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Path: senator-bedfellow.mit.edu!dreaderd!not-for-mail Message-ID: <medicine/transplant-faq/part4_1082200966@rtfm.mit.edu> Supersedes: <medicine/transplant-faq/part4_1079601013@rtfm.mit.edu> Expires: 31 May 2004 11:22:46 GMT X-Last-Updated: 2000/12/14 From: mike_holloway@hotmail.com (Michael Holloway) Newsgroups: bit.listserv.transplant,sci.med,sci.answers,news.answers Subject: FAQ: bit.listserv.transplant, Organ transplantation ng (Part 4 of 4) Followup-To: bit.listserv.transplant Organization: none Approved: news-answers-request@MIT.Edu Reply-To: mike_holloway@hotmail.com (Michael Holloway) Summary: This is a description of the bit.listserv.transplant newsgroup and its parent mail list, TRNSPLNT. Frequently asked questions regarding organ transplantation are addressed. A list of resources for transplantation patients is provided. Pointers to other Internet transplantation resources are provided. Originator: faqserv@penguin-lust.MIT.EDU Date: 17 Apr 2004 11:26:58 GMT Lines: 1540 NNTP-Posting-Host: penguin-lust.mit.edu X-Trace: 1082201218 senator-bedfellow.mit.edu 576 18.181.0.29 Xref: senator-bedfellow.mit.edu bit.listserv.transplant:59088 sci.med:366942 sci.answers:15943 news.answers:269800 Archive-name: medicine/transplant-faq/part4 Part 4 of bit.listserv.transplant FAQ Last revised 11/15/99 by Russel Witte The items below are copied from TransWeb at University of Michigan, Department of Surgery. Many people contribute to TransWeb, but the principle authors of the material below are Eleanor Jones, Jeff Punch, Joel Newman, P.J. Geraghty, Alan Leichtman, and Bob Merion. Longer articles, including first hand accounts from transplant recipients, links to other data, and the more accessible WWW/html format, can be obtained by accessing TransWeb through use of a web browser and the URL address below: http://www.transweb.org See Part 1, section II for list of TransWeb contents. Contents I. Organ and Tissue Donation: A Gift of Life What do I do if I want to donate? Top 10 Misconceptions About Organ Donation II. Ask TransWeb Questions and Answers III. Frequently Asked Questions IV. Organizations Promoting Donation ========================================================================== I. Organ and Tissue Donation: A Gift of Life ========================================================================== What do I do if I want to donate? --------------------------------- Talk about it with your family. The single most important way to "register" as a donor is to "register" your wishes with your family. Donor cards, driver's license stickers, and other means may also be used, but first be sure your next of kin knows your wishes. In Michigan... The Transplant Society of Michigan has begun a computerized list of everyone in the state of Michigan who wants to donate their organs and tissues, so that upon death their wishes can be immediately known. Anyone wishing to join the registry should fill out and sign a card and have two people witness it; then put the business reply card in the mail. That person's wishes are then recorded in the database; he/she also receives a card to carry. So far, over 1,700 people have joined the registry. For cards, please call the Transplantation Society of Michigan ("Gift of Life") at 1-800-482-4881. For more information, please read the text of the brochure (below...to come later). In New England... See the New England Organ Bank's site - and print out (and sign) a donor card. In other states... Please call the nationwide donation hotline at the United Network for Organ Sharing (UNOS) at 1-800-243-6667 (a.k.a. 1-800-24 DONOR) to order a donor card, locate your local organ procurement organization, or get other information. --------------------------------------------------------------------------- Around the World... Anyone having information on donor cards or the recommended procedures for expressing your wishes regarding donation in other countries is invited to write to the transplant webmaster. <egjones@umich.edu> --------------------------------------------------------------------------- Top 10 Misconceptions About Organ Donation ------------------------------------------ 1. I do not want my body mutilated. Donated organs are removed surgically, in a routine operation similar to gallbladder or appendix removal. Normal funeral arrangements are possible. 2. My family would be expected to pay for donating my organs. A donor's family is not charged for donation. If a family believes it has been billed incorrectly, the family immediately should contact its local organ procurement organization. 3. I might want to donate one organ, but I do not want to donate everything. You may specify what organs you want donated. Your wishes will be followed. 4. If I am in an accident and the hospital knows that I want to be a donor, the doctors will not try to save my life. The medical team treating you is separate from the transplant team. The organ procurement organization (OPO) is not notified until all lifesaving efforts have failed and death has been determined. The OPO does not notify the transplant team until your family has consented to donation. 5. I am not the right age for donation. Organs may be donated from someone as young as a newborn. Age limits for organ donation no longer exist; however, the general age limit for tissue donation is 70. 6. If I donate, I would worry that the recipient and/or the recipient's family would discover my identity and cause more grief for my family. Information about the donor is released by the OPO to the recipients only if the family that donated requests that it be provided. 7. My religion does not support donation. All organized religions support donation, typically considering it a generous act that is the individual's choice. 8. Only heart, liver and kidneys can be transplanted. The pancreas, lungs, small and large intestines, and the stomach also can be transplanted. 9. Wealthy people are the only people who receive transplants. Anyone requiring a transplant is eligible for one. Arrangements can be made with the transplant hospital for individuals requiring financial assistance. 10. I have a history of medical illness. You would not want my organs or tissues. At the time of death, the OPO will review medical and social histories to determine donor suitability on a case-by-case basis. --------------------------------------------------------------------------- Posted on TransWeb by permission of CORE, the organ procurement organization for the region of western and central Pennsylvania, West Virginia, and southern New York (U.S.A.). CORE is the Center for Organ Recovery and Education, located at 204 Sigma Drive, RIDC Park, Pittsburgh, PA 15238. Phone: 412-963-6710 (However, please note that general questions about donation in the U.S. should be directed to UNOS, at 1-800-DONOR24.) --------------------------------------------------------------------------- ================================== II. Ask TransWeb Questions and Answers ================================== If you have a question to ask, please access the submission form with a web browser and the URL below. http://www.transweb.org/qa/asktw.htm Contents 1 * Who is responsible for paying for the care of a donor? 2 * Life expectancy of liver transplant patients, and can they be weaned off meds? 3 * Spouses as kidney donors 4 * How many transplant survivors are there in the US? 5 * How long can donor organs last on life support? 6 * Are organs allocated based on race? 7 * What is the life expectancy of kidney/pancreas grafts? 8 * If someone abuses their body, will they still be given a transplant? 9 * What is the life expectancy of an LR kidney transplant? 10 * What are the risks & benefits of kidney-pancreas transplants? 11 * When can organs be "harvested"? 12 * Can I sell my kidney? 13 * Can well-connected people like Mickey Mantle get transplants faster? 14 * What's the prognosis & treatment of Hep C in liver transplant patients? 15 * How long is rejection a concern? 16 * Success, life expectancy, and preservation of heart transplants 17 * What is brain death? 