight, which is defined as being sufficiently dietary supplements. interacts with overweight preventing normal activity or some antidepressant drugs and appears not to physiologic function, or to cause the onset of a interact with antirejection agents, but it may pathologic condition. cause increased blood pressure and should be avoided. Some of these agents were discovered to possess some serious adverse side effects like The FDA has only deemed one over-the- heart problems, and this discovery has led to the counter product as safe and effective for weight removal of some of the prescription weight loss loss, [PPA], which is the products. There was a lot of publicity surround- active ingredient in Dexatrim and is also used as ing the discontinuation of or Fen a nasal congestant. It works similarly to Fen [Pondimin] and dexenfluramine [Redux]. phentemine and has similar adverse effects. The There are three prescription products for weight chemical structure is like that of loss that remain on the market: Sibutramine and can cause nervousness, irritability, heart [Meridia], orlistat [Xenical] and phentermine , coronary heart disease and [marketed under numerous trade names]. hypertension. Patients who are hyperthyroid and diabetic should avoid PPA. The patient Sibutramine and phentermine both suppress a information sheet states that patients taking any person’s appetite by changing some of the brain prescription drugs should not take Dexatrim chemicals. Consequently, some of the side effects except on the advice of a doctor. In addition, of these agents include effects on the nervous patients on any oral should not system such as headaches, euphoria, emotional take Dexatrim because they may be administered instability, restlessness, tremors, anorexia, an additional dose of PPA. insomnia, depression, anxiety, dizziness and drowsiness. Phentermine can also affect heart Thus, transplant patients should not request function, with usage often resulting in or take weight loss drugs unless prescribed by hypertension and heart palpitations. Orlistat their transplant doctor. If the transplant produces weight loss by inhibiting nutrient recipient needs to lose weight, it should only be absorption in the stomach and small intestine. T done in a supervised weight loss program. C One of the main side effects of orlistat is gas. It also produces side effects such as increased defecation and urgency, abdominal pain, nausea/vomiting and diarrhea. Transplant Chronicles, Vol. 7, No. 3 5 keeping fit Frequently Asked Questions About Exercise and Fitness by Vanessa Underwood, BS, AFAA, ACE

E ven if you’ve been exercising for years, you may have questions, and won’t know the reasons for doing certain things or the correct way to do them. Following are answers to some common questions to help insure success in your exercise regimen.

1. What is the difference between muscular 6. Should I cross train? Yes. Cross training is strength and muscular endurance? effective in keeping you from reaching a Muscular strength refers to how much weight plateau of burnout and boredom, as well as you can lift. Muscular endurance refers to the preventing injuries from overuse by doing the ability to repeatedly lift a certain amount of same exercise day after day. You should try to weight, or the number of times you can lift alternate between two activities each week. something. 7. How do I get off a plateau? Change your 2. Does stretching improve flexibility? Yes. workouts. Change the exercise as well as the You must be sure to do static stretches (no duration and intensity. Once your body gets bouncing). Hold for about ten seconds and you used to an activity, it adapts and no longer will improve your flexibility, circulation, makes changes. You need to continually muscle tone and much more. challenge yourself. 3. Which are better: free weights or 8. When is the best time of day to machines? Machines are actually safer if exercise? Exercise when you feel you you are working out alone. They are also have the most time to relax and enjoy it. a good place to begin, as they will allow You should not be stressed about you to do the exercises in good form. Free exercising. weights are a bit tougher, as they incorporate more muscles for balance. 9. Will exercise help with the side effects Free weights can be adapted to your range of of medication? Yes. It is critical that you motion and body size. You should be taught incorporate exercise into your health care by a trainer before using free weights, and plan. As a recipient, you need to keep all never exercise with heavy weights except in your systems strong. You need to promote the presence of a trainer or spotter. fat loss while increasing and preserving muscle mass. 4. Can I do aerobic and weight training on the 10. Will I hurt or injure my transplanted organ same day? If you have the energy, it is if I exercise? No. You need to exercise to live perfectly fine to do both on the same day. Be a quality life! You should not do any activity sure you build a good fitness level before doing that poses a threat of a direct hit to your this. It takes 8 to 10 weeks to build a good organ. If you are careful, you will be fine. level of fitness. ✏ Remember: 5. Can I do aerobic/cardiovascular exercise • It takes 21 days to create a habit and 8 to 10 every day? You can, but you will probably weeks to build a good fitness level. get burned out and bored. Three to five times • The first four to six minutes are always the per week is ideal. toughest. • To lose one pound of fat, you need to burn 6. Can I do weight training every day? 3500 calories. It depends on whether you are working your entire body each day. If you are, you need Believe in yourself, believe in the benefits to rest in between. If you want to work out and begin now. What your mind perceives, T every day, then do upper body one day and your body will achieve. C lower body the next day. Editor’s note: Always consult with your doctor before beginning an exercise program. 6 Transplant Chronicles, Vol. 7, No. 3 Health Maintenance by Maurie Ferriter and Ira Davis, MD

