Transplant Chronicles

Volume 5 A publication for transplant recipients of all organs and their families, Number 1 published by the National Kidney Foundation, Inc.

When we walked inside the Writing to Your Donor Family Shrivers’ lovely home, we were greeted by a room full of Doug’s Is a Special Experience family members. It was wonderful to meet his 12-year- by Faith Taylor old daughter, Jodi. We all sat together and enjoyed watching family videos of Doug working with his father on the farm and helping Jodi find eggs during the family’s Easter egg hunt. My mother and I enjoyed hearing about the many practical jokes Doug loved to pull on his mother. I felt proud to know that my donor was such a handsome, strong and witty young man who cared about others and was such a great help to his father. And I felt blessed to meet such a Left to right: Paul Shriver, Faith Taylor, Dorothy Shriver, loving and close family. Doug’s Doug’s daughter, Jodi, and a feline friend sister, Karen, invited my family to the Shriver family picnic. “You are now a part of our M y mother, Barbara, and It was a special and unique family,” is how she put it. I recently made the three-hour experience to see where my The Shrivers have missed trip to Gettysburg, Pennsylvania, donor lived and meet the people Doug ever since he was killed in where we were warmly closest to him. When we arrived, an automobile accident in July welcomed into the home of Paul my first view was of a beautiful 1992, but they find comfort in and Dorothy Shriver, the farm with fields that went as far knowing that many lives have parents of Doug Shriver, my as my eyes could see. I thought been saved and blessed because organ donor. We spent the day of Doug working with his father he was an organ donor. with Doug’s parents and many in these fields and how much he other Shriver family members. is missed now. Continued on page 4 transAction! Transplant Chronicles is a COUNCIL Program of the National Kidney Foundation, Inc., supported by Sandoz Transplant, a division of Novartis Pharmaceuticals Corporation. National Kidney Foundation® editor's desk ✍ Transplant Chronicles National Organ and Tissue Donation Awareness Transplant Chronicles is published by Week has come and gone. It the National Kidney Foundation, Inc. is a time when I reflect on Opinions expressed in this publication do not necessarily represent the the changes that have position of the National Kidney Foundation, Inc.

occurred in the area of organ Editor-in-Chief: donation during the past Beverly Kirkpatrick, LSW several years. After 17 years Philadelphia, Pennsylvania of working in the Beverly Kirkpatrick Editors: transplantation field, I still Ira D. Davis, MD Vanessa Underwood, BS, find myself filled with feelings of disappointment Cleveland, Ohio AFAA, ACE Plaistow, New Hampshire when I think about the small increase in donation Maurie Ferriter, BS Lakeland, Michigan Jim Warren, MS and sadness for the many who die while waiting for Arlington, Virginia Cheryl Jacobs, LICSW their second chance. Minneapolis, Minnesota Laurel Williams, RN, MSN Omaha, Nebraska Linda W. Moore, RD, LDN This week in Philadelphia, a nine-year-old girl Memphis, Tennessee R. Patrick Wood, MD Houston, Texas named Sarah died before a donor heart could be Teresa Shafer, RN, found. Sarah should not have been denied her MSN, CPTC second chance, nor should the many others who Ft. Worth, Texas Editorial Office: await an organ. As transplant recipients, friends National Kidney Foundation, Inc. and family, I urge you to get involved with organ 30 E. 33rd Street, New York, NY 10016 (800) 622-9010/(212) 889-2210 donation promotion so that all of the Sarahs of the http://www.kidney.org world will live on and our disappointments will Executive Editor: Editorial Director: change to joyous amazement. For more on getting Diane Goetz Gigi Politoski involved, see Robert Gruenenfelder’s “Messengers Managing Editor: Editorial Manager: Sara Kosowsky Gary Green of Life” on page five. T C Design Director: Production Manager: Beverly Kirkpatrick Oumaya Abi-Saab Torey Marcus for the Editorial Board 1998 U.S. Summer Transplant Games Site Announced

olumbus, Ohio, has been selected as the site “At the same time,” she for Cthe 1998 U.S. Summer Transplant Games, the continues, “the spirited National Kidney Foundation announced in competition calls attention February. Sandoz Transplant, a division of to the vital need for more in this Novartis Pharmaceuticals Corporation, was named country and pays respect to the unselfish gift from primary sponsor of the event. the families of organ donors.” The Games, which are scheduled for August 5-8, Hank Rosenzweig, chairman of the NKF’s 1998, will be held at the athletic facilities of Ohio Transplant Games Committee, says that the State University (OSU). The event features more commitment and cooperation of local government than a dozen sports, including , , swim- and local host organizations’ personnel, in ming, cycling, basketball and track and field, and is addition to ample athletic facilities and excellent open to individuals of all ages who have received a climate, were significant factors in selecting life-saving solid organ transplant (heart, lung, liver, Columbus as the 1998 Games site. OSU’s kidney, pancreas) or a bone marrow transplant. housing facilities will serve as lodging for the athletes and their families. “The U.S. Transplant Games provide an excellent form of rehabilitation for transplant Attendance for the 1998 Games is expected to patients and the opportunity to generate surpass the record-breaking participation in the awareness of the tremendous success of 1996 U.S. Summer Transplant Games of 1,200 transplant surgery,” says Wendy Brown, MD, transplant athletes, who ranged in age from 3 to chairman of the NKF. “Transplant recipients who 77. The Olympic-style athletic competition has participate in the Games dramatically illustrate been organized biennially by the NKF since T the power of organ donation to restore life. 1990. C

2 Transplant Chronicles, Vol. 5, No. 1 The Essence of Life by Vanessa Underwood, BS, AFAA, ACE

As I write this, it is National Organ and Tissue Donation Awareness Week. I feel compelled to dedicate this writing to all donors, especially to my own.

On November 21, 1996, organ donation took if she were here, she would say, “I do live on, on an even more profound and startling meaning with you, in you and through you!” It’s a miracle for me, but it was also the saddest day of my life. that the sadness of death can transform into a On this unforgettable day I lost my donor, my bittersweet joy for those who grieve over loss and confidant, my teacher, my best friend—my those who receive a second chance at life. In my mother. case, I am experiencing both.

Often, I have thought about the gratitude that I have been blessed, as have all recipients, recipients feel toward their unknown donors and donors and donor families. I cherish the love of the hopeless feeling that they may never know my mother and of my sister, Grace (who also anything about the person who has given them a donated an organ to me), for their gifts of life to second chance at life. I have thought about the me. To all the donors and donor families, I thank donor families and the pain they feel after losing you from the very depth of my heart. their beloved. I have thought about the unselfish, altruistic gift of life. Despite these thoughts, I The passing of my mother has become another don’t think I ever could have clearly understood stepping stone in my life—another level at which the feelings of these recipients and donor I try to understand. When I think of her and “our families, as I had a living-related donor who was transplant,” I have a deeper understanding of the always with me. She was a donor I could kiss entire experience. Although I grieve and my pain and hug and thank. But now it’s different. is intense, I smile, knowing that she is truly a part of me. I pray that all donor families can find My mother, who I could never have thanked this sense of peace and well-being, and that the enough and who certainly found her thanks in smile will return to their faces, as life continues T seeing me healthy, is now gone from this world. because of them and their loved ones. C So many things take on different meanings now.