18 * What does a liver transplant cost? 19 Other questions answered on TransWeb -------------------------------------------------------------------------- 1 * Who is responsible for paying for the care of a donor? Question: Suppose a medical staffperson puts someone on life support waiting for permission from relatives regarding organ donation. At what point does financial responsibility end for the patient and/or relatives? Answer: The patient's family's financial responsibility ends when the person is declared dead by brain criteria (brain dead). At the time at which this is documented, the patient is legally dead and the hospital does not bill the family for any charges incurred thereafter. If the patient becomes an organ/tissue donor, the organ/tissue procurement organization (OPO) is billed for the charges incurred during the management of the donor. The OPO pays those charges according to established Medicare guidelines. P.J. Geraghty (procurement coordinator), Washington Regional Transplant Consortium -------------------------------------------------------------------------- 2 * Life expectancy of liver transplant patients, and can they be weaned off meds? Question: What is the life expectancy of liver transplant patients? Has anyone been weaned completely off antirejection medication? Answer: No one knows the answer to this question. The longest living survivor was transplanted in January of 1970, over 25 years ago. Yes, some patients have been weaned completely off anti-rejection medications under very special circumstances. Currently no one knows which patients can be succesfully weaned from antirejection medications and which patients will develop graft failure and die if weaning immunosuppression is attempted. Jeff Punch, MD (transplant surgeon), University of Michigan -------------------------------------------------------------------------- 3 * Spouses as kidney donors Question: Recently there has been more interest in spousal donors for kidney transplants. What are the latest thoughts on this and what are the statistics, if any, for such a donor transplant ? Answer: Fifteen years ago, (before the introduction of cyclosporine) the only kidney transplants with good success rates were those from a very closely matched blood relatives. Modern immunosuppression with cyclosporine and Tacrolimus (FK506) has now improved overall results so much that tissue matching for kidney transplants is much less important than it used to be. Currently most transplant centers in the United States are willing to consider donation by spouses if no volunteer donors that are blood relations are available. Careful screening is followed to ensure that the donor can safely donate a kidney. Experience with living donation has shown that living donors are no more likely than the general population to develop kidney failure. The latest statistics were published in the New England Journal of Medicine on August 10, 1995. Dr. Terasaki reported that in the United States "three year survival rates were: 85 percent for kidneys from 368 spouses 81 percent for kidneys from 129 living unrelated donors who were not married to the recipients 82 percent for kidneys from 3368 parents, and 70 percent for 43,341 cadaver kidneys." He concluded that "the graft survival rate is similar to that of parental-donor kidneys. This high rate of survival is attributed to the fact that the kidneys were uniformly healthy."(N Engl J Med 1995;333;333-6). Jeff Punch, MD (transplant surgeon), University of Michigan -------------------------------------------------------------------------- 4 * How many transplant survivors are there in the US? Question: How many transplant survivors are there in the US (by organ or total)? World-wide? Answer: Estimating how many transplant recipients are living at any given moment is very tricky. The latest estimate -- and this is in no way an exact figure -- is that there are between 60,000 and 70,000 people living in the U.S. who have at some time received an organ transplant. About 200,000 transplants have been performed in the U.S. since 1954, but remember that many recipients have since died (due to graft failure or other causes). Also, a number of the transplant operations have been repeat transplants on the same individual (2 or 3 transplants per one patient). I would not even be able to estimate similar figures worldwide. Joel Newman, United Network for Organ Sharing -------------------------------------------------------------------------- 5 * How long can donor organs last on life support? Question: How long could a person's organs last on life support until the organs are deemed unusable? Answer: Like so many other things in the transplantation realm, the answer is "it depends." Because there are many variables in the management of the brain-injured patient, it is impossible to give an estimate of how long organs could last from the time brain death is declared (which is the time after which it is acceptable to approach a family about organ donation and recovery of those organs) until the time that the organs are actually removed from the body. One question is: when does brain death occur? The outward clinical signs are not always very obvious. For purposes of brain death declaration, brain death is said to have occurred when 1) the respiratory system has stopped working; 2) the cranial nerves are no longer responsive; and/or 3) the brain's blood supply has been interrupted. While we can test for the absence of all of these, we generally cannot overtly witness the cessation of reflexes or blood flow. The bottom line is that patients are often PRONOUNCED brain dead hours or even days after brain death has actually occurred, simply because no one tests for it or because multiple tests separated by some time period are required. Another variable: how well has the patient been maintained? Sometimes, medical staff will not treat brain-injured patients very aggressively, and the patients will suffer organ damage. This will lessen the amount of time available to recover the organs. SO...the final answer is: it still depends. It can be anywhere from a few minutes to several days. It depends on how well maintained the donor is and how quickly brain death is identified and declared. Hope this answers your question. P.J. Geraghty, Procurement Coordinator, Washington Regional Transplant Consortium -------------------------------------------------------------------------- 6 * Are organs allocated based on race? Question: Are organs allocated based on race? Answer: When an organ procurement organization ("OPO") places a person on the UNOS waiting list race is a part of the information that is collected by UNOS. They use this information to develop and evaluate allocation policies and for research purposes. They also collect other information on the potential recipients such as lab values and the duration of their illness. Only the donor coordinator knows the organ donor's race until the follow-up information is submitted to UNOS a month later. Race does not play a part WHAT SO EVER in the allocation of organs. If a donor's family stated that they only want their loved one's organs to be transplanted into a person of a particular race, the OPO would tell them that they could not guarentee this and would decline to proceed with the donation under those terms. Every effort would be made to have the family agree to allocate their loved one's organs by current UNOS policy. UNOS has made great efforts to ensure a fair allocation system, one that does not look at a person's heritage, sex, social status, or race. Steve Emery (organ procurement coordinator), Iowa Statewide Organ Procurement Organization -------------------------------------------------------------------------- 7 * What is the life expectancy of kidney/pancreas grafts? Question: What is the life expectancy of the kidney and pancreas grafts? Do they usually both quit at the same time? Is it usually long term rejection or something else? Answer: On average about 75% of pancreas grafts function for at least a year, and about 50-60% survive five years. When kidney and pancreas transplants are performed simultaneously the grafts can have rejection together or separately. The most common long term problem with both kidney and pancreas transplants is rejection. Jeff Punch, M.D. (University of Michigan) -------------------------------------------------------------------------- 8 * If someone abuses their body, will they still be given a transplant? Question: I am doing a research paper on transplantation. Can you please answer these questions? 1. Prior to a transplant, is life-long abuse of the individual organ considered in the decision-making process? 