A fter a person goes through the transplant just about everybody. Exercise is important process and is ready to go out into the world, because it can make you feel healthier. It can also there are some issues that need to be addressed reduce the blood levels of cholesterol and in everyday life. Some of these issues are related triglycerides, lowering these levels decreases a to how people make choices about some of the person’s risk of heart disease. Healthy eating little everyday habits we all have. For this article, diminishes the chance of having high blood we are calling these health maintenance issues. pressure, which is common in transplant There are five categories: common sense, general recipients. hygiene, healthy lifestyle, dental and immuniza- Dental: Care of teeth and gums can play a tions. We’ll look at each one. major role in general health since some transplant Common Sense: We are talking about things medications may cause gum disease, gum such as putting yourself at risk for a sharp blow overgrowth and bleeding. As a result, brushing or trauma to the transplanted organ. Adults, teeth at least twice daily is essential. Most children and parents need to use good judgment insurance companies pay for a dental visit every by not participating in heavy contact sports such six months. Many transplant recipients pay for as football, boxing, judo or that present two additional visits and go quarterly. Children obvious risks for possible injury. Most people should see their dentist at least two times a year would agree these activities should be avoided. starting at age three. In addition to more frequent Other things, however, are not so easy to decide dental checkups and cleanings two times a year, on: Do I climb up ten feet on that wooden ladder people with transplants usually need doses of to trim the dead branch out of my tree? Or, antibiotics before and after a dentist visit, since should I call a tree trimmer to cut down the the mouth is a prime area for infection. Proper branch. These are only some examples of choices dental care following a transplant is especially we can make. This type of thought process goes important in children with braces and retainers. on with everyone, everyday. If its not a tree Immunizations & Diseases: The immune branch, it is about lifting a 40-pound bag of dog system of transplant patients is suppressed, food, riding a three-wheeled motor vehicle or which predisposes people to significant illnesses racing a bike down the steepest hill in town with from many viruses, such as measles and chicken no hands. Each person’s perception of risk is pox, as well as bacterial infections. One way to different, but common sense needs to dictate the prevent these complications is to be sure that decision process. transplant candidates are properly immunized General Hygiene: Most people know that prior to their transplant operation. Live virus the single most effective way to prevent germ vaccines such as the measles vaccine should not transmission is to wash their hands. This espe- be given, especially to children, following a cially applies to transplant recipients because they transplant. Several other immunizations may be have a suppressed immune system. Other tips: recommended, including the influenza vaccine Not sharing food with others, not drinking out of which are given each fall season following your other peoples cans or glasses and not standing in transplant in order to prevent flu symptoms. front of a person who is coughing or sneezing. Other medicines are available to prevent problems related to other viruses, including CMV and EBV. Healthy Lifestyle: Illicit drugs, alcohol, Transplant recipients who have not had chicken prescription drugs, tobacco and many other pox should avoid contact with anyone who has an things are widely available in our culture. The risk active infection until all skin lesions are crusted of using these substances is compounded for over. transplant recipients. Another important consideration for transplant recipients is diet and Some people may see those precautions as exercise. That fast food burger, fries and a cola inconvenient or maybe even paranoic, but these won’t harm anyone as long as they are not an are some of the tradeoffs of transplantation. everyday habit. A little walk or swim could benefit

Continued on page 8

Transplant Chronicles, Vol. 7, No. 3 7 When Your Child Outgrows Your Medical Insurance: Be Prepared! by Nancy S. Spinozzi, RD, and Evelyn Corsini, LICSW

Most parents worry about what to do when payment for the dependent’s premium. This their child is no longer covered by their medical provides a temporary “fix” or “bridge” while you insurance policy. It is important that parents are negotiating permanent coverage. become familiar with all of the details of their medical insurance plan, such as: Currently, the best way your son or daughter will be able to secure medical insurance • what are the possible extensions is through his or her employer. available Employment in a company that provides full medical coverage at an • what events affect coverage—age affordable price is ideal. However, if (e.g., 21), student status (full-time) your child is unable to work, there are or a combination of both (full-time government health programs that can student up until the age of 23) provide insurance. Medicaid is a federal • what exceptions the insurance program run by the state. If your son or company can make if the child is daughter is preparing for a vocation, disabled. Even if children are over Medicaid may provide temporary 21 and not in school, they may insurance coverage. This is an example remain covered by their parents’ of how the federal government provides insurance if they are disabled. work incentives so disabled people can achieve self-sufficiency. You can learn about this information from your benefits office at work or from the Helpful resources that are available member services department of your insurance to you and your child include parent and/or company. Most employers renegotiate their disease support groups, your state insurance insurance contracts every year, so it is important commission, your state’s health and human to keep track of any coverage changes that might services department and department of public take place at that time. health, and your employer or your child’s T employer. C You should also be aware of the COBRA federal law that provides extended coverage for a period Evelyn Corsini, LICSW, is a social worker in the of time (usually 18 months) for dependents about division of nephrology at the Children’s Hospital in to lose coverage. The family assumes full Boston.

Are We Missing You? Health Maintenance continued from page 7

If you or someone you know would like People cannot be expected to live in a bubble, either. There is a balance in the choices each to receive a free home subscription recipient makes in living a full, rewarding and productive life. That balance can be made easier to Transplant Chronicles, send your T with proper health maintenance. C request to Transplant Chronicles, National Kidney Foundation, 30 East Editor’s Note: Please consult with your 33rd Street, New York, NY 10016, or transplant physician regarding these immunizations and medications. call (800) 622-9010.