Now I understand! She lives on! When said in this context, it is so much more profound than when we normally say, “She lives on through you!” to someone grieving over the death of a loved one. In all my pain and grief, I think about life and its meaning. Somewhere underneath the tears and the sorrow I found that flicker of hope, the twinkle of light. I realize that I hold the essence of my mother and her life right here in me and through me. What a peaceful feeling to know that she is truly a part of me, not just emotionally and spiritually, but physically, too.

My mother brought me into this world and she Vanessa (middle) cherishes the love of her mother, taught her lessons with pride and love. I am Caroline Freije (left), and sister, Grace Freije, both of everything I am because she loved me. When my whom donated kidneys to Vanessa. life was threatened she gave me life again. Now,

Transplant Chronicles, Vol. 5, No. 1 3 Organ and Tissue Recipients… Continued from page 1 Miracles by Faith Taylor Two days after he died, Doug’s pancreas and one of his kidneys took over for my failing pancreas The greatest miracle happened nearly 2,000 and kidneys. His pancreas has produced the years ago. perfect amount of insulin, allowing me to end my of God is eternal life through Jesus daily insulin shots. His kidney has purified my Christ, our Lord. blood and kept me off dialysis for more than four years. Another miracle happened nearly five years The Shrivers would love to hear from others who ago. received Doug’s organs, but so far, they have not. The gift of organ donation from Douglas It is so important for us, as organ recipients, to Shriver still lives on in his recipients. write to our donor families. Of course, this is done anonymously and the names of both parties are Doug’s heart and liver saved two lives. not released unless both agree that they want it to One of his corneas restored sight to a blind happen. If you are blessed to be an organ or tissue woman. recipient, please contact your local organ One of his kidneys freed a man from years of procurement organization when you are ready to dialysis. write to your donor family. His other kidney freed me from dialysis and Faith Taylor lives in Horsham, Pennsylvania. In his pancreas freed me from daily insulin T T shots and probable blindness. C her spare time, she loves to draw. C

Organ Donation Support an Organ Donation Stamp

Four years ago, kidney Southwest Michigan, is Nine months later, the U.S. transplant recipient Ed Heyn determined to make the organ Postal Service sent him a letter sparked a petition drive to donation stamp a reality. thanking him for his “support convince the U.S. Postal Service Members are asking you to for the issuance of a that a postage stamp honoring send more signed petitions to commemorative stamp that organ donation would help the U.S. Postal Service. would create awareness of increase the number of people organ donation.” The stamp is who sign organ donor cards. Ed One person who is carrying once again before the Citizens’ collected nearly 250,000 on Ed’s hard work is Tony Stamp Advisory Committee. signatures from all 50 states Papa, a postal employee from and 12 countries, in support of Pennsylvania. Tony says that If you are interested in the stamp. despite the fact that the becoming involved with the signature total has risen to postage stamp campaign, you Before his goal could be 400,000, the Citizens’ Stamp may obtain more information reached, Ed died. He left Advisory Committee has voted from Gary Rouse, of Organ behind family and many against the organ donor Transplants of Southwest friends, and the world of awareness stamp twice in the Michigan, at (613) 423-6450. transplantation lost one of its past 12 years. Still, Tony is not Get involved in raising organ most loyal and colorful letting this stop him. In March donation awareness. Your supporters. Although he died, 1996, he solicited letters to be support of a “Gift of Life” Ed’s vision and work continue. sent to Postmaster General postage stamp is a great way to T The support group that he co- Marvin Runyon, on behalf of do so. C founded, Organ Transplants of everyone awaiting a transplant.

4 Transplant Chronicles, Vol. 5, No. 1 Messengers of Life by Robert Gruenenfelder, RN, CPTC

As organizations (OPOs) organization’s mission becomes obvious evolve, the role that volunteers play in the to the public. Organ and tissue recipient development of successful organ and tissue volunteers are not only recipients of organs, but donation programs cannot be underestimated. recipients of the core value of being human, the ability to give and love. Most volunteers are either donor family members or organ transplant recipients. Giving The role of volunteers in an OPO’s mission is at a time when they are grieving over the loss of important to me for two reasons. First, as a a loved one makes donor families the critical director of an organ donation program in links to transplantation for those who wait. For western Texas, and, historically, in my role as donation programs to continue to grow, we must an organ procurement coordinator, I have been recognize that donor families are the special working to increase awareness about organ and individuals who we really serve. Without such tissue donation during my career. Second, and families, donation and transplantation would not perhaps more important, in March 1996, I exist on the scale that it does. OPOs that started to tell my experience as a donor family provide a forum for these individuals to be heard member. I learned that as donor families we will be richly rewarded with insights that can have a need to talk about our unique experience only be gained by those who have experienced and share our loved one with everyone. This not the peace that can be achieved by donation only helps us deal with our loss, but also following the loss of a family member. I increases awareness about organ and tissue personally have learned more about how to donation. Whatever the motivation, career or request organs and the consent process from donor family experience, the mission has donor families than from any other source since endured and the community has been served. entering the field of organ donation and It has been said that by the year 2000, one- transplantation. Many other organ procurement third of the U.S. population will know someone professionals would agree with me. who has been involved with organ donation or The second group of volunteers is . If OPOs can capture the life transplant recipients. Many of you have a experiences and talents of even a fraction of this renewed outlook on life after experiencing not group, an end to or at least an easing of the only a life-threatening illness, but also the organ shortage may be in sight. After all, who uncertainty of whether or not you would receive will move the community to action—the organ an organ. This new outlook often leads to a new procurement organization or Bob Smith from set of priorities, like living life to its fullest and down the street? expressing thankful sentiments for this new Robert Gruenenfelder, RN, CPTC, is the manag- hope. By involving positive and appreciative ing director of the West Texas region of Life Gift. T people in an OPO’s volunteer program, the C

transAction Council to Meet at Annual Meeting The first open an Impact?” as well as a panel discussion on transAction! membership stress management, sexuality, nutrition and COUNCIL meeting of the family issues. Aron Eisenberg, a kidney transAction Council transplant recipient who plays Nog on “Star will be held October 31 - November 1, 1997, Trek: Deep Space Nine,” will also speak at the during the National Kidney Foundation’s meeting. Annual Meeting in San Antonio, Texas. Registration information will be sent to all The meeting will feature sessions for all organ members of the transAction Council. For recipients, including “Medications: Friend and membership information, contact Gary Green Foe”; “Healthy Lifestyles”; “Financial Issues”; at (800) 622-9010, or join online at T and “Presence in Presentation: Are You Making http://www.kidney.org. Membership is free. C

Transplant Chronicles, Vol. 5, No. 1 5 Rehabilitation: What’s the Big Deal? by Maurie Ferriter, BS