2. If there is a choice between two patients, one who took care of an organ, but it fails and the other who abused it, who gets the organ? Answer: The answer to both your questions is: NO, whether one's conditions is self inflicted or not is not considered when allocating organs. Basing allocation on a judgment of whether one's condition was self-inflicted is simply not possible. Supposing that it is possible is far too simplistic a view. Where would the line be drawn between someone that is "worthy" to receive an organ and someone that had created their own problem and was therefore not "worthy"? Show me one adult human being alive that has never done something that was known to be contrary to their health. Well, one little steak with fries and lots of salt didn't cause anyone to get high blood pressure and kidney failure and heart disease, did it? How about eating these foods once a week; once a night? How about one glass of wine a night? An occasional binge with the gang? Cigarettes that were smoked in an era when everyone else smoked? What if someone was "stupid" enough not to quit their job if it caused them to be exposed to a hazard, like second-hand smoke? All of these behaviors cause diseases that may be treatable by transplantation. What about the person that foolishly didn't adhere to his doctor's advice to have a treatment that may have avoided the need for a transplant? ("If that guy had only taken his blood pressure medicines, he wouldn't have gotten kidney failure, therefore we should withhold a kidney transplant because he is to blame for his disease.") Is such a person less to blame for their disease than the person who drank excessive amounts of alcohol when everyone in the room was doing the same thing? Who is going to define just how much abuse was permissible? What about the person that "abused" his heart by choosing to have a job with a high amount of stress? Many occupations are known to be associated with higher rates of heart failure. Do people in those occupations deserve a heart transplant when someone who chose to be a librarian needs the heart as well? What about the person who was abused by their spouse and dealt with it by drinking alcohol to excess? Are they not accountable for their disease? It is known that abused people tend to drink too much. Do we want a medical system that defines exactly how we have to live in order to be judged worthy of care? Organ transplant is THE standard of care for chronic liver, kidney, heart and lung failure. The amount of alcohol necessary to cause liver failure is extremely variable. It is a misconception to suppose that everyone that has liver failure from alcohol was a worthless boozing leach on society. Most alcoholics are genuinely surprised to find out they have liver failure from too much alcohol because they drink the same amount as their buddies. Would we be judging them unworthy because of the fact that their disease was self- inflicted, or because they were too naive to realize they had a disease? There are people that probably could not drink enough alcohol to damage their liver if they had to, and there are people that can get liver disease from 4 drinks a day. Organs are allocated based on need, fairness, and the likelihood that the organ will succeed in restoring health. Patients that continue to abuse a substance are not candidates for transplants. Patients that attend alcohol rehabilitation, and are able to change their ways, are candidates to receive a life-saving organ. If we were to hold them accountable for past mistakes, we would be forced to hold every transplant patient accountable for their mistakes out of fairness, and this would not be possible. In general, if a patient does not follow medical advice when caring for a transplanted organ, they are not a candidate for a retransplant, whereas those who take care of their organs can rejoin the list of those waiting if a retransplant is required. Jeff Punch, MD (University of Michigan) -------------------------------------------------------------------------- 9 * What is the life expectancy of an LR kidney transplant? Question: I had a Kidney transplant in 1989. The Kidney was from my sister. Is there an expected life to a transplant or is the life range not known? In other words can one say that a LRD kidney tranplant have an expected life of 5-10 years or 10 to 15 etc.? Answer: Each of us inherits half of our genes from our mother and half from our father. The genes responsible for immunological reactions to transplanted organs are close to each other on a single chromosome; so, for the most part, they are inherited as a single group, called a haplotype. If siblings recieve the same group of genes from each parent, they are a two-haplotype (full or complete) match. If they receive one group that is the same and one group that is different, they are a one-haplotype (half) match. If both groups of genes are different they are a zero haplotype match. In general, two-haplotyped matched living related donor kidney transplants have a 50% chance of achieving 24 years of function, one-haplotyped matched living related donor kidney transplants have a 50% chance of achieving 12 years of function, and cadaver donor kidney transplants have a 50% chance of achieving 9 years of function (Cecka and Terasaki, "The UNOS Scientific Renal Transplant Registry", Clinical Transplants 1993, Paul I Terasaki and JM Cecka, eds., UCLA Tissue Typing Registry, 1993:1-18). This does not mean, for example, that a two-haplotype matched living related transplant will function for 25 years and then fail, or that a cadaveric donor transplant will last 9 years and fail. Any individual transplant, if well cared for, may last much longer. Alan Leichtman, MD (University of Michigan) -------------------------------------------------------------------------- 10 * What are the risks & benefits of kidney-pancreas transplants? Question: My wife's kidneys are failing and she will have to have a kidney transplant soon. She is also a diabetic. The subject of a kidney-pancreas transplant has come up. We are wondering if this is a wise option? What are the risks? Her diabetes has been under very good control and she is presently not suffering from any other side effects of diabetes, so this option seems very attractive. Answer: The issue of whether to have a kidney transplant alone, or a combined kidney pancreas transplant is extremely complex. The decision truly has to be individualized. Unfortunately I cannot give the kind of individual counseling your family needs in this forum. However, I would be happy to mention several issues that should be addressed so that when you talk to your nephrologists and surgeons you will have some background. First of all, it is very clear that both kidney transplants and kidney/pancreas combined (KP) result in longer life expectancy than dialysis for diabetics. The best results in terms of graft survival percentage is with a highly matched living donor kidney (usually from a sibling). The next best results are from a less highly matched living donor. Another advantage of a living donor kidney transplant is that it can generally occur sooner, often before dialysis has even begun. The wait for a KP is generally longer. Most KP patients will not require insulin as long as the graft is working. This is a particular advantage for a diabetic that has great difficulty achieving control of their blood sugar and finds themselves in the life threatening ranges of too high or too low very often. Another advantage of a functioning pancreas is the progression of the retinal disease, the neuropathy, and vascular disease may be slowed (but not reversed) by a functioning pancreas. These advantages need to be weighed against the higher rate of complications. These complications include rejection, infections, the need for reoperation because of failure for something to heal, dehydration due to the pancreas secretions, and others. Use the URL below for Graft and Patient Survival Rates for U.S. Transplants (from the United Network for Organ Sharing WWW site). http://www.unos.org/Data/main_default.htm Jeff Punch, MD (transplant surgeon), University of Michigan --------- This question is too complex for a brief answer. Pancreas transplantation is life enhancing; but, unlike other transplants, not necessarily life-saving or life-prolonging. Therefore, advice varies between physicians as to the best choice for individual patients (i.e. to receive a kidney transplant alone vs a combined kidney and pancreas transplant from the same cadaveric donor vs a kidney transplant first, to be followed by a pancreas transplant at a later date), and patients with very similar medical histories may come to different conclusions concerning the appropriateness of becoming pancreas transplant recipients. In general, pancreas transplants will protect diabetic patients who have difficulty detecting hypoglycemia (low blood sugars) from suffering hypoglycemic seizures and comas. Working pancreas transplants will also free the diabetic from the necessity of taking insulin injections and of following a diabetic diet; and may over time help to stabilize the progression of diabetic retinopathy and neuropathy, and reduce the risk of the recurrence of diabetic changes in the transplanted kidney (although these latter benefits are less definitely proven). On the other hand, pancreas transplantation involves a more extensive surgery and carries a higher risk of complication. My best advice is for you and your wife to discuss the