8 Transplant Chronicles, Vol. 7, No. 3 Transplant News Digest

Winter Edition of Transplant Chronicles IOM recommends significant changes in current organ allocation system to assure fairness, effectiveness by Jim Warren, editor and publisher

As report cards go, the grades were fair: “These findings make clear that changes are maybe B- or C+. The much-anticipated urgently needed to produce better and fairer Institute of Medicine report on the state of outcomes for our nation’s organ transplant organ allocation in the US released recently patients,” said Donna Shalala, Secretary of concluded that the status quo is good, but not Health and Human Services. “The panel’s good enough. findings strongly validate the concerns which HHS has had about the present system, and “The current system of organ procurement they support the approach we have put forward and allocation works reasonably well, but for improving it. The panel finds that broader significant improvements in both its fairness sharing will increase transplantation rates for and its effectiveness could be made,” said patients with greatest medical need, and in that Edward Penhoet, chairman of the Institute of way more lives can be saved.” Medicine (IOM) committee on Organ Procure- ment and Transplantation Policy, in releasing Not surprisingly, the United Network for the report. Organ Sharing (UNOS), a vigorous opponent of the HHS regulation, viewed the report The report went on to say that significant differently. changes are needed to assure that organs are equitably allocated to patients with the most “Although the Institute of Medicine’s report urgent medical need. Moreover, the federal endorses increased federal oversight, its government should be more active in its scientific findings knock out the very foundation oversight of the nation’s organ procurement and of the pending regulations and we will transplantation system if it is going to impact respectfully ask the Department of Health an increase in its effectiveness. and Human Services to withdraw them,” said William Payne, MD, UNOS president, in a letter “The committee strongly believes that the to UNOS members. “We’ve made progress in our federal government should provide oversight recent discussions with HHS, and we ask that and review of the organ procurement and they continue to work with us to build a transplantation system with a focus on national organ-transplant system that continues assuring that the system is equitable, is to be fair and equitable and has the support of grounded on sound medical science, and the medical and transplant community.” always places the highest priority on the needs of the patients it serves,” the committee wrote. Ultimately, the findings and recommenda- tions of the committee, which were based on a The committee’s findings were hailed by review and analysis of 68,000 liver transplant the Clinton administration as a validation of the records, will stand on their own, however. Department of Health and Human Services (HHS) regulation to require organs to be alloc- The IOM committee said it focused its ated to the sickest patients first. Barring some attention primarily on issues relating to the unforeseen development, that regulation is policies and data concerning liver procurement expected to be implemented by the end of 1999. and allocation, because those were at the center of the debate leading up to its study. Here are the five major recommendations in the 210- page report.

Transplant Chronicles, Vol. 7, No. 3 9 1: Establish Organ Allocation Areas for based on finding that organ procurement —The DHHS Final Rule [should] be organizations serving larger populations are implemented by the establishment of Organ associated with improved access for the most Allocation Areas (OAAs) for livers, each needy patients and with lower mortality rates serving a population base of at least 9 following transplantation. It stressed that million people. allocation areas for other organs may differ depending on how long they can remain viable 2: Discontinue Use of Waiting Time as an outside the body. Allocation Criterion for Patients in Statuses 2B and 3 —The heterogeneity and The committee said it recommended the wide range of severity of illness in statuses elimination of waiting time as an allocation 2B and 3 make waiting time relatively criterion for status 2B and 3 patients because it misleading within these categories. For this is a “misleading” indicator of how the system reason, waiting time should be discontinued might be performing. as an allocation criterion for status 2B and 3 patients. Based on a thorough review of waiting time for liver transplants, the committee found that those 3: Exercise Federal Oversight —HHS should with the highest medical need actually wait for a exercise the legitimate oversight responsib- comparable period of time at sites around the ilities assigned to it by the National Organ country. However, the transplantation rates do Transplant Act, and articulated in the Final vary for patients who are not as ill, depending on Rule, to manage the system of organ the size and location of the OPO that serves the procurement and transplantation in the transplant center where the patient is registered. public interest. They also found that patients who are less ill sometimes receive transplants before more 4: Establish Independent Scientific Review severely ill patients who are served by a different —HHS should establish an external, OPO. independent, and multidisciplinary scientific review board responsible for assisting the PERITONEAL DIALYSIS SHOULD BE USED Secretary in ensuring that the system of FOR PATIENTS WAITING FOR KIDNEY organ procurement and transplantation is grounded on the best available medical TRANSPLANTS: SAYS STUDY science and is as effective and as equitable as possible. Peritoneal dialysis should be a first-line therapy for patients awaiting kidney 5: Improve Data Collection and transplantation, according to European Dissemination —Within the bounds of donor researchers. and recipient confidentiality and sound medical judgement, the OPTN contractor Raymond Vanholder of University Hospital in should improve its collection of standardized Gent, and colleagues in Belgium and and useful data regarding the system of examined the incidence of acute renal organ procurement and transplantation and graft failure in patients who received either make it widely available to independent continuous ambulatory peritoneal dialysis or investigators and scientific reviewers in a hemodialysis prior to transplantation. Reporting timely manner. The Department of Health their findings in the May 1999 issue of the and Human Services should provide an American Journal of Kidney Diseases, the independent, objective assessment of the authors noted that delayed graft function was quality and effectiveness of the data that are more than twice as common in the hemodialysis collected and how they are analyzed and group compared to those given peritoneal disseminated by the OPTN. dialysis, with rates of 50.4% and 23.1%, respectively. In addition, serum creatinine The committee said its decision to recommend dropped more quickly in the peritoneal dialysis that livers be allocated over an area large enough group than in patients receiving hemodialysis, to serve at least a population of 9 million was taking an average of 5.0 days and 9.8 days, respectively, to decrease by 50%.