For part two of Transplant Chronicles’ five-part decisions and required us to weigh all of the rehabilitation series, Maurie Ferriter, a kidney potential consequences: Should I stop working or transplant recipient from Lakeland, Michigan, take a medical leave, and how will that affect my discusses why transplant recipients need family financially? Should we stay here or move vocational and functional rehabilitation. in with or close to my parents because of the demands of living with chronic illness? For people in need of a kidney transplant, the “Rehabilitation” is a word we are hearing a decision to ask a family member for a kidney is a lot lately. Rehabilitation means the restoration of tough one. the whole person. Our bodies need to recover from the shock of a major surgery like Now that we have a successful transplant, it is transplantation. That may seem obvious, but important for us to recover as much of our what we need to do in the long run with our “normal” lives as possible. This is not only bodies and with our lives is not as obvious. important for us as transplant recipients, but Some of us were very ill for a long period of time also for our families and friends. We need to before our transplant, and we became used to a maximize our rehabilitation so that we can have low level of activity. Now, even with newfound the best quality of life possible. For some, this energy and a new lease on life, many people are means changing our previous goals for a tempted to stay stuck in their old habits. This “normal” life. For others, this means getting back makes both vocational rehabilitation and to goals we had before we needed a transplant. functional rehabilitation important. ✮ Why Rehabilitation? Survival of the Vocational rehabilitation has to do with System employment. Many of you will return to your former job; others will need training or more We are products of the system that paid for education so that you can perform another job. our care and our transplants. Medicare, Young people may be looking for their first job. It Medicaid, SSI and SSDI, among others, are part may mean full- or part-time employment. of this system. We are also products of a system that promotes education about organ donation Functional rehabilitation means returning and the great things that transplants do for us. yourself to a fulfilling, productive life. This does We have a responsibility to our donor families to not always mean employment. For some of you, make the most of the gift they gave us. this may mean volunteering your time to a worthy cause or organization. For others, this There are many people at the state and federal can mean taking back a part of your life you had government levels who analyze the costs of to give up while waiting for a transplant, such as continuing to pay for organ transplants and raising your young children at home instead of funding the disability system. We must show sending them to a relative’s house or a day care them that we are striving to reach our potential center. after transplantation. We can reach this potential through rehabilitation. If we don’t do this, the ✮ Why Rehabilitation? Quality of Life people who need transplants or access to the disability system for short periods of time in the All of us have had to make adaptations or future may not have the same opportunities we trade-offs in our lives because we had a chronic have now. This could also affect us. Transplants illness that required a transplant. Some of the don’t always last forever. We may be in need of trade-offs we made we did not think twice about another one someday, and we will need access to because there weren’t many alternatives. We had the system again. So let’s do our part now to T to take medications and keep endless medical ensure it is around in the future. C appointments. Some, however, were major life

6 Transplant Chronicles, Vol. 5, No. 1 On the Road Again—How to Travel with a Transplant by Cheryl Jacobs, LICSW

ne of the many pleasures and supply, and understand how you will be billed. conveniencesO of receiving a transplant is having Mail-order pharmacies may be able to ship them the ability to travel comfortably again. Whether to you at your travel destination(s). you travel for work or pleasure—upcoming √ summer vacations, the World Transplant Games Bring an emergency allergy kit if you have in Australia or the possibility of spontaneous allergies. travel (considering the occasional airfare price √ If you’re diabetic, bring glucagon and wars)—there are some things you should always diabetic supplies so you can make a quick remember before you leave. adjustment if necessary. √ Pack any relevant medical records or √ Bring bottled water to keep you hydrated. In identifying information, including a list of daily some countries, you should only drink bottled medication, allergies and the names and phone water. numbers of your physician, transplant center and family members. A medical ID bracelet can √ Inform your travel agent, airline carrier and be purchased at a nominal fee from most final accommodations in advance if you have National Kidney Foundation Affiliates. any special dietary requirements. You should also tell them if you have any special needs √ Inform your health care team of your travels during your travels so they can plan for and where you can be reached if you will be appropriate assistance, transportation and away for an extended period of time. Complete seating arrangements. any routine checkups or blood work prior to your departure. Finish any √ You may want to ask your agent tests or specialist consultations before about travel insurance in the unlikely you leave. Obtain the names of event that you might need to cancel or physicians or transplant centers nearby change your travel plans. your travel destination in case you need a contact during your time away. Your √ Surf the World Wide Web if you, transplant center may be familiar with your family, friends or travel agent professionals wherever you’re visiting. have access to a computer and the Web. It’s amazing how much information you can find on √ If appropriate, obtain proper vaccinations for the Web about destinations, accommodations, your travels before you leave the country. Ask restaurants and activities. your physician or consult a local travel clinic for the vaccinations that are required for certain The Web has information for travelers with countries; make sure they know that you are a disabilities about vacations such as safaris and transplant recipient. Some vaccinations need to raft trips. These Web sites can help travelers with be given a long time before you travel in order to disabilities plan a hassle-free and fun vacation. be effective. Disability Travel Services (http://www.dts.org) may be a good place to begin the search. Access- √ Keep your medications with you, not packed Able Travel Source (http://www.access-able.com) in luggage that will be checked. Your flight(s) and the Society for the Advancement of Travel for could get delayed, or your luggage could get lost. the Handicapped (http://www.travelagency.com/ Your traveling buddy or strangers may have page12.html) are other sites worth a look. aspirin, but it’s highly unlikely they will have anti-rejection medicines. You will find that the extra effort that you put into planning your next trip will be worth it. If you’re away for an extended period of time, T Happy trails. C make sure that you will be able to replenish your

Transplant Chronicles, Vol. 5, No. 1 7 The Grievance Process by Peggy Janssen

What Is a Grievance? What Role Do the Renal Networks Play in the Grievance Process? A grievance, for individuals with kidney failure, is a problem concerning the services that they Each renal network is under contract with the receive related to treatment for end stage renal Health Care Financing Administration (HCFA) to disease (ESRD). You may be concerned with the fulfill a set of defined requirements in its specific quality of the care you are receiving, your access geographic area. These requirements mandate to care or the difficulty you are having communi- each network to be active in the following areas: cating with a member of the health care team. quality improvement, grievance resolution, vocational rehabilitation, information sharing and How Do I Express My Concerns? management of provider and patient information. All networks have a grievance process, which A grievance or concern can be resolved enables you to voice your concerns about informally, through discussion, or formally, using services for ESRD directly to an objective third the unit’s or facility’s grievance procedure. party. You or your representative can file a grievance without restraint, interference and fear The Informal Process of discrimination or reprisal. All grievances are confidential and they must be in writing. The You can talk to the network can perform one of transplant coordinator and three roles: investigator, work out a solution to a given “It is essential that you facilitator/coordinator or problem, or you can request a referral agent. You will be health care team meeting to are an informed and notified of the outcome in discuss the issue. It is active participant in your writing. essential that you are an Editor’s note: This article informed and active health care.” was written for people with participant in your health kidney failure who receive care. If your concern is not dialysis or have had a kidney resolved to your satisfaction, you may use the transplant. People with other kinds of organ unit’s or facility’s grievance procedure or report transplants should file any grievances with their the problem to your local renal network. local peer review organizations (PRO). PROs only investigate complaints from people with Medicare, Unit Grievance Procedure and there is a PRO in every state. PROs mainly focus on what happens in a hospital; however, You may need to submit your concern in they will pursue quality-of-care complaints from writing to file a formal grievance. The grievance people treated in an outpatient setting. procedure will define the process, including the delegation of responsibility and timelines. You There are several ways to locate the PRO in can get a copy of the grievance procedure from your area. You can find a listing in the back of your social worker or transplant coordinator. your Medicare Handbook, or call the insurance When you write your grievance, it is important to carrier listed on the explanation of benefits (EOB) be clear and concise. Briefly state the facts— form you receive from Medicare. Ask the insurance when, where, who, what. You may include what carrier for the local PRO phone number, or call the you feel should be done to resolve the issue. Most Health Care Financing Administration (HCFA) at issues can be resolved with the dialysis or (800) 638-6833. You should be given a one-page transplant center using either the formal or the flyer, titled "Important Message from Medicare," informal process; however, if the response to your when you are admitted to a hospital. This flyer grievance is not satisfactory to you, you may should contain information telling you how to report your concern to your local renal network. contact your local PRO. Peggy Janssen is the consumer services coordinator for ESRD Network Eleven in St. Paul, T Minnesota. C

