The "rising from brain death" myth ---------------------------------- One of the requirements for solid organ donation from cadavers is that blood remain circulating for a number of hours. This requires a patient that has been declared brain dead, total loss of brain stem function, but whose heart can be kept beating. Unfortunately, the media, and even, apparently, some medical professionals, are in the habit of using the term "brain dead" to describe other conditions that are properly referred to as vegetative state and coma. A patient can recover, to one degree or another, from a vegetative state or a coma. As a result, when next of kin are approached with a request for organ donation after being told that the patient is brain dead they often mistakenly believe that the patient might recover and insist on waiting till the heart has stopped beating and the patient is no longer a candidate for donation. Myths are widely circulated of patients declared brain dead who recover just as they are about to be used for organ donation. This has never happened. Inaccurate use of terms has probably contributed to myths of resurrection from brain death, but the linkage to organ donation is simply malicious. The Partnership for Organ Donation (see section VII), a volunteer organization active in altering the way donation requests are made, is urging professionals to avoid the use of the term "brain death" when discussing the declaration of death with the family since its unrealistic to expect that the term can be explained to them, and misinformation corrected, while they are grieving. Freeman JW Confusion and misunderstanding of some of the terms and practices readily employ in medicine [editorial] S D J Med 1991 May;44(5):123 Pallis C ABC of brain stem death. The position in the USA and elsewhere. Br Med J (Clin Res Ed) 1983 Jan 15;286(6360):209-10 Young B Blume W Lynch A Brain death and the persistent vegetative state: similarities and contrasts. Can J Neurol Sci 1989 Nov;16(4):388-93 Oboler SK Brain death and persistent vegetative states. Clin Geriatr Med 1986 Aug;2(3):547-76 The black market myth: ---------------------- In all the time that the rumors of a black market, kidnapping and murder of children, organ-swiping, and other atrocities have been circulating (since at least 1982 when cyclosporin began to be widely used), there has never been any evidence to substantiate any of them. Any rumor regarding a black market in organs, or organ piracy, needs to be evaluated in light of the necessity of matching the organ and recipient in order to avoid rejection by the recipient's immune system. One can not take any old organ and just put it anywhere you please. A rather complex system has been set up in the US to handle matching and distribution. Its unlikely that any number of evil people in the US or abroad will be able to duplicate such a system in secret. Adding these simple facts with the necessity of having many highly skilled medical professionals involved, along with modern medical facilities and support, makes it plain why rumors of the involvement of murder, violence and organized crime in organ procurement can not be given any credence. These stories have done great damage to the public's appreciation of the need for organ donation. Within the last several years, human rights organizations have started to pick up and spread black market myths. They seem to have confused unethical practices abroad which have been known and protested for years (India's payment system for live kidney donation and China's use of organs from executed convicts) with implausible stories of secret organ swiping mafias. Their reliance on ill-informed sources of information has damaged appreciation for real human rights and ethics problems related to transplantation in Asia and developing countries. For reference see "Organ Trafficking Myths", a paper by Todd Leventhal, USIA Senior Policy Officer, and "UNOS paper on organ theft myths", available through the Yale biomedical gopher (see above). The Latin American baby snatching myth -------------------------------------- These myths have been traced back to at least 1986 when Pravda in the Soviet Union carried allegations of children being taken to the US for adoption and then being murdered for their organs. There are several variations and they've become quite popular in countries where the civil unrest they foster tends to favor one political or military faction. As described above, all of them require an ignorance of what's involved in transplantation. No evidence is ever produced, just the assertion that its being investigated. Within the last two years some individuals concerned about human rights violations in Latin-America have become infatuated with these rumors, apparently because one Central-American government official