10 Transplant Chronicles, Vol. 7, No. 3 DIABETICS IN ESRD DO BETTER WITH DRUG THAT INHIBITS HIV MAY PREVENT SIMULTANEOUS KIDNEY-PANCREAS ORGAN TRANSPLANT REJECTION TRANSPLANTS, ACCORDING TO REPORT An experimental drug that inhibits HIV also Diabetics in end-stage renal failure appear to may help prevent rejection of transplanted survive longer when treated with simultaneous organs, Belgium researchers reported in the pancreas-kidney transplantation than when August issue of Nature Medicine. given kidney grafts alone, Dutch researchers report in the June 5th issue of The Lancet. The drug, called azodicarbonamide, already is being tested in patients with HIV, and in a study Yves Smets, MD, of Leiden University Medical in mice, the drug-delayed rejection of skin grafts. Centre in the , and colleagues, Michel Goldman, PhD, and colleagues at the compared long-term survival of 330 patients Universite Libre Bruxelles in Brussels found that treated with kidney transplantation alone with the higher dose of the drug, the longer it took for 85 patients who received combination pancreas- the immune systems of the mice to reject the kidney transplants. The researchers found that grafts. patient survival curves diverged three years after transplantation, with the combined transplant Azocarbonamide “blunted their response to group having a 50% lower mortality rate. This polyclonal T-cell activation,” inhibiting both finding, they said, implies “involvement of helper T-cells, the type of cells attacked by HIV, pathophysiological mechanisms rather than and killer T-cells, the team wrote. recipient risk factors or technical success.” In addition to treating HIV and preventing 50% OF PATIENTS WITH CHRONIC HEART organ rejection, the researchers speculate that azocarbonamide may be useful in treating FAILURE WHO GET TRANSPLANTS SURVIVE autoimmune or allergic disorders. AT LEAST 10 YEARS HHS INSPECTOR GENERAL FINDS LOCAL Nearly half of all patients with congestive ACCESS PLAYS LITTLE ROLE IN WHERE heart failure (CHF) who receive cardiac transplants survive at least 10 years, German PATIENT RECEIVES LIVER TRANSPLANT researchers reported in the July issue of Heart. Opponents of the federal government’s push “Heart transplantation provides the most for allocating organs based solely on medical effective treatment for patients with end-stage urgency not geographical location have long heart failure,” wrote S. Fraund, MD, and argued that ignoring a patient’s geographic colleagues, at Hannover (Germany) Medical location would create a hardship for people in School. “However, only limited data are available small communities currently served by small on the long-term success of this procedure.” transplant centers.

To address this issue, the investigators had However, a newly released report by the evaluated long-term survival and functioning in Department of Health and Human Services 120 patients who underwent heart transplan- (HHS) Office of Inspector General states flatly tation between October 1984 and 1987. The such an assumption is false because underlying disease was dilated cardiomyopathy “widespread local access to liver transplant in 69 patients and coronary artery disease in 42; centers is a myth” because a majority of the remaining 9 patients had miscellaneous Americans are not transplanted locally. diagnoses. Of this cohort, 65% survived at least 5 years and 48% survived longer than 10 years. Using data from the 1998 Annual Report of the US Scientific Registry of Transplant Major obstacles remaining to be surmounted Recipients and the Organ Procurement and in the future were prevention of chronic graft Transplantation Network, the inspector general vasculopathy and malignancies. These diagnoses found that in 1997, more than 80% of liver accounted for 39% and 11% of the deaths in the transplants were performed in just 35 cities; and study cohort, respectively. more than half of all liver transplants were

Transplant Chronicles, Vol. 7, No. 3 11 performed in just 20 of the 117 liver transplant with these transplant centers. Finally, centers in the US. establishing a liver center is too costly for some hospitals. The OIG stressed that it draws no conclusions about the value of local access to transplant The report can also be found on the World centers. “Arguments can be made about both the Wide Web: http://www.dhhs.gov/progorrg/oei advantages and disadvantages of local, but generally low volume transplant centers versus UNOS BLOCKS REGION 7 LIVER SHARING high volume centers that draw patients from a AGREEMENT THAT EXCLUDED ILLINOIS broader geographic area,” the inspector general concluded. “However, the study does show that An attempt by Wisconsin, Minnesota, North the assumption about the availability of local Dakota and South Dakota to create a liver access is flawed. . . National policies on organ sharing arrangement excluding neighboring allocation are not likely to affect the overall Illinois has been halted by the United Network for distribution of transplant centers one way or the Organ Sharing (UNOS). The four states had taken other. Instead, basic factors other than the action because of their concern that allocation policy affect this access, including the transplant programs in Chicago would get more shortage of organs, the relationship between the donated livers in the region because of new number of transplants and patient outcomes, the guidelines from UNOS which dictate that organs high costs of running a transplant center, and go to sickest Status 1 patients first. Chicago the housing of liver transplant programs in typically has 6 to 7 Status 1 patients a month. urban academic medical centers.” However, the UNOS Executive Committee, Here are some of the findings presented in the acting under the aegis that the situation was too executive summary of the 15-page report: urgent to await full board approval, directed the states, including Illinois, to continue to allocate I The 117 liver transplant centers cluster livers according to established UNOS policy. The around major metropolitan areas. This committee also told the states, which comprise pattern leaves large portions of the US Region 7, to begin a “limited payback system population at considerable distance from a within the region” until the situation is resolved. transplant center. This distribution has changed little in recent years. UNOS emphasized it expects the states to resolve the situation using a “formal conflict I A small number of transplant centers resolution process,” adding that any formal account for the great majority of all agreement reached by the states would replace transplants performed. Many smaller the “interim actions” adopted by the Executive transplant centers have been operating for Committee. several years at low volume. The dispute underscores regional tensions that I Fundamental factors constrain broad have developed in the wake of the Department of geographic distribution of liver transplant Health and Human Services (HHS) rule which centers. There are limited numbers of requires UNOS to develop a plan to share organs organs for transplant. Smaller centers are according to a “sickest first policy” not as a result highly selective about the organs they will of geographical location. The rule is scheduled to accept for patients, so the number of be implemented at the end of this year. T transplants they do is low. Purchasers of C transplants are less inclined to contract