8 Transplant Chronicles, Vol. 5, No. 1 Transplant News Digest

From the editors of Transplant News Administration Proposes 18-Fold Increase in HRSA; 1998 Fiscal Year Budget to Address Donor Shortage by Jim Warren, editor and publisher

While the transplant community wrangles number of donors. There are now approximately publicly about organ allocation policies in the 50,000 people on the national waiting list for U.S., the Clinton administration has indicated it organs. In 1995, there were approximately 5,300 has been listening to experts who say the biggest donors. Approximately 3,500 people died in 1995 problem is a lack of organ donors by seeking the waiting for an organ. Although federal funding largest single budget increase for organ for organ transplantation has not changed, procurement and transplantation since the organ donation from cadaveric donors has program was established in the mid-1980s. increased by 30 percent since 1995. Unfortunately, this increase is not nearly In its annual budget for the 1998 fiscal year, sufficient to meet the need. Moreover, it is still the Clinton administration is requesting an only about 50 percent of the potential donors. appropriation of $3,891,000 for the organ The waiting list increased by almost 20 percent procurement and transplant program of the in 1995 alone. Health Resources and Services Administration (HRSA). This includes a whopping increase of “The major factors influencing organ donation $1.6 million, all of which is specifically are public and professional awareness and earmarked for public and professional education education. Therefore, there is a critical need to programs designed to increase the number of (1) increase organ donation, (2) standardize the cadaveric organ donors. process of donation, and when donation occurs, (3) to improve the speed at which organs are To understand the magnitude of the allocated. appropriation request, consider the following: the HRSA’s Division of Transplantation (DOT) “In order to increase the number of cadaveric has $88,000 to spend on donor awareness organ donors, an increased organ donation programs; and the $1.6 million request is almost public and professional education effort is three times the amount HRSA grants annually to required. Four activities that would be funded by the United Network for Organ Sharing (UNOS) to the increase in the FY [fiscal year] 1998 request operate the Organ Procurement and Transplant are: Network (OPTN). •“Review high and low performing organ It is important to note that what the procurement organizations (OPOs) to identify administration requests and what is ultimately successful strategies for influencing hospital appropriated by Congress can differ markedly; staff to become more knowledgeable about and however, the request for increased funding in a more committed to donation. The objective is to time of overall budget cutbacks indicates that ensure that families of all potential donors are the administration is serious about recognizing asked whether they will donate. Currently, about the problems caused by the lack of organ and one-third of potential donor families are not even tissue donors. asked to donate because hospital staff are not committed to donation or have an unwarranted In its rationale for the budget request to apprehension about the request process. Congress, the administration observes: •“Develop and implement three public “The major gap in organ transplantation today education programs that target key professions is the large difference between the number of that can potentially affect donation; i.e., people who need organs for transplant and the attorneys, funeral directors, clergymen.

Transplant Chronicles, Vol. 5, No. 1 9 •“Develop, test and disseminate a curriculum is scheduled to report back to President Clinton for grades K-12 (nationally) and provide technical in about 90 days, the Washington Post reported. assistance for its implementation. HRSA, with its contractor, the United Network for Organ Sharing, has already successfully developed two One-Year and Patient Survival on the organ transplantation and donation curricula for Rise Since 1988, According to UNOS medical schools and nursing schools. One-year graft and patient survival rates have •“Conduct 10-15 roll-out workshops in increased annually since 1988, according to different regions of the U.S., based on the College UNOS’ Annual Report for 1996. Unfortunately, Campus Project. This is a multi-faceted project according to the same report, the waiting list for designed to encourage organ donation awareness a donor organ nearly tripled during the same among college students and faculty. The objective time period. is national implementation.” For the first time, the UNOS report contains data on five-year graft and patient survival rates; Scottish Researchers Report Successful Cloning previous reports had tracked the rates only of a Sheep; Clinton Calls for Bioethics during three-year periods. The five-year patient Commission Study survival rates range from 80.6 percent for kidney recipients to 41.4 percent for heart-lung The announcement on February 14 that recipients. researchers in Scotland have successfully cloned an adult mammal for the first time, produced While the bad news was the tremendous both positive and negative reactions that promise increase in patients on the waiting list—43,983 to impact the field of transplantation for a long in early 1995 compared with 16,026 in 1988— time. the good news was a nearly 30 percent increase in the number of minority cadaveric donors. The The Scottish research team, led by Dr. Ian level increased from 16 percent in 1988 to 23 Wilmut, an embryologist at the Roslin Institute in percent in 1995. Edinburgh, created a lamb—named Dolly—using DNA from an adult sheep. The researchers were Despite the increase in the number of donors, adamant in explaining that the goal of the minority registrants—particularly blacks— experiment was not to clone humans but to continue to wait longer for kidney transplants create large herds of genetically engineered farm than whites, the report found. The reason for the animals that could, among other things, contain disparity, UNOS reported, includes differential “humanized” organs suitable for human ABO blood group distribution, higher positive transplantation. cross-match rates for minorities and the rarity of certain HLA antigens among blacks compared Much of the debate has centered on the ethics with whites, who constituted 77 percent of the and brave new world of successful cloning. The cadaveric donor pool in 1995. Washington Post reported that President Clinton has ordered the 18-member National Bioethics Here are some of the other findings contained Advisory Commission to consider whether in the report: “federal policies relating to human embryo research should be reconsidered” in light of the •Living donors: The number of living donors development. increased 74 percent between 1988 (1,825) and 1995 (3,180). In addition, the number of Among the commission’s duties is to study unrelated living donors nearly tripled during the whether privately funded human embryo period, from four percent to 11 percent of the research in the U.S., which is legal and largely living donor total. unregulated, should be more “sensitive” to the ban, which exists on such studies being •Donor age: The number of older cadaveric conducted by federally funded researchers. donors (defined as donors over 50 years of age) increased from 12 percent in 1988 to 24 percent The commission was created by an executive in 1995. Correspondingly, the younger donor order in October 1995 and includes experts in pool—donors who are 18 to 34 years of age— medicine, science, ethics, theology and the law. It 10 Transplant Chronicles, Vol. 5, No. 1 decreased from 41 percent of donors in 1988 to those with the most critical need, UNOS reports. 29 percent in 1995. UNOS attributed the In 1995, 50 percent of liver registrants who changes to fewer motor vehicle accidents and went on and off the waiting list as Status 1 had safer automobiles—thereby reducing the number a median waiting time of only four days. of deaths of more youthful drivers and their Approximately 50 percent of registrants who passengers—as well as improved technologies went on and off the waiting list as either Status that make older organs more viable. 1 or Status 2 had a median waiting time of less than 30 days. This compares to an overall 254- •Improved one-year patient survival rates: day national median waiting time for liver cadaveric donor kidney—94.1 percent in 1994, patients of all four status codes. In 1995, 50 compared with 92.2 percent in 1988; living percent of registrants who went on and off the donor kidney—97.8 percent in 1994, compared heart waiting list as Status 1 had a median with 96.7 percent in 1988; liver—83.9 percent in waiting time of 40 days. This compares to an 1994, compared with 77.1 percent in 1988; overall national median waiting time for all heart pancreas—91.4 percent in 1994, compared with registrants (Status codes 1 and 2) of 213 days. 86.9 percent in 1988; heart—85 percent in 1994, compared with 82 percent in 1988; lung—76 For the first time, UNOS is making a 30-page percent in 1994, compared with 47 percent in booklet featuring data highlights available to the 1988; and heart-lung—74.2 percent in 1994, general public at no charge. To obtain a copy compared with 52.4 percent in 1988. call (804) 327-1432. The 1996 Annual Report is also posted on the UNOS Web site at •Waiting times: Waiting times for heart and http://www.unos.org. For more information, liver patients appear to be relatively short for contact Joel Newman at (804) 327-1432.