appropriateness of her receiving a pancreas transplant with the physicians and staff of a transplant program which offers pancreas transplantation as an option. Alan Leichtman, MD (transplant nephrologist), University of Michigan -------------------------------------------------------------------------- 11 * When can organs be "harvested"? Question: Can an organ be taken after biological death has occurred? If so, what is the time window? Thank you. Answer: There are two basic types of donation: organ donation and tissue donation. Organs that can be donated are the heart, lungs, liver, kidneys, pancreas, and small intestine. These can be taken only while the heart is still beating, when the donor is "brain-dead." Brain death is defined as the irreversible cessation of all brain and brain stem functions. A brain dead person is maintained on a ventilator, and because the machine breathes for him, the donor's heart continues to beat and the organs continue to receive a blood supply. These organs are cooled with a preservatrive solution immediately after the heart is stopped in the operating room during the organ recovery. Tissues (skin, bone, corneas and heart valves) can be recovered up to 24 hours after the heart has stopped beating. For more information on this question, please e-mail me at geraghty@clark.net P.J. Geraghty, Procurement Coordinator, Washington Regional Transplant Consortium -------------------------------------------------------------------------- 12 * Can I sell my kidney? Question: Is it legal to sell my own kidney. If so, how do I go about doing it? I am in need of cash for my family needs. Answer: Paid donation is illegal in the United States, Canada, Mexico, and all of Europe. In India, paid organ donation has been tolerated in the past, but the government there has passed a resolution intended to eliminate the practice. To date, no reputable organization pays for human organs anywhere in the world. Although paid donation may occur in some parts of the world, the lack of accountability of the unscrupulous individuals that engage in this practice means that it is an unsafe to either donate a kidney through such an organization, or purchase a kidney in this way. Jeff Punch, Transplantation Surgery, University of Michigan -------------------------------------------------------------------------- 13 * Can well-connected people like Mickey Mantle get transplants faster? Question: Is there a possibility that well-connected persons---e.g., Mickey Mantle, Gov. Casey of PA, or wealthy foreigners---might get to the top of a list preferentially rather than by medical indications alone? Answer: The short answer is : NO. I take your question to mean "is there a realistic possibility that being connected affects organ allocation. Of course, the answer to any question that asks if there is "absolutely any possibility that".... is always, yes it is possible. Is it possible that both sides of the conflict in former Yugoslavia will kiss and make up? Well, yes it is possible, but realistically it won't happen. Is it possible that connections make a difference in organ allocation? As I said, anything is possible. Realistically, it does not happen. In the United States it is illegal to "engage in the commerce of human organs". The organ allocation system is organized nationally by the United Network for Organ Sharing (UNOS) charged with the equitable distribution of organs. Factors considered are time waiting, tissue and blood type matching, size matching, and severity of illness. The schemes for allocation are different for different organs. The case of Mickey Mantle has been covered extensively in the media. *There is absolutely no evidence that he was not the most ill person in his region of the country on the day he got his liver transplant.* According to the allocation system for livers, he has priority over people waiting longer, just as if he had been waiting longer than others but they were more ill, they would have priority over him. The case of Governor Casey was a special situation: he needed both a heart and a liver. At the time his transplant occurred, there was no national policy governing multi-organ transplants. The policy governing multiple organ transplants in the area where he was transplanted placed these patients at the top of the list. So when he was listed, he was automatically first. Many multiple organ transplants had been performed on patients previously. These cases did not make the headlines because the patients were not famous, but they too were elevated to the top of the list by virtue of the fact that they required multiple organs. Now that multi-organ transplants are more common, a national policy covering multi-organ recipients is in force. Wealthy foreigners can come to this country and be placed on the transplant lists if they meet medical criteria, just as they can donate organs if they are killed while in this country. The priority on the list is no different for foreigners, they take their place in line with everyone else. To prevent the influx of non-US citizens from using too many organs while US citizens are dying, UNOS has a policy that a transplant center should not do more than 10% of their transplants on non-citizens. In fact, most centers do far fewer than 10% of their transplant on foreigners. So foreigners have no way to buy their way to the top of the list. We in the world of organ transplantation are very sensitive to the fairness issue. Organ transplantation is perceived by some as something that only saves the lives of wealthy old people. The reality couldn't be farther from the truth. The goal of organ allocation couldn't be more altruistic: provide organs as fairly as possible for as many as possible before the patients die. The patients that are more ill have priority over the ones that aren't as sick. Unfortunately the perception of inequality keeps some people from donating their organs. This is tragic. The disease that result in the need for transplantation recognize no racial economic or geographic barriers. The allocation scheme is as fair as humans have been able to make it. Nevertheless, over 3000 people died last year because of a shortage of life saving organs. Give the gift of life: be an organ donor. Jeff Punch MD, Transplant Surgery, University of Michigan --------------------------------------------------------------------------- 14 * What's the prognosis & treatment of Hep C in liver transplant patients? Question: What is the prognosis for and treatment of liver transplant recipients with Hepatitis C? is Interferon B renal toxic? What have been the results of using Ribivirin for treatment of Hep C generally? Answer: In non-transplant patients with hepatitis C, interferon therapy has been shown to have a fairly good response rate. The biggest two problems are that the therapy must be taken for a long time (usually at least 26 weeks) and the patient has to give him/herself injections several times per week. Unfortunately, only about 25% of patients have a sustained response after the therapy is stopped. After liver transplantation, interferon's track record has been even less stellar. There have been no randomized trials (this is a way of critically evaluating new treatments to see if they really are better than existing standard therapy). Likewise, ribivarin has been used only anecdotally after liver transplant. The good news is that many patients with hepatitis C who receive a liver transplant do extremely well for many years. By blood testing, almost all show evidence that the virus is still present and it usually will eventually set up shop in the transplanted liver, although severe hepatitis with symptoms is the exception rather than the rule. Long term, the hepatitis certainly may damage the transplanted liver, but this is unpredictable both in terms of timing and severity. Bob Merion, MD (transplant surgeon), University of Michigan --------------------------------------------------------------------------- 15 * Question: My good friend just received a heart-lung transplant. How long should I worry about the chance of rejection? He got his transplant 2 days ago. Answer: Since heart-lung recipients are not on immunosuppressive (antirejection) medications before the transplant, your friend could face acute rejection anytime until an adequate level of these medications are attained. This is usually not life threatening and initially, can be treated with an increase in their immunosuppressive regimen or steroids. Jan D. Manzetti, RN, PhD, Coordinator of Cardiothoracic Transplantation, University of Pittsburgh ------------------------------------------------------------------------- 16 * Question: What is the rate of heart tranplant success? What is the life expectancy of a successful heart transplant patient? What