12 Transplant Chronicles, Vol. 7, No. 3 A Refuge For Us Both

by Linda Anton

On my first visit to Horsin’ Around in Once a week, I would head out to Chattanooga Chattanooga I instinctively felt that the oppor- just as Glenn and I had been doing when our life tunity to join Bud Ellis’s wood carving class was was normal. Once a week I went back in time to not to be missed. Although the commitment of a place where everything moved at a deliberate time and resources was a large one for me and pace and only old-fashioned craftsmanship and my husband Glenn, the promise of creating a pride were my lessons. beautiful full sized carousel horse with our own hands was irresistibly appealing to us. The Pain and fear and worries faded to soft project delighted us from the start, but we had shadows while I collected joyful events and no idea what priceless gifts we would gain from smiles to share with Glenn back in his hospital the experience. room. On my sunny workbench at the carving school, perfect curls of After starting our carving, we basswood whispered off my chisel discovered that students and and carpeted the old oak floor under volunteers at the school had been my feet. Our friends in class working almost nine years to restore laughed and chattered about their an antique carousel built in 1895. carvings and sent kind words and New mechanics, paintings, prayers to Glenn. When it was time decorations and animals were all to return to Glenn’s room at the part of the plan. As our small hospital, I felt as eager to share the jumper came to life under our day’s events with him as he was to chisels, we hoped he would be hear something besides status accepted for a place on the old reports and pump alarms. The carousel. To our joy, our instructor, jumper became a refuge for us both. Bud Ellis, did give our pony a place on the restored machine. From spring through summer we Glenn and Linda (with existed in this way. Then, on July 1, Then disaster struck. Glenn’s their carousel horse, he received his transplant and after heart, badly damaged by a heart Midnight) after Glenn’s two months of healing Glenn made attack (blocked artery) in 1988, had transplant. his first trip to Chattanooga to see gradually become so enlarged that he the progress I had made on the could barely carry out the simplest tasks. In May pony. With his help, I finished painting our 1998 after a frightening incident during a right carving, added a medallion with our initials, and heart cath, Glenn was admitted to St. Joseph’s a band of red heart-shaped stones to decorate with cardiomiopathy. Our cardiologist, Dr. the chest harness. Finally, almost two years after Jansen gave us the grim news that the only hope we made our original commitment, we sat side for Glenn was a heart transplant. Without that by side in a row of rocking chairs to watch our gift, it was likely he would not live for more than finished carving spin and dance on the beautiful a year. restored carousel.

On that bright spring day in May, everything If you happen to visit Cooledge Park in normal stopped. For the next three months our Chattanooga, take a minute to sit in a rocking attention would be focused on Glenn’s survival— chair beside the old carousel. If you notice a little and little else. black jumping horse behind all the others, look for a band of red hearts on his chest. You will I should say, little else with one shining know what most people never realize. Those exception—the carving. That project had become hearts are not just decorations; they are shining so special to both me and Glenn that he insisted there for a miracle. They are shinning for Glenn I set aside one day a week to keep working on it. T and his donor. C

Transplant Chronicles, Vol. 7, No. 3 13 eating right Nutrition Problems and Dietary Issues by Becky Weseman, RD, CNSD, KMNT