COMMENTARY willingness to take the steps in-the-sand legislative policy necessary to rectify the can no longer be tolerated. by Jim Warren, editor & situation. publisher, Transplant News Here is a list of legislative For the past three years, I accomplishments achieved in When the Clinton have annually called upon the 1996: Administration announced that major transplant groups to: it is requesting $1,687,000 for form a legislative coalition, 1. The Organ Donation the 1998 fiscal year for public agree to a list of legislative Insert Act will result in and professional education goals in order of importance information about organ and programs designed to increase and implement a systematic tissue donation being sent to the number of organ and approach to achieve those approximately 70 million U.S. tissue donors, one veteran goals. Unfortunately, this call taxpayers. transplantation community to action has continually fallen observer told me, “If the on deaf ears. Waiting any Here is a list of three transplant community is longer could be a serious blow important things that did not smart, it will begin right now to to transplantation. Each year, get accomplished in 1996: ensure that the increase is not the stakes have gotten a little a one-shot deal, but will higher, as has the public 1. The National Organ remain in the budget for years profile of transplantation. Transplant Act was not to come.” reauthorized. The act has not When you consider the been reauthorized since 1990, Sage advice, of course. But major issues that will continue mainly because of the politics there’s one little problem. to be discussed for surrounding the number of When it comes to being years—organ allocation, transplant programs, organ effective in the Washington , cloning, procurement organization turf legislative and regulatory gene therapy, cell therapy, wars and the almost arena, the transplant organ commerce—it can be pathological struggle of the community has virtually no argued that transplantation is United Network for Organ clout and has shown no at a crossroads, and the head- Sharing (UNOS) against even

Transplant Chronicles, Vol. 5, No. 1 11 COMMENTARY ad hoc member. The Coalition immediately. The NKF and Eye Continued can be UNOS’ biggest Bank Association of America benefactor on Capitol Hill. learned long ago that a two- the most minimal regulatory year presidency (or chairman- oversight by the government. 2. Develop a legislative ship) is monumentally more These have left lawmakers agenda. The first action of the effective than a one-year term. unwilling to address the issue coalition should be to arrive at until the transplant community a consensus on an achievable By the end of the first year achieves consensus on what it legislative agenda. I rank the new president is just wants. reauthorization of the National beginning to understand the Transplant Act and an complexities of Washington and 2. Legislation calling for extension of the 1998 fiscal develop a presence (and an unlimited Medicare coverage of year budget appropriation agenda) on Capitol Hill when immunosuppressive drugs, earmarked to increase the term ends. The same introduced by Rep. Charles donation as top priorities. process then begins anew with Canaday (R-FL), went nowhere. the next president. A two-year Aggressively supporting this 3. Develop a legislative term creates more continuity bill, even with a limited chance strategy. Models do exist. The and allows the organization’s of passage at this time, is a no- NKF, which is opening a paid staff to provide much brainer for the transplant Washington legislative office, more effective support. Those community. At the very least it played a principle role with who argue that such a could result in extending the physician organizations like commitment takes up too three-year coverage provided the American Society of much of the individual’s time now to five or six years. I saw Nephrology to craft successful away from running his or her no support for the bill in 1996. legislation for dealing with end own organization are wrong. By stage renal disease issues in allowing for what is essentially 3. Neither legislation the late 1970s. a six-year involvement—two as addressing rehabilitation president-elect, two as past- programs nor lifetime health 4. ASTP and ASTS should president, in addition to two as insurance caps for transplant merge as soon as possible into president—many of the duties recipients was introduced. one organization. With such can be delegated to equally issues as cloning, share the burden. Here are some modest xenotransplantation, managed suggestions for addressing care, Medicare physician 6. AOPO and ACORD current and future legislative payment system changes and (American Congress for Organ and regulatory issues. new immunosuppressive drugs Recovery and Donation) must on the horizon, the organiza- reconcile. To be effective in 1. Create a Coalition on tions can no longer afford to Washington, the 63 OPOs must Legislation. The move should function as separate entities speak with a unified voice to be led by the American with separate Washington best serve their members. Association of Transplant representatives. They need to Physicians and Surgeons merge into one organization With transplantation issues (ASTP and ASTS); the National and open a Washington office often seemingly dominating the Kidney Foundation (NKF); the with paid full-time staff medical scene, the first Transplant Recipients members. transplant surgeon in history International Organization in the Senate (Sen. Bill Frist (TRIO), the NKF’s transAction 5. Presidents of all national (R-TN)), a proposed budget Council or another recipient transplant organizations increase and a sheep named group; and the Association of should have two-year terms. Dolly making headlines, it is Organ Procurement Because of the increasing time for the transplant Organizations (AOPO). Because number and complexity of community to get its legislative of its status as a government legislative and regulatory act together and bring it to issues, ASTP, ASTS, UNOS, T contractor, UNOS is not Capitol Hill. C included on the list, but AOPO, TRIO and NATCO should play a major role as an should take this action

12 Transplant Chronicles, Vol. 5, No. 1 Planning Ahead for the Inevitable by R. Patrick Wood, MD, FACS, and Mary Claire Mahoney, RN, BSPHN, MS