is the length of time and means of preservation of a harvested heart? Answer: 1) The success of heart transplantation obviously varies according to risk factors prior to transplantation. In general the success rate of the surgery is close to 95% in most centers on the average. Traditional risk factors include age over 60, patients transplanted who are on a ventilator, patients with an elevated panel reactive antibody level (antibodies in the blood to foreign antigens seen rarely), patients who have had a previous heart transplant, and patients who have high pressures in the pulmonary (lung) blood vessels. At this time, however, a standard transplant has a 95% or higher chance of being initially successful, and if you survive the initial 30 days the chances are close to 90% that you will be alive at the end of the first year. 2) Life expectancy folllowing heart transplant is somewhat harder to predict because it depends upon a number of factors including age, patient compliance, immunological match of donor to recipient, and the era in which you were transplanted. Again average survival, obtained from the UNOS-ISHLT data base (which by the way can be accessed via the ISHLT home page) is approximately 60% at 5 years. In other words if 100 people have a heart transplant, 60% of them will be alive at 5 years. If we just look at the past 4 to 5 years, however, this number will be closer to 65 to 70%. Obviously individual programs will have higher or lower rates of survival depending upon not how good they are, but upon the types of patients they are willing to accept in their individual programs. Keep in mind that the average survival of a sick patient with congestive heart failure (again depending upon how sick they are) is 50% survival at 2 years without a heart transplant. By the way many centers have patients alive 8 to 10 years after transplant. 3)Most transplant centers use a cold solution of iced salt water solution to store a harvested heart in. This gives a comfort level of aproximately 3 to 4 hours of storage after a heart has been removed from a donor. On the other hand excellent survival has been seen in many centers with hearts that have been stored for up to 5 to 6 hours. Bob Kormos, MD (transplant surgeon), University of Pittsburgh ---------------------------------------------------------------------------- - 17 * Question: Can you give me a range of cost for a liver transplant? (in the U.S.) Answer: The approximate range is $75,000 to $250,000. This is a broad range because some patients will need prolonged hospitilization after a liver transplant, while others are home in a week. The cost for an individual patient is impossible to predict with any certainty. Jeff Punch, MD (transplant surgeon), University of Michigan ---------------------------------------------------------------------------- -- 18 * Question: What is brain death? Answer: Brain death is defined as the irreversible loss of all functions of the brain. It can be determined in several ways. First - no electrical activity in the brain; this is determined by an EEG. Second - no blood flow to the brain; this is determined by blood flow studies. Third - absence of function of all parts of the brain - as determined by clinical assessment (no movement, no response to stimulation, no breathing, no brain reflexes.) There are several ways in which a person can become brain dead, these include: 1. Anoxia caused by drowning, respiratory diseases, or drug overdose. 2. Ischemia - Blockage of an artery leading to the brain or in the brain, heart attack (stoppage of the heart for a period of time), bleeding in the brain. 3. Intracranial hematoma - caused by a head injury (a blow to the head) or a ruptured aneurism. 4. A gunshot wound to the head - causes destruction of brain tissue and swelling of the brain. 5. Intracranial Aneurysm - the ballooning of a blood vessel supplying the brain - can cut off blood supply or rupture. 6. Brain tumors - can destroy brain tissue and increase pressure within the brain. When any of the above occur, they cause swelling of the brain. Because the brain is enclosed in the skull, it does not have room to swell, thus pressure within the skull increases (this is "intracranial pressure"). This can stop blood flow to the brain, killing brain cells and causes herniation of the brain (pushing the brain outside of its normal space). When brain cells die, they do not grow back, thus any damage caused is permanent and irreversable. Some points to note: * A persons' heart can still be beating because of the ventilator and medications helping to keep the blood pressure normal. * A person who is declared brain dead is legally dead. In Iowa (and most other states) two physicians must declare a person brain dead before organ donation can proceed. Steve Emery (procurement coordinator), Iowa Statewide Organ Procurement Organization --------------------------------------------------------------------------- 19 Other questions answered on the Ask TransWeb page http://www.transweb.org/qa/asktw/asktw_questions.html * Meds prior to kidney transplant * Post-transplant pregnancies: What information is available? * Locating a source of corneas for research * How should gums swollen by cyclosporine be cared for? * Has anyone waited three years for a double lung txp before? * Diet recommendations for ADPKD? * Is it possible for a male to conceive children while taking FK506? * Would discontinuing txp meds help prevent skin cancer? * Can one switch from cyclo to FK506? * How long does it take to recover from kidney donation? * Side effects or concerns about switching from Imuran to CellCept? * What are the indicators for kidney transplant? * Is there any relationship between transplantation and Parkinson's? * How can I reach as many transplant recipients as possible? * What are the real costs of transplants? * Is there an organ transplant newsgroup? * Waiting List Depletion * Are there CRF-related newsgroups? * How can I get money donated for a heart txp? * Can you direct me to a lung txp program? * How long does kidney donation recovery take? * Can I donate if I have Hepatitis C? * When was the first liver transplant? * What are the risks to kidney donors? * Info on news coverage of the 25th anniversary of the first heart transplant? * What is the cause and treatment of neuropathic pain after txp? * How do you cope with the stress of waiting on the transplant list? * Where can I find support groups? * Was your transplant worth it? * How long can a liver last ? ======================================================================= III. Frequently Asked Questions ======================================================================= Important! Nothing on this page is medical advice! If you need a transplant, you need to seek the advice and care of qualified transplant physicians. This is a general source of information and only represents the opinion of each individual contributor. 1. Myth about Organ Donors Not Receiving Good Medical Care 2. Looking for a Transplant Center 3. Does my religion approve of organ donation? 4. A More Technical Explanation of ABO Organ Matching 5. What is chronic rejection? What is being done about it? 1. Myth about Organ Donors Not Receiving Good Medical Care ---------------------------------------------------------- People have told us that they would not carry donor cards because they thought that, if they were in critical condition, they would not receive the best care available. They believe that harvesting their organs might be more important to physicians than keeping them alive. This is another very unfortunate myth, and is one that is difficult to convince people is false. In practice, the physician must always look out for what is best for his or her patient and treat them accordingly. Perhaps it will help to give a technical explanation of what goes on under these circumstances: The situation that produces brain death is one of too much pressure inside the skull. The skull is hard and cannot expand. When the brain is injured by a blow, it swells just the way an injured ankle swells. Except the skull prevents the brain from expanding and therefore causes the pressure inside it to rise. If the pressure gets so high that blood can no longer get into the skull and reach the brain -- then brain death is the result. Brain death can also happen when bleeding occurs inside the brain (a ruptured aneurysm is a common reason) and the blood has no place to go. Again, since the skull cannot expand, too much pressure builds up. The care of patients under these conditions is very standardized. Sometimes the swelling stops short of the critical point and the patient recovers. Sometimes the swelling reaches the critical point and the patient dies. Fortunately for transplant