Before, during, and after your organ Saturated fats found in shortenings and stick transplant, specialized nutrition is important to margarines can also lead to increased cholesterol help reduce symptoms associated with disease. levels. Guidelines for reducing your cholesterol But problems can result in part due to the anti- level should focus on eating less animal fat and rejection medications you must take—problems reducing your total fat intake to 30% or less of like obesity, hyperlipidemia (increased fats in the your total calories per day. Reading food labels blood), diabetes (high blood sugars), and will help you decide if what you have selected has hyperkalemia (increased blood potassium level), an acceptable level of fat. hypertension (increased blood pressure), and osteoporosis (more porous bones). If and when Diabetes any of these conditions affects you, you may have to change your diet. You may have experienced high blood sugars after transplant when you were given high levels Obesity of . This may or may not have required insulin for adequate control. It is Obesity can be due to an improved appetite necessary to keep your weight in an acceptable when feeling better after transplant and, most range to prevent problems with high blood likely, to a lack of exercise. Too much of a weight sugars. Excessive weight gain can make it harder gain can lead to further health problems such as for your body to use the insulin it produces and high blood pressure or diabetes. So what can be to control blood glucose levels. done about this? Prevention is the best approach! As you may have experienced for Hyperkalemia yourself, It’s easier to gain weight than it is to take it off! A good appetite is often a “healthy” For some transplant recipients, sign but too much of a good thing can lead depending on the type of anti-rejection to trouble. Make healthy food choices using medication taken, high blood potassium the Food Guide Pyramid as a guideline. levels can result. This may require Focus on eating fewer fried foods and medication if the level is critically high. choosing instead foods that are lower in For some, however, it means simply fat and sugar. This will help in reducing high potassium foods in their controlling calories eaten. This will diet. High potassium foods include contribute to maintaining an tomatoes, potatoes, melon, orange appropriate weight for your height. juice, milk and raisins. Learning to limit these potassium-containing foods and others may Hyperlipidemia require individual session with a registered dietitian. If your doctor tells you your cholesterol level is higher than recommended, a change in the type Hypertension and amount of fat you eat may be required. Cholesterol is made by our own bodies but is In the case of high blood pressure, a low also consumed in foods high in animal fat, such sodium diet is generally recommended. Just as as: you may have needed to control your salt intake • whole milk and whole milk dairy products before transplant, a limit to about 2 grams daily • fat on a steak or pork chop may be suggested. Sodium intake is often higher • skin on chicken or turkey in the diet of those people eating away from • egg yolks. home or eating higher levels of processed and

Continued on page 15

14 Transplant Chronicles, Vol. 7, No. 3 eating right… continued from page 14 poetry corner

“ready-to-eat” items. Some sources of salt are foods that have visible salt on them such as crackers. Smoked and cured meats, canned soups and vegetables with added salt, as well as pickles and sauerkraut in a brine will cause your sodium levels to skyrocket. By starting with fresh items such as fresh vegetables and meats, home-cooked meals can have significantly lower levels of sodium and yet be very tasteful! Osteoporosis Americans are paying more attention to the level of calcium in their diets. With long-term Ed Randolph and his sister Susan in their therapy, a transplant recipient younger days. can have increased calcium losses. High dietary sources of calcium include low-fat milk and milk products such as cheese and yogurt, Angel in Paradise calcium fortified juices, and canned fish with bones. In the reduction of bone fracture risk it For my sister, Susan is important to have a consistent and adequate amount of calcium daily. by Ed Randolph you walk between the rain drops All of these above-mentioned post-transplant my life’s one constant source of nutrition issues can be introduced as part of uncompromising love selecting a healthy and well-balanced diet. sister, dear sister Select your foods wisely and eat to live! It can be oh, how I love thee easier than you think! and now that you’ve touched me Editor’s note: Remember to talk to your with your heart once again dietitian before making any changes to your my life will illuminate T diet. C you live as an angel never letting me stray too far Thank God for Transplant from our bond since childhood by Alex D. Osborn which will not be broken

With my kidney transplant now, when I find myself at existence’s I am a new man. weakest point Twas part of God’s plan. you make the ultimate sacrifice A transplant can give you giving part of your own body a whole new life. so that I might have I need to say that twice. a second chance at life Now I know that I will not die wherever you are until my number comes up heaven is with you on the big clock in the sky. angel in paradise reflected in my soul “Thank you God!” and forever next to my heart. T for my new kidney. C Tis a blessing from You. Ed Randolph received a kidney from his sister T Tis true! C in July 1998.

Transplant Chronicles, Vol. 7, No. 3 15 Between Donor Families & Recipients Life and Organ Donation by Sharon Van Haitsma-Bytwerk

A little less than two years ago, our family For me, to be human is to recognize that was living in Budapest, . My husband, others are also human. God created us here on Randy, a college professor, and I were hosting a earth as a community. If we want the best for semester abroad for 16 college students. We were ourselves or our children, then we must also enjoying our stay and delighting in trips into want the best for others. Though these were not neighboring countries. The first weekend in my conscious thoughts after Kate’s accident and October, we went to and hiked in the the reason we sought organ donation, these are Tatra Mountains near Poprad with some of the my life’s views. The desire for donation naturally students and our daughter, Kate. The hiking was followed. spectacular. Our mountain hut was cozy. That night Kate and the students watched shooting There was one other reason we chose stars. They had a wonderful time. donation. Donation was Kate’s choice. Some months before we left for Hungary, Kate and I In the morning, the weather watched a segment on TV about was cold and damp, most of us organ donation. When it was stayed inside. Kate asked to finished, Kate and I talked step outside for a minute, and about it. I asked Kate what she since she was a sensible girl, thought about organ donation. Randy said okay. We do not Her response, as I remember it, know what happened next. We was “Of course, how dumb, you will never know how she fell. don’t need your body anymore, She broke no bones and was so if you can help another, why not even badly bruised. But she wouldn’t you?” She was only did hit her head. She was 12, but her understanding of brought to the hospital in life was deep. Poprad. At first we didn’t think her injuries were life- I have never regretted the threatening. I had a few decision. I continue to feel minutes to talk to her. She organ donation is life-giving and pulled my head to her pillow offers only benefits, including and said, “Mommy.” She went the benefit of knowing Kate’s to sleep, then fell into a coma, With a life cut so short, Kate life was of value beyond the and finally her brain could family. With a life cut so short, handle no more swelling. Her life still had the noble opportunity to give life to others. Kate still had the noble was over, though the machines opportunity to give life to kept the pace of her breathing. others. Kate has done a great work. That gives me comfort. There is also the reward of knowing We asked the doctors about organ donation. others are living because of Kate. It gives me joy We were surprised to discover that Slovakia was to think others now have the opportunity to live unable to accept any organs from Kate. Organ fuller lives. I would like to meet them. I, in no donation was natural for us for several reasons. I way, think they owe me anything, but I would knew the daughter I had nourished and loved so like them to know I wish them well. happily was gone. Once I reached that realiza- tion, it was time to think of others. I knew her I am not an extraordinary woman or mother, body, which was beautiful, was her body and not but Kate’s death has given me, and her, an her soul. Kate didn’t need her body anymore, but extraordinary experience. In giving what we we knew there were others who did. We were couldn’t keep anyway, I have been comforted. T pleased to learn that Vienna would fly her there C and accept the donation.