Fear of Dying: Patients express a number of any people do not wish to speak about fears as they approach the end of life. They death,M but no one can deny it is inevitable. For should openly discuss these fears with their loved patients facing heart or , the ones, next of kin or those who will be asked to prospect of an illness-related death is very real. advocate at the time of death. Obviously, many Transplantation offers a new lease on life, but no people fear the end of their life, but beyond that, matter how successful, death eventually comes. many patients fear a loss of dignity as they lay dying, especially in a hospital. Patients also fear As a liver transplant surgeon and a hospice losing control as they become unable to have nurse, we speak from experience when we say input into their own medical care. The fear of that those families that have clearly addressed losing humanity and becoming an object kept end-of-life issues cope far better when death alive at all costs in the Intensive Care Unit is does occur than families that have avoided another frightening concept for dying patients. addressing them. Patients and their families Finally, a fear of inadequate pain control is an should especially reflect on the issues that we issue of concern to many patients. have outlined below, particularly while patients Physical Problems are still in good health. : Dying patients generally express concerns about not being able to perform Personal and Family Reconciliations: We activities such as maintaining personal hygiene. have witnessed the guilt expressed by family Acceptance of Death by Others members who have failed to reconcile differences : While some with their dying loved one. This also holds true dying patients may be content as they approach for friends of the dying patient. The most the end of life, some family members may be appropriate time for dealing with patient and unable to accept their loved one’s approaching family issues is prior to the transplant. “I never death. This should be dealt with before patients got a chance to tell him . . . .” or “If I only could undergo transplantation, so that everyone tell her . . . .” are often heard in the room of the involved is comfortable with the decisions that dying patient. have been made. Patients should maintain control over the end of life. Spiritual Issues: Patients may want to make What-If Issues peace with their God, and come to terms with : Living wills and durable power concepts about death and the afterlife, especially of attorney for health care fall under this area. as taught by their religion. “Will I be allowed to die appropriately?” or “If I sign one, will the health care professionals or Loss of Potential: Patients must realize that surrogates follow my wishes?” are questions dying as the end of life nears, they must be satisfied by patients may ask. Every patient should address what they have accomplished. What can still be the production of a will with an attorney. accomplished is limited, and patients should Patients, families and physicians are usually able have realistic expectations for the remaining to agree about treatment when these issues are portion of life. addressed while the patient is still competent to make important decisions. Loss of Present Lifestyle: As their health deteriorates, patients may no longer be able to Problems arise when patients, families and work or pursue activities that were important to physicians disagree on when treatment is to be them before. Patients must come to terms with withheld. When patients do not communicate the fact that as the end of life approaches, they their desires when they are competent, the family must make lifestyle changes to accommodate for is forced to play the “what-if” game. Living wills the change in their health status. and durable power of attorney state what treatment the patient wants or doesn’t want. Inappropriate Expectations: Patients who Patients pick a surrogate to be their spokes- approach transplantation expecting it to cure person for when they are no longer competent. everything are not being realistic; discussions The surrogate is an important and sometimes about death are usually not welcomed by such difficult role, because this person must follow the patients. For patients to approach the end of life patient’s wishes even when the family or with dignity, they must deal with end-of-life issues, especially while they are healthy. Continued on page 15 Transplant Chronicles, Vol. 5, No. 1 13 Medical Beat

Viral Infections in Transplant Recipients by Thomas C. Knauss, MD

If you receive a transplant that contains CMV, s an organ transplant patient, if you you need to take special precautions. Your A transplant physician may put you on high doses experience fever, you may have a bacterial infection or a viral infection. Fever in the post- of anti-viral drugs from the time of the transplant period is typically caused by bacterial transplant. Another choice is to infuse high infections of the lung, surgical wound or urine, levels of CMV antibodies, which bind to the virus but viral infections can also cause fever during and help your body to clear the infection. The the initial six months following transplantation recent release of ganciclovir in pill form and anti-rejection therapy. Although viral simplifies prolonged outpatient treatment. infections caused by the common cold are as Another important chronic viral infection is frequent in transplant recipients as in the that caused by EBV, which causes infectious general population, several types of viral mononucleosis. Ninety percent of the world’s infections, such as cytomegalovirus (CMV), adult population has been infected with EBV at Epstein-Barr virus (EBV), hepatitis B virus (HBV) some time in their life. EBV lies dormant in the and hepatitis C virus (HCV), commonly result in body after an initial infection and leads to symptomatic disease in transplant recipients. disease in the post-transplant period after These viruses, which normally lie in a resting reactivation. Transplant recipients who have no state in individuals who have a normal immune previous exposure to EBV and receive an organ system and are not on anti-rejection drugs, from a donor with a history of EBV exposure are become reactivated when individuals are placed at great risk for EBV. on medications that suppress the immune EBV infection may cause fever, sore throat, system after a transplant. If you have no history swollen glands and fatigue—symptoms similar to of exposure to these viruses, you are at greatest those of infectious mononucleosis. Although risk for serious disease after you receive a this is usually a self-limited process, in rare transplant organ infected with one of these cases the white blood cells in the lymph glands viruses. These common viruses pose a serious may continue to proliferate into tumorous health risk for organ transplant recipients; growths, a condition known as Post-Transplant however, preventive strategies have been Lymphoproliferative Disorder (PTLD). It develops developed to reduce the risk for serious disease. in about one percent of renal transplant CMV is a viral infection that commonly occurs recipients, two percent of liver transplant between one and six months after transplan- patients and two to three percent of heart or tation. This virus, which affects about 60 percent lung transplant recipients. Not uncommonly, of people during childhood or the young adult when the tumor develops, it does so in the organ years, typically shows symptoms indistinguish- that was transplanted. The risk of developing able from a cold or flu. Pre-transplant screening PTLD is highest in transplant recipients who for CMV is carried out by a blood test that have received the most intense anti-rejection determines if the individual produces CMV therapy. antibodies; those with prior exposure to the virus Treatment of EBV-associated disease includes will have CMV antibodies in their blood. Although the anti-viral drug acyclovir. In many instances, cold and flu symptoms such as a short period of reduction in doses of immunosuppression is fever and chills are the norm for CMV infection, required; however, anti-rejection drugs may need extreme cases can lead to pneumonia, to be stopped in order to control growth of the ulcerations of the intestinal tract or hepatitis. EBV-activated white blood cells. Kidney transplant recipients may experience direct inflammation of the kidney or even a Finally, chronic liver infections caused by HBV kidney rejection episode. Fortunately, the and HCV pose additional problems in transplant antibiotic ganciclovir is very effective against this recipients because asymptomatic patients may infection. develop liver disease after beginning an anti-