patients, the heart and the other organs may be fine even though the patient "dies" when the brain is no longer being perfused. Many times, however, the other organs are injured by attempts to keep the swelling down in the brain. It is understood by everyone in the transplant business that some organs may not be useful to us because they were, in essence, sacrificed in the attempt to save the patient's life. This is as it should be. In reality, a patient's survival chances are not affected by their being a potentially useful organ donor. This is the issue that the people voicing his myth do not understand. If techniques changed from our current method of treating brain injuries, there could potentially be a conflict of interest. This is extremely unlikely from a scientific point of view, however, because we already know of one possible way to prevent the swelling of the brain from resulting in a loss of blood flow to the brain: remove the skull. This hideous sounding treatment has been shown to make no difference at all in the long run: people that have sustained brain injuries that are going to cause brain death eventually go on to die, while the people that were going to survive with conventional management survive as they would have anyway. If anything, it is more common that heroic, extraordinary means are used to keep the patient's heart beating, so that they can potentially donate organs when patient's life is clearly not salvageable. Brain dead is dead. In reality, you must be "more dead" to be brain dead than is necessary to be declared dead. As weird as this sounds, you are officially dead when a licensed physician declares you dead -- you are brain dead when a complex set of conditions are satisfied that vary from state to state and from hospital to hospital. Commonly, this involves radiological testing to determine lack of blood flow to the brain, and clinical conditions that include normal body temperature, normal blood pressure, lack of barbiturate sedatives in the blood, and more. In many situations, a patient cannot meet the criteria for brain death -- even though they are in fact dead. In these cases, the patient is declared dead and that is it. My point is that there are enough safeguards in the system to prevent any bias from entering into the care of the patient before they are declared brain dead. In addition, the teams involved with organ procurement have no role in the care of the patient until after they are declared dead. Unfortunately, I have still heard this myth expressed quite often. We need to work on finding ways of easing the public's concern about the issue. Jeff Punch Transplantation Surgery University of Michigan jeff.punch@umich.edu --------------------------------------------------------------------------- 2. Looking for a Transplant Center ---------------------------------- When looking for a transplant center, you should realize that many excellent places exist. Gather all the information you can. Ask for names of other patients and talk to them. Ask these patients if they know of unhappy patients, and try to contact them. Transplant patients are generally willing to talk about their experiences. Ask the transplant center staff about the waiting times, the patient and graft survival rates, and the number of transplants done per year. Transplant surgeons are generally willing to talk about these issues. Look at all these factors as well as your own convenience. Yes, for a "gift of life" the extra added effort may be worth traveling to a center you like, but don't assume a distant center is best merely because it is hard to get to. Also, don't focus TOO much on the numbers: use them not to specifically rank centers but to rule out places that seem sub-par. You should realize that a center that does only twenty transplants a year, while it may be an excellent place, can be devastated by bad luck statistically. Each lost graft can cut the graft survival down by 5%. If over time, a center averages three lost grafts a year, but by chance, they lose 5 or 6 grafts in one year, it may make an excellent center look terrible. The reverse can happen with very good results from a small center. They may be just one patient away from having three graft losses in a row, and their above average statistics will plummet. Also, many times a lower graft survival just indicates that a particular center does more high risk patients, not that they are any worse a transplant center. So use survival statistics with caution and in conjunction with all the rest of the information that you can find. Good luck. Jeff Punch Transplantation Surgery University of Michigan jeff.punch@umich.edu --------------------------------------------------------------------------- 3. Does my religion approve of organ donation? ---------------------------------------------- See also: http://www.transweb.org/qa/qa_don/religion.htm An often-heard question when organ donation is being discussed is: "Does my religion approve?" Recently the New York Regional Transplant Program published the views of major religion on the subject. Here are those positions. AMISH...Approved if there is a definite indication that the health of the recipient would improve, but reluctant if the outcome is questionable. BUDDHISM...Donation is a matter of individual conscience. CATHOLICISM...Transplants are acceptable to the Vatican and donation is encouraged as an act of charity. CHRISTIAN SCIENCE...No position, leaving it to the individual. GREEK ORTHODOX...No objection to procedures that contribute to restoration of health, but donation of the entire body for experimentation or research is not consistent with tradition. HINDUISM...Donation of transplant is a individual decision. ISLAM...Moslems approve of donation provided the donors consent in writing in advance and the organs are not stored but are transplanted immediately. You can also read an article on donation posted at the Islamic Center of Southern California. JEHOVAH"S WITNESS...Donation is a matter of individual conscience with provision that all organs and tissues be completely drained of blood. JUDAISM...Jews believe that if it is possible to donate an organ to save a life, it is obligatory to do so. Since restoring sight is considered life saving, this includes cornea organ transplantation. PROTESTANTISM...Encourage and endorse organ donation. MORMON...Donation of transplants is an individual decision. QUAKER...Donation or transplants is an individual decision. So while there are variations in specific views, it is clear that major religions of the world do in FACT PERMIT, ALLOW and SUPPORT transplantation and organ donation. I am passing this information to all on the subscribers of the net in hope that it will aid you in your discussions with friends on the importance of organ donations. Stan Simbal slats@j51.com --------------------------------------------------------------------------- 4. A More Technical Explanation of ABO Organ Matching ----------------------------------------------------- In the case of liver, heart and lung transplants no 'matching' is done except for blood group (O,A,B,AB) and organ size. An O organ can be used in an O, A, B, or AB patient, whereas, an O patient can only receive an O organ. The reason it works this way is because cells have proteins for the blood group on their surface such that: * AB patients have both A and B proteins * A patients have A but not B protein * B patients have B but not A * O patients have neither protein. If a patient lacks particular proteins, they develop antibodies to the ones they are lacking (the reason for this is unclear): * AB patients develop no antibodies * A patients develop antibodies against B * B patients develop antibodies against A * O patients develop antibodies against A and B proteins. Now in practice, if a patient has a transplant with an organ that has proteins on it (say an A organ that has A proteins on it) and that patient already has antibodies against that protein (say a B patient that naturally has antibodies against A proteins) the organ will fail very quickly (within minutes). So if the B patient gets transplanted with an A kidney, it will not function and be promptly rejected (by antibodies against B protein). This makes O a universal donor and AB a universal recipient. For reasons of fairness, organs are allocated primarily to their own blood group. Otherwise, the O patients would only have access to a fraction of the organs, while AB patients would have access to all organs. Nevertheless, there are some inequities in the waiting times on particular blood group lists. Finally, what I have just explained does not seem to make much of a difference in the case of liver transplants; the reason for this is unclear. In other words it is known that one can use "blood