Transplant Chronicles, Vol. 7, No. 3 16 medical beat Vancomycin-Resistant Enterococci: What Do They Mean for Transplant Patients? by Edward A. Dominguez, MD, FACP

O ne of the most important medical achieve- antibiotic use in transplant recipients can possibly ments of the century was the discovery of be useful. In fact, we do not know why this is so. penicillin, the inaugural event in the antibiotic We do know that when hospitals are more age. Every breakthrough, however, has a thoughtful about who receives antibiotics and for downside. For antibiotics, it is the appearance of how long, the number of infections with VRE seem the “superbugs,” bacteria resistant to numerous to decrease. It is likely that this approach will also antibiotics. Among the more common of these in work in outpatient clinics; after all, many more the transplant setting are vancomycin-resistant antibiotics are prescribed there than in hospitals. enterococci (VRE). These bacteria challenge doctors, nurses and drug companies to find new A frequent problem encountered with VRE is ways to prevent and treat infections. called “colonization.” This means that a person has VRE growing in a culture but has no Enterococci are common bacteria found in the symptoms of infection (e.g., fever, chills, etc.). intestinal tracts of humans. They were known to When this occurs, antibiotic treatment is not cause occasional infections for decades; necessary although all infection control antibiotics like penicillins and vancomycin would procedures remain in force. We still want to reliably cure these infections. In the 1980s, prevent spreading the bacteria to other patients. however, the enterococci developed resistance to Healthy people are extremely unlikely to get ill the penicillins, then vancomycin—in other words, from VRE. People who have undergone they became VRE. The term vancomycin-resistant transplantation, however, are more susceptible to is somewhat inaccurate, though. VRE are often any infection, including VRE. When a patient resistant to most other antibiotics as well. This needs treatment for a VRE infection, a multidrug resistance makes treatment of VRE combination of at least two antibiotics is infections a challenge. preferred. Unfortunately, the combination that works for one patient may not work for another. How is VRE transmitted? Person-to-person There are newer antibiotics better able to cure contact is the major route of spread. These VRE infections, but they are still awaiting bacteria can survive over 24 hours on bedrails, approval. Until then, the goal is to find the safest, doorknobs, faucets, telephones and thermo- most effective combination for each patient. meters, among other things. We must assume, then, that every item in a hospital room of a Although there may be a time soon when we patient with VRE has the bacteria on it. This is are less concerned about VRE, our fear is that the justification for isolating such patients. The other resident bacteria are waiting in the wings. term describing this is “contact isolation,” and it Moreover, there may be threats that are more means we must wear gloves and gowns when dangerous. To meet these threats head on, new entering a patient room. Even more important is antibiotics and vaccines will certainly be useful. hand-washing before entering and upon leaving However, to preserve their usefulness, we must the room. Hospital personnel and visitors must observe simple preventative measures that we practice these measures because they are effective alone control, like handwashing and appropriate T in limiting the spread of VRE. antibiotic use. C

Although observing isolation procedures is Edward A. Dominguez, MD, FACP, is Assistant important, it is not enough. Many studies show Professor of Internal Medicine and Infections that the widespread use of antibiotics contributes Disease at the University of Nebraska Medical to the VRE problem. Patients and prescribers Center. alike have trouble understanding how limiting