14 Transplant Chronicles, Vol. 5, No. 1 rejection drug regimen. HBV, which is typically HCV-positive kidney into someone who has not acquired through infected blood products, is a previously been exposed to the virus is not clear. viral infection of the liver that causes five to 10 Certainly, before we could test for HCV this percent of the chronic liver disease cases in the happened frequently. It is possible that some U.S. Fortunately, the frequency of this infection older individuals (older than 65) who are on the has diminished in recent years due to advances transplant waiting list and HCV-negative might in our ability to successfully screen blood choose to accept an HCV-positive organ and products for HBV, a decrease in the need for accept the risk of liver disease eight to 12 years blood transfusions in dialysis patients due to the in the future. development of erythropoietin injections that Reference: stimulate the body to make blood and the use of Rubin, R.H., “Infection in the Organ Transplant effective vaccines against this virus. Recipient.” Clinical Approach to Infection in the HCV can also affect the liver. Since a reliable Compromised Host (third edition). New York and blood test to diagnose this infection has only London: Plenum Medical Book Company, 1994, been developed within the past 10 years, many pages 629-705. dialysis patients were already exposed to this Thomas C. Knauss, MD, works in the Division virus by blood transfusions in the past. Five to of Nephrology at University Hospitals of 15 percent of all dialysis patients and a similar Cleveland and Cleveland VA Medical Center in percentage of transplant recipients have been Cleveland, Ohio. T infected. Hepatitis C can also be spread in ways C C other than blood transfusions. Two to six Planning Ahead… percent of potential kidney donors also carry the virus. HCV is even more likely than HBV to Continued from page 13 cause liver scarring, which occurs in 20 percent physician disagrees. Open dialogue between the of HCV-infected individuals. Although this family members and the surrogate decision- usually occurs over a period of 10 to 20 years in maker can stop problems before they arise and non-transplant patients, evidence shows that “what if?” will be an unnecessary question. this may occur over an eight- to 12-year period in patients on immunosuppressive medications. The living will is not used until a person is terminally ill, so having one ensures patients Early studies of renal transplantation in that their wishes will be carried out the way patients with evidence of HBV in their they decided. Patients do not need an attorney bloodstream suggested that they would have to produce a living will; a social worker can poor results due to worsened liver disease. assist in filling out the document. A statutory Recent studies suggest that renal transplan- durable power of attorney appoints an agent to tation can be performed in these individuals act on the patient’s behalf, concerning personal with similar success rates to non-HBV patients. property transactions, bill payments and tax Progressive liver damage still occurs in most matters. If a spouse is unavailable, a trusted patients, whether they are transplanted or relative or friend can care for the patient’s remain on dialysis. Patients who are infected personal matters when he or she is unable. This with HBV, but do not have evidence of this virus document must be completed by a lawyer. in their blood at the time of transplantation, Fear of Being Forgotten: Often patients have a low risk of liver disease. wonder if they will be forgotten. Writing to a Currently, all potential donor organs are friend on his birthday, a daughter on her tested for HCV in the U.S. At some transplant birthday or a spouse on a wedding anniversary centers HCV-positive kidneys are offered to can help patients. Many people don’t like to possible recipients who already carry the HCV write, so leaving a tape is a nice personal touch. virus. It is expected that this will not put them Like birth, death is an important event in our at any greater risk of developing liver disease lives. Planning ahead for all the possibilities can than they already have. This allows organs to be give us and our families the opportunity to enjoy precious time together. used that ordinarily would be discarded, and it allows recipients to receive a transplant much Mary Claire Mahoney, RN, BSPHN, MS, is a sooner. If your transplant center were to offer hospice nurse and the director of Palliative Care you this choice, the risks and benefits would be Services at Hermann Hospital in Houston, T discussed with you so that you could make an Texas. C informed decision. The risk of transplanting an

Transplant Chronicles, Vol. 5, No. 1 15 keeping fit

Strength For Seniors by Vanessa Underwood, BS, AFAA, ACE

For transplant recipients, staying active on Many adults limit their activity because they have a daily basis is as important as keeping lost strength, not cardiovascular endurance. appointments, taking medication and having Start off with a gravity resistance exercise. bloodwork done. This is necessary for everyone, You can perform these exercises with free perhaps even more so for seniors. I teach a senior weights, weight machines or elastic bands. I fitness class whose members are more fit than always tell my new members to start by using the high school kids I teach, because the seniors soup cans for weights, adding weight to increase exercise on a regular basis. resistance, but not so much that it makes them As transplant recipients or dialysis patients unable to perform the exercise in correct form. awaiting a kidney transplant, we have many You will begin to increase muscle mass and issues to face, including the loss of strength, strength by lifting the weight for a number of stamina and muscle tone. The natural process of repetitions. Progressively increasing the weight aging also induces this same loss of strength, will further enhance the results. A good rule to stamina and muscle tone. Daily functions like follow in determining how much weight to use is getting dressed, driving, to lift an amount that will shopping, cooking and make your arm tired after climbing stairs can all 10 repetitions. Once the become a challenge. weight becomes light Numerous studies have enough to lift more than 10 demonstrated that exercise consecutive times, you can slow the aging process, should increase the weight. regardless of age and Resistance training will physical condition. help you increase your It is vital that you stamina and strength, begin to incorporate reduce blood pressure, exercise into your daily life. relax, and increase your For some, this may be a balance, flexibility and 30-minute walk once a bone density. It will also day; for others it might increase your metabolic mean parking your car rate, enabling food to be further away from the utilized more effectively. entrance to the mall. Even Individuals who exercise getting up off the couch to regularly find themselves change the channel instead eating more and weighing of using the remote control less. will add a few more steps Maintaining a balance to your day. of physical activities is a Vanessa and her pupils demonstrate the You should always get key factor in living a long clearance from your proper weightlifting technique. and fit life. Many physician before you begin communities have senior to exercise, especially before beginning a fitness programs, offering , low-impact resistance program. Resistance training is a good aerobics, line dancing, yoga, martial arts and start because it builds muscular strength, which stretching. Almost any physical activity will have a positive effect on your health. T is necessary for all other sports and activities. C

16 Transplant Chronicles, Vol. 5, No. 1 eating right

Appetite Suppressants: Are They Safe for Transplant Recipients? by Gail G. Bridges, PharmD

f you have been battling your body weight It is important to note that these studies have forI years, or if you have gained an extraordinary been of overweight, but otherwise healthy, amount of weight since your transplant volunteers. There have been no scientific studies procedure, you may have considered trying of transplant recipients taking these drugs, or for appetite suppressants. There are several drugs that matter, of transplant recipients taking these available; however, it is important to examine how drugs in combination with transplant they might affect transplant recipients. medications. Transplant recipients who already experience high blood pressure, tremors or Two of the more common appetite suppressant diarrhea are not good candidates for appetite regimens are dexfenfluramine and a combination suppressant usage. Additionally, confusion would of the drugs phentermine and fenfluramine. not be beneficial for someone who has to take 12- Studies show that these medicines are effective in 15 essential transplant medications every day. helping overweight adults to lose significant amounts of weight. According to these studies, Luckily, everyone does not experience these weight loss was achieved when the medicines side effects. Current thinking indicates that these were used in combination with dietary drugs will be reserved for the transplant recipient restrictions. After ending the usage of who is so overweight that he or she is endanger- appetite suppressants, weight loss ing the transplanted organ or his or was best maintained when the her life, and has failed controlled dietary restrictions were and monitored attempts to continued and an exercise “Anyone who lose weight with diet and regimen was exercise. Transplant implemented. takes appetite recipients who are prescribed these Unfortunately, these suppressants requires appetite suppressants drugs are not without will be required to risk. Both of the frequent visits with his continue their dietary aforementioned restrictions and visit medication regimens can or her health care their health care provider cause similar side effects, more frequently. including: high blood provider.” pressure, nausea and vomiting, In the future it may become tremors, confusion, diarrhea or clearer who should and should constipation, sleepiness or insomnia, not be prescribed appetite suppressants. abnormal heart rate and bad dreams. Primary Until further research is completed, you should pulmonary hypertension, although rare, is be evaluated by your transplant physician before perhaps the most serious side effect of these beginning any weight loss program, and work medications, and can become life-threatening. very closely with your dietitian to determine and Patients who already have primary pulmonary develop your best weight loss program. hypertension, glaucoma, high blood pressure or Gail G. Bridges, PharmD, is a pharmaceutical heart disease should not take these medications. consultant. T Anyone who takes appetite suppressants requires C frequent visits with his or her health care provider.