group incompatible" livers (an A liver in a B patient) with success rates almost as good as blood group identical livers. We still use blood group identical livers when at all possible because the success rate is higher overall. The allocation schemes for organs takes these principles into account. Jeff Punch Transplantation Surgery University of Michigan jeff.punch@umich.edu --------------------------------------------------------------------------- 5. What is chronic rejection? What is being done about it? ---------------------------------------------------------- There are three general forms of rejection: hyperacute, acute, and chronic. "Hyperacute" rejection occurs within minutes of transplantation due to antibodies in the organ recipients blood stream that react with the new organ and result in organ failure within the first hours after transplantation. The kidney and heart are most susceptible to this problem, the liver is relatively resistant. Hyperacute rejection has not been sufficiently studied in pancreas or lung transplantation. Cross matches are done between a particular kidney and a potential recipient of that kidney to decrease the likelihood that hyperacute rejection will occur. "Acute" rejection generally occurs in the first 6 to 12 months after transplantation. Lymphocytes from the thymus (t-cells) are blamed for causing acute rejection. For most organs, the only way to show unequivocally that rejection is occurring is by biopsy of that organ. For practical reason, however, biopsies are not always done when acute rejection is suspected. In some circumstances treatment for rejection is begun and a biopsy is performed at a later date if the organ doesn't seem to be improving. This strategy varies from organ to organ and transplant center to transplant center. The diagnosis and treatment of acute rejection can be extremely difficult at times. Chronic rejection is less well defined than either hyperacute or acute rejection. It is probably caused by multiple factors: antibodies as well as lymphocytes. The definitive diagnosis of chronic rejection is again generally made by biopsy of the organ in question. The heart is an exception to this generalization: chronic rejection in heart grafts is felt to be manifest by accelerated graft atherosclerosis. In other words, the transplanted heart rapidly develops "hardening of the arteries". Kidneys with chronic rejection have fibrosis (scarring) and damage to the microscopic blood vessels in the substance of the kidney. Livers with chronic rejection have a decreased number of bile ducts on biopsy. This is referred to as the "vanishing bile duct syndrome". Transplanted lungs with chronic rejection are said to have "bronchiolitis obilterans" a scarring problem in the substance of the lung. To date, most research has focused on graft survival for the first three years. It is not that we, the physicians involved with transplantation, don't care about long term results. The long term problem is simply tough to tackle. Animal models exist but they do not perfectly reflect what goes on in humans. Most studies on people that look at long term outcome are not well "controlled", so their conclusions are nebulous. To be "controlled" a study needs to have two groups of patients, one that received a particular treatment and one that didn't. The best kind of controlled study is prospective and randomized, meaning the decision as to which treatment the patient has is decided before the treatment begins in a random fashion. This eliminates many biases that otherwise appear. Theses studies take very long time periods, are extremely difficult and labor intensive and require large numbers of patients to look at long term results. More typically, studies use "historical controls" meaning that one group, say patients transplanted from 1987 to 1990 is compared to another group of patients transplanted at a different time point, like 1984 to 1986. The problem with such studies is that so many things changed between the two groups. Techniques change: better perfusion solutions for the organs, quicker, more accurate methods of measuring blood levels of cyclosporine ("Sandimmune"). New agents, like FK506 (tacrolimus or "Prograf") are introduced and other agents are removed from the market. Understanding of common infections in transplant patients improves; this improves overall results even though the improvement wasn't exactly related to what immunosuppression they received. The studies therefore get muddled over the years. To look at ten year results today we have to look at transplants that were done in 1985 when techniques were significantly different in many ways from the way we do things now. So the bottom line is that much of what we do today is not firmly based on actual evidence that it is the one best treatment. This explains why different transplant centers do different things: their particular experience has been biased by the particular patient population. Fortunately, much work is currently being done on chronic rejection, both in the lab and clinically. Some new agents not yet in use clinically look to be particularly effective at combating chronic rejection. As these new drugs appear long term graft survival will hopefully increase. In many situations, the current standard treatment for chronic rejection is retransplantation. This approach is not satisfactory, however, because it makes the existing organ shortage worse, and retransplantation is more difficult from a surgical perspective. Jeff Punch Transplant Surgery University of Michigan jeff.punch@umich.edu --------------------------------------------------------------------------- ======================================================================== IV. Organizations Promoting Donation ======================================================================== (See also Part 2) The Mickey Mantle Foundation Mickey's Team Get your free Mantle Foundation donor card now! Call 1-800-422-9567 or 1-800-477-MICK or Email transplant.webmaster@umich.edu Be sure to include: your name, complete mailing address, and the number of cards you would like (limit 5). Mickey's personal message to each of us, printed on the Mickey's Team donation cards, reads as follows: "The best gift I ever got was on June 8, 1995 when an organ donor gave me and five other patients at Baylor University Medical Center in Dallas the organs we needed to live. I guess you could say I got another time at bat. "Now I want to give something back. I can do that first by telling kids and parents to take care of their bodies. Don't drink or do drugs. Your health is the main thing you've got, so don't blow it. "Second, think hard about being an organ and tissue donor if the time ever comes. Sign this card, carry it with you, and let your family know how you feel. "Thanks for your prayers and kindness. I'll never be able to make up all I owe God and the American people. But if you will join me in supporting the cause of organ and tissue donation, it would be a great start." Track star Carl Lewis writes about Mickey's Team --------------------------------------------------------------------------- About the Mantle Foundation Background: Given a few precious extra weeks of life because of a liver transplant, Mickey Mantle will be remembered for something more than his heroic baseball career. This baseball great, considered a hero by many, was overwhelmed by the selfless gift of a liver from a stranger. Learning of the critical need for organ and tissue donation, Mickey became determined to give something back at the end of his life. He directed that The Mickey Mantle Foundation be established to promote organ and tissue donation. Mickey had expected to lead Mickey's Team to the complete elimination of deaths due to the shortge of organs and tissue, but this was not to be. Our challenge is to make his dream come true. Assessment: The critical shortage of organ and tissue donors results from the American public's being uninformed about the critical need, as well as the process, of donation. The decision to be a donor is difficult for many Americans. However, we believe that the American public will embrace organ and tissue donation if the decision-making opportunity and the information is made more readily available. Accessability and education are the keys. The Mission: Our initial mission is the complete elimination of the loss of life or the loss of quality of life due to the lack of organs and tissue available for transplantation. The Plan: We will work in concert with professionals in the donation and transplantation community to accomplish this mission. Our strategy - continuous public distribution of information relevant to organ and tissue donation, along with the distribution of millions of donor cards. Mickey's Team