Transplant Chronicles, Vol. 7, No. 3 17 Transplant Recipients: How to be an Ambassador for Organ Donation by Teresa Shafer, RN, MSN, CPTC R eceiving the gift of a second chance at life a recipient who encourages others to enter this often inspires within transplant recipients the world when faced with an opportunity to donate desire to give back—to thank someone for the has surely served as the best kind of ambas- marvelous colors, smells and feelings they now sador for organ donation. appreciate more than before. Before they knew what it was like to experience poor health and Consider the following activities in an uncertain future. becoming an Ambassador to Organ Donation: Wanting to give back, to express one’s appreciation for the gift of an organ, is natural and commendable. In my mind, it indicates a Live a good example. certain level of manners, of a good upbringing. Volunteer with an organ procurement Transplant recipients can first and foremost organization (OPO). OPOs are relatively be ambassadors for organ donation by living small organizations. They have a big task, well and enjoying a healthier and meaningful however, to not only recover organs for life. By maintaining an active and vital presence transplantation, but to provide some level within their families and communities, of public education. This task is huge and transplant recipients demonstrate to the unmanageable for the small number of community the great value of organ donation. staff employed by the OPO. Volunteers, Organ donation also helps the community by particularly transplant recipients, are allowing individuals to do something for others desperately needed to talk to groups and that they may not have previously considered. fill the many public-speaking engagements Perhaps this is the greatest good it can and community events that OPOs engender: benevolence. coordinate. Some people go through life never Write letters to the editors of local experiencing the opportunity to do something newspapers about the benefits of organ life-saving, something dramatic and profound donation and transplantation. If you see a for another. They live their own lives, isolate negative story in the newspaper about themselves from many of the pressing needs in donation, don't wait for someone else to do the community by walking a narrow road. something. You are important because you Imagine being thrown into a situation where are a living example of the great good that your loved one has died and you alone can can result from someone making the life- make the decision to directly impact the life of saving decision to donate organs. Don't let one or more unknown members of the human negative folks leave their message out community! Opportunities like these are rare there. You have the joy and the optimism and present an individual with one chance to to prevail. Write! make a life-altering decision. It is moments such as these that can profoundly change a person's There is a bill in Congress to help recipients life. get coverage for their immunosuppressant medications beyond three years. The House People like to believe in a greater good, to be of Representatives passed the bill; the around others who are optimistic, generous, senate has not taken action. Get involved! joyous. Agreeing to donate organs, saving and Don’t wait for someone else—do it now! restoring others’ lives, allows one to enter that Write to your senators or call their offices. joyous place, to feel optimism, to experience generosity. In addition to acting as a role model, Continued on page 19

18 Transplant Chronicles, Vol. 7, No. 3 Two Very Special People Michael and Mike by Donna J. Manor

M y son, Michael, was born with damaged donor. In fact, Mike says that he thinks God was kidneys due to a posterior urethral valve. preparing him for this transplant since high We knew at some point he would require a kidney school. I thank God for my husband and son and transplant. We assumed it would be around age feel very grateful that my son was able to be thirteen. At age ten, however, he received a kidney transplanted with a kidney from a living-related from his dad, Mike. donor.

Michael did not have the average I am also very grateful for the kidney transplant. His surgery opportunities that have opened up lasted almost thirteen hours. In for Michael since his transplant. He addition to the transplant, he had attended kidney camp this year in bladder augmentation, removal of Nashville, Tennessee, and we are both kidneys and “installation” of a making plans to attend the 2000 mitrofanoff which is for self- Transplant Games in Lake Buena catheterization. My husband and Vista, Florida. Since the transplant, son were in two different hospitals Michael is not allowed to play and the kidney had to be contact sports and this seemed like transported across a busy city a negative at first. However, when street, which concerned me greatly. God closes one door, He always Everything went smoothly, however, opens another, and the Transplant and Michael and Mike are doing Games is the door He opened for very well. Michael. Mike Manor donated his kidney to his son, Michael, I would like to say that Michael Transplantation has opened up a whose story is on page 20. and Mike are two very special people. whole new world to us. We feel like Mike has lifted weights since high we have been adopted into a great school and was the perfect candidate for Michael’s T big wonderful family. C

Transplant Recipients… continued from page 18

This is a RECIPIENT issue. OPOs and THIS HOLIDAY SEASON transplant centers are busy doing their work. They want to do everything for everyone and will try to help—however, this is one thing that affects recipients directly. Write your representative and others, too! GIVE THE Call them. Make them listen. While this does not necessarily make one an GIFT OF ambassador for donation, it frees up transplant professionals to do their work. Thank your God that there is enough love in LIFESIGN A DONOR CARD TODAY. this world for the thousands who give, the For more information and a free donor card call: thousands who receive, and the thousands 1-800-622-9010 who coordinate these miracles to make it A gift of Life Initiative of the

T National Kidney Foundation® work. C

Transplant Chronicles, Vol. 7, No. 3 19 My Experience at Camp Okawehna K i d s by Michael Manor My name is Michael Manor and I had a bingo I won two spiders, a whoopie o kidney transplant on December 3, 1998. cushion and a pencil. My dad gave me one of his kidneys. The first day we had pizza for r In June of 1999 I was invited to supper. We swam a lot. The Army go to “kidney camp” near flew in their helicopters and let Nashville, Tennessee. Me and a us get in. n bunch of other kids who either had a kidney Some of us put on skits transplant or were on and ours was so funny! I was e dialysis met in Memphis, Dr. Kid and my friend was Tennessee, and went in a Dr. Ney. Kidney. Get it? My van to Camp Okawehna. friend Carmichael was the student doctor, Dr. Wiz. r This was my first time away from home by myself It was very hot at camp and it was a blast! I could and I got two ticks on me do whatever I wanted and I while walking through the didn’t have to listen to my woods to my cabin. parents telling me what to do. If you have had a kidney I met lots of new friends. We transplant, I would recommend had a prom and a dance. If we didn’t that you go to Camp Okawehna. I want to go to the prom or the Michael Manor hope I can go there again next T dance we could play bingo. At summer. C

The National Kidney Foundation recognizes the significant contributions made by Novartis Pharmaceuticals Corporation to transplant recipients around the country through its sponsorship of the following NKF programs: 2000 U.S. Transplant Games; Transplant Chronicles; and transAction Council programs.

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