Transplant Chronicles, Vol. 5, No. 1 17 Parents Touched by Son’s Offer by Michael S. Freel, BA, CPTC, CTBS “He does more for his mom than he thinks,” Daniel Honaker is a nine-year-old third- says Ray. “We really don’t like him having to do grader from Omaha, Nebraska. Like a lot of kids, more, but we think it’s extra special that he Daniel thinks about becoming a firefighter, just does.” like his dad, Ray, when he grows up. Or, maybe he’ll play baseball. Unlike a lot of kids, Daniel Daniel is a smart child who knows that his wants to give his mother one of his kidneys. mother’s health won’t improve without a transplant. That’s why he wants to give her one of The doctors who are taking care of his mother, his kidneys. Tanya says, “I don’t think Daniel Tanya, in Omaha, have explained to Daniel that realizes how much it meant just to have him ask he’s too small and his organs are too small. But to donate a kidney.” Tanya has a very high Daniel doesn’t care about this, nor does he care percentage of reactive antibodies, which makes about blood and tissue type; he cares about his finding a suitable kidney even more difficult. She mother, who he sees getting weaker and weaker. received a transplant a few years ago, but her When asked about his mother’s dialysis body rejected the kidney, which Daniel attributes treatments, Daniel says, “She’s really sick and to his mother’s “stubborn tissues.” comes home tired.” Tanya dialyzes three times a week and often has adverse reactions after her Daniel’s expression of love for his mother has treatments. touched the hearts of all those who know him, as well as many professionals in the field of One time, Tanya returned home from dialysis, transplantation. Daniel allows us to experience collapsed and had a seizure. Daniel was with her the frustration that families experience when and called his father at the fire station. Daniel someone they love is waiting for a life-saving remained calm, and Ray and the rescue squad transplant. Sometimes we forget that it’s not just arrived in a few minutes to help Tanya. Daniel the patient who has to go through the stress and has seen his mother sick for so long that he anxiety related to a transplant. Having the understood what was happening. “I watched her support of her family has helped Tanya through and made sure she wouldn’t hurt herself or the whole ordeal. The three-and-a-half-year wait anything,” Daniel says. has been difficult, but when Tanya finally gets her Beyond the seizure, Ray remembers numerous new kidney, she says it’s going to be time for a occasions when Tanya came home from dialysis, vacation. She wants to go to Disneyland. Daniel suffering from dizzy spells and hot flashes. He wants to go to Texas and visit his cousins, and says Daniel has always been there to lend a hand then go to Disneyland. and cool her off or retrieve her medications. Michael S. Freel, BA, CPTC, CTBS, is the When his mother needs help in the kitchen, procurement coordinator for Nebraska Organ Daniel is there for her. He takes out the trash, T Retrieval System, Inc., in Omaha, Nebraska. C does some of the housework and is willing to help his mother whenever she needs it.

Nine-year-old Daniel Honaker (center) has offered a kidney to his mother, Tanya (left). Daniel’s father, Ray (right), calls his son’s actions “extra special.”

18 Transplant Chronicles, Vol. 5, No. 1 1997 U.S. Winter Games a Mammoth Success

ammoth Mountain, the home of the U.S. critical need for organ donors. “While we were M competing at Mammoth, more than 15,000 people Ski Team and the host of this year’s Women’s World Cup, was the site for the 1997 U.S. Winter witnessed our events, each hearing the facts Transplant Games, presented by the National about organ donation over a public address Kidney Foundation. Nestled high in the eastern system that was broadcast around the mountain,” Sierras in Mammoth Lakes, California, Mammoth said Colleen Horan, Transplant Athletics director Mountain brought transplant recipients from for the National Kidney Foundation. “When they across the nation together to compete in Alpine could see transplant recipients aggressively and Nordic ski events. and competitively on a World Cup course, it made a very powerful impact. Of course, we distributed The wild storms of the west took a break just many organ donor cards throughout the week.” long enough to allow for sunny skies, 50° temperatures and 14 feet of fresh snow—ideal for The U.S. Winter Transplant Games would not racing! There was close competition among the have been possible without the generous support age groups and impressive skiing by all the of principal sponsor, Roche Laboratories; major participants. sponsor, Wyeth-Ayerst Laboratories; and event sponsors SmithKline Brian Rothermel, a Beecham, Cellular heart recipient from One of Bishop, Denver, Colorado, won Kenyon Consumer the Outstanding Male Products, PowerBar Athlete Award. Brian, and the National who is a ski instructor, Kidney Foundation of swept the men’s Northern California. downhill category with The U.S. Winter four gold medals. Transplant Games, Diane Wittwer, a like its sister event, kidney recipient from Marie Olson, a liver transplant recipient from Battle Ground, the U.S. Summer Littleton, Colorado, Transplant Games, won the Outstanding Washington, creates some serious snow dust. helps educate the Female Athlete Award. public about organ Diane, who is an elementary school teacher, won donation and transplantation issues. The Games gold medals in the parallel, dual and giant slalom also generate awareness in the transplant events, a silver medal in the super giant slalom community regarding the benefits of fitness and and a bronze in the 3K cross-country competition. well-being for recipients. Other excellent performances deserve mention. Thirteen-year-old Patrick Halabi, from Santa Ana, The National Kidney Foundation is proud to California, won four gold medals in the downhill announce that the next U.S. Winter Transplant events and had the fastest recorded time of all age Games will be held in conjunction with the Winter categories in the “silly” slalom event. Michael World Transplant Games in the winter of 1999. Coonfield from South Berwick, Maine, breezed All participants from the United States will through the 3K cross-country race with a time of compete as part of Team USA against transplant T 21:12. recipients from more than 18 countries. C Mammoth Mountain proved to be the perfect setting for appealing to the public about the

Transplant Chronicles, Vol. 5, No. 1 19 National Donor Recognition Ceremony: Transplant Recipients Express Gratitude by Brian T. Maguire Attending the 1997 National Donor Other speakers included Art Buchwald, who Recognition Ceremony (April 12-13) was special discussed his relationship with fellow columnist for me because it was the first donor family Erma Bombeck, a kidney transplant recipient conference since I met my own donor family. I who succumbed to kidney disease in 1996. thought my feelings might have been different, Acting Surgeon General Audrey Manley was but to my surprise, I felt even more connected proud to be the first person in her position to than I did in the past. attend the ceremony. Assistant Surgeon General Ken Moritsugu shared his personal stories on I participated on a panel for a workshop titled, organ donation, as did singer-songwriter David “Communications Between Donor Families and Crosby, a liver recipient. All of the speakers had Recipients.” We shared our experiences and the one basic request—for people to share their need to know each other. Many people shared personal stories their feelings about throughout their meeting their loved one’s communities with the goal recipients and the love of educating others. they feel for them. There was even a donor family The Annual National whose loved one’s Donor Recognition recipients will marry each Ceremony is cosponsored other soon. How wonderful by the Division of that the family tree can Transplantation, NKF’s grow! National Donor Family Council and many other Sunday’s ceremony transplant-related provided many highlights. Hundreds of donors and donor families were honored at organizations. Vice President Al Gore the National Donor Recognition Ceremony. Here, a donor announced an exciting family receives a Gift of Life medal from a recipient. Brian T. Maguire is a new Web page to be kidney transplant recipient. launched by the National Kidney Foundation’s He is also the vice president of the Manhattan National Donor Family Council. The page will be chapter of the Transplant Recipients International T an excellent vehicle for donor families to Organization (TRIO), Inc. C exchange information. Gore also urged for a new American tradition of organ and tissue donation.

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