will be comprised of many from all walks of life. We must have those with the financial tools, the media tools, the educational tools, and the medical tools on this team! Our message will be factual, inspirational, and educational. We must capture the minds and hearts of our fellow Americans. We must make it easier for families and loved ones to make this important decision during times of good health and clear thinking. We believe the American people will say "yes!" to organ and tissue donation - Let's give them the opportunity to join Mickey's Team. The Mickey Mantle Foundation 8080 N. Central Expressway, Suite 800 Dallas, Texas 75206-1887 Phone 800-477-MICK (6425) or (214) 891-8890 Fax (214) 691-0418 --------------------------------------------------------------------------- Other pages about Mickey Mantle * "Memories of Mickey", a multimedia gallery at ESPNET SportsZone * Mantle Memorial at the official National Baseball Hall of Fame and Museum page * Steven Louie's unofficial New York Yankees home page, with a page about Mickey Mantle's stats * Two fans' tribute pages: Maggie's and Michael Meister's. The Coalition on Donation ------------------------- is a nonprofit alliance of numerous professional, patient, health, science, transplant and voluntary organizations. Its purpose is to increase public awareness of organ and tissue donation, correct misconceptions about donation, and create a greater willingness to donate. To contact the Coalition, please write to: Coalition on Donation 1100 Boulders Parkway, Suite 500 P.O. Box 13770 Richmond, VA 23225-8770 or call 1 - 800 - 355 - SHARE (7427) FAX: 804-330-8593 Local Coalitions on Donation (listed in alphbetical order by state) --------------------------------------------------------------------------- Alabama Coalition for Organ and Tissue Donation Chuck Patrick 205-731-9200 --------------------------------------------------------------------------- Alaska Donor Program Tracy O'Connell 907-562-5433 --------------------------------------------------------------------------- Arizona Coalition on Donation Bob Miller 602-274-1035 --------------------------------------------------------------------------- Donation for Life (CA) Carolyn Berry 415-837-5888 --------------------------------------------------------------------------- San Diego Coalition on Donation Jim Cutler 619-294-6263 --------------------------------------------------------------------------- Southern California Coalition on Donation Gloria Bohrer 619-756-3136 --------------------------------------------------------------------------- Transplant Council of the Rockies Pat Brewster 303-337-3100 --------------------------------------------------------------------------- Connecticut Coalition for Organ & Tissue Donation Molly Sherman 203-232-6054 --------------------------------------------------------------------------- MidAtlantic Coalition on Donation (DC, MD, VA) Irelisse Fontanez 703-641-0100 --------------------------------------------------------------------------- Georgia Coalition on Donation Tina Cone-Roland 404-266-8884 --------------------------------------------------------------------------- Hawaii Coalition on Donation Maryann Mazzola 808-599-7630 --------------------------------------------------------------------------- Idaho Donor Network Alex McDonald 801 -521 - 1755 --------------------------------------------------------------------------- Illinois Coalition on Donation Jerry Anderson 312-431 -3600 --------------------------------------------------------------------------- IN-TOUCH (IN) Stan Meadows 317-685-0389 --------------------------------------------------------------------------- Iowa LifeGift Committee Reginald Morrow 319-337-7515 --------------------------------------------------------------------------- Coalition on Donation (KY) Jenny Miller 606-278-3492 --------------------------------------------------------------------------- New England Coalition on Donation (MA, ME, NH, RH, VT) Betsey Strock 617-244-8000 --------------------------------------------------------------------------- Michigan Coalition on Donation Marilyn Lindenauer 313-764-3262 --------------------------------------------------------------------------- Upper Midwest Coalition on Donation (MN, ND, SD) Wendy Muilenburg 612-623-4757 --------------------------------------------------------------------------- Ohio Transplant Recovery Council Sue Janssen 216-791-9700 --------------------------------------------------------------------------- Donor Awareness Coalition (TX) Nancy Johnson 214-879-6210 -------------------------------------------------------------------------- Oklahoma Donor Coalition Phil Van Stavern 800-241 -4483 --------------------------------------------------------------------------- Oregon Donor Program Mary Jane Hunt 503-494-7888 --------------------------------------------------------------------------- Partners for Life Pat Kail 412-963-3550 --------------------------------------------------------------------------- Coalition on Donation (PA) Kevin Sparkman 215-543-6391 --------------------------------------------------------------------------- Mid-America Coalition on Donation (MO) Barry Freedman 3l4-99l-l66l --------------------------------------------------------------------------- Organ and Tissue Donor Task Force of Nebraska, Inc. Jane Taylor 402-572-3540 --------------------------------------------------------------------------- New Mexico Coalition on Donation Maria Sanders 505-843-7672 --------------------------------------------------------------------------- Council for Organ and Tissue Donation (NY) Barbara Bianchi 716-275-9157 --------------------------------------------------------------------------- Greater New York Coalition on Donation Noel Mick 212-980-6700 --------------------------------------------------------------------------- Matter of Life Consortium (NC) Jim Hunter 704-355-5620 --------------------------------------------------------------------------- Houston Coalition on Donation Kent Guida 713-523-4438 --------------------------------------------------------------------------- Vital Alliance (TX) Jim Hayes 210-614-7030 --------------------------------------------------------------------------- Utah Coalition for Organ, Eye and Tissue Donation Alex McDonald 801-521-1755 --------------------------------------------------------------------------- Virginia Coalition on Donation Barbara Bingham 804-786-6970 --------------------------------------------------------------------------- Northwest Donor Program (WA) Mark Hatfield 206-889-8433 --------------------------------------------------------------------------- Inland Northwest Coalition on Donation Candy Wells-Zabawa 509-455-3131 --------------------------------------------------------------------------- The Wendy Marx Foundation ------------------------- The Wendy Marx Foundation for Organ Donor Awareness, an all volunteer not-for-profit organization, was established in 1990 with a single purpose: to increase public awareness of the need for organ and tissue donation. In the United States, there is a desperate need for such donations. Each day, eight Americans die waiting for an organ transplant, and thousands of others wait for an available organ. The story of the Wendy Marx Foundation begins with the story of Wendy Marx, (http://www.transweb.org/people/recips/experien/living_proof.html) a native of Rye Brook, NY, and a graduate of Duke University, now residing in San Francisco. In late 1989, when Wendy was 22, she was hit with a severe case of viral hepatitis B, which destroyed her liver. Her life was saved by a liver transplant. The Marx family, joined by family friend and Olympic champion Carl Lewis, have been committed to the Foundation and its cause ever since. To date, Foundation accomplishments include support of the U.S. Transplant Games; funding of a medical fellowship for doctors who want to learn more about organ donation and transplantation; development of the U.S. Sports Council on Organ Donation, which includes athletes, sports journalists and collegiate and professional coaches; creation of a Dribblin' for Donors program with Louisiana State University and Coach Dale Brown; and the production and distribution of a video on organ donor awareness targeting junior high school students and their families. To contact us, please write to: The Wendy Marx Foundation 322 South Caroline SE, Suite 201 Washington, DC 20003 You can also e-mail Wendy Marx at WEMarx@aol.com. Part1 - Part2 - Part3 - Part4 [ By Archive-name | By Author | By Category | By Newsgroup ] [ Home | Latest Updates | Archive Stats | Search | Usenet References | Help ] Send corrections/additions to the FAQ Maintainer: mike_holloway@hotmail.com (Michael Holloway) Last Update November 14 1999 @ 02:49 AM