or another had told them that they were true, though again no evidence is produced. This is very unfortunate since Amnesty International has started to quote some of the more irresponsible writings on the subject. Further information is available from Todd Leventhal at the US Information Agency. E-mail: tleventh@usia.gov Phone: (202)619-5673. Fax: (202)205-0655. They've been following the body parts rumors for seven years. References and additional information: Leventhal, THE "BABY PARTS" MYTH: THE ANATOMY OF A RUMOR. UNOS Update, May 1994 (also available from Todd Leventhal tleventh@usia.gov and the Yale biomedical gopher after 6/1/94) Pierce, Burdick face accusers in baby parts allegations, UNOS Update, June 1993 (available at the Yale biomedical gopher) UNOS Fights 'Baby Parts' Rumor in Geneva. UNOS Update, May 1994 Organ Trafficing perspective from UNOS, UNOS press release available from UNOS and soon to be posted at the Yale biomedical gopher site. Foreigners Attacked in Guatemala. New York Times, 4/5/94, pg. A10. Holden, Constance. Curbing Soviet Disinformation. Science Nov 4, 1988, v242, p. 665 The racism myth: ---------------- The chance of getting a good organ or tissue match is more likely within an ethnic group. Since minorities in the US have traditionally been less likely to participate in organ and tissue donation, the chances of a patient from one of these groups finding a match is decreased. The urban legend, of course, is that organ distribution discriminates by race and, therefore, donation should be refused since it will punish the oppressors. The tragic reality is that the people they are hurting the most by doing this are the people within their own ethnic group. References: Kallich JD. Wyant T. Krushat M., The effect of DR antigens, race, sex, and peak PRA on estimated median waiting time for a first cadaver kidney transplant. Clinical Transplants. :311-8, 1990. Pike RE. Kahn D. Jacobson JE., Demographic factors influencing consent for cadaver organ donation. South African Medical Journal. 79(5):264-7, 1991 Mar 2. Arnason WB., Thomas Jefferson Memorial Church, Unitarian Universalist, Charlottesville, Va. Directed donation. The relevance of race. Hastings Center Report. 21(6):13-9, 1991 Nov-Dec. Plawecki HM. Plawecki JA., Improving organ donation rates in the black community. Journal of Holistic Nursing. 10(1):34-46, 1992 Mar. Mozes, Hayes, Tang Impediments to Successful Organ Procurement in the "Required Request" Era: An Urban Center Experience Transplantation Proceedings 1991 October; 23(5):2545 The preferential treatment on the US waiting list myth ------------------------------------------------------ Since patients are not listed by name in the regional and national lists, its hard to imagine how this is supposed to take place. It is likely that people taken in by this myth are having a hard time distinguishing preferential treatment on the list (which doesn't exist) with the problems of simple access to health care in general. This is a problem with the entire US health care system and has nothing to do with how patients are treated once they are on the transplant waiting list. ====================================================================== ==== VI. Organ donor awareness postage stamp campaign ====================================================================== ==== A petition is being circulated for a postage stamp to promote organ donor awareness. A similar stamp promoting blood donation had a large impact on increasing blood donation. Copies of the petition are available from the address below but any sheet of paper with names and addresses will do. The following appears at the head of the petition sheet: ----------------------------------------------------------------------- -- December 31, 1993 Revision No. 11 225,859 signatures secured Ed Heyn, Chairman of Organ Transplants of Southwestern Michigan Support Group, has begun a campaign to create a United States postage stamp to promote organ donor awareness. Eds's group must receive a positive recommendation from the Citizen's Stamp Advisory Committee before they go to the Postmaster General. Please sign this support signature sheet and pass it around. Upon completion please return it to the address on the bottom of this sheet. This stamp will encourage donor awareness, donor awareness saves lives. Please return to Ed Heyn, 8637 Ruggles Rd. Baroda, MI 49101 ----------------------------------------------------------------------- --- Sources of the "Don't take your organs to heaven. Heaven knows we need them here" bumper stickers and other materials: The Aurora Group in Arkansas: 501-2-CHANCE. The New York Regional Transplant Organization: 212-870-2240 and 212-861-7370 UNOS (see below). ====================================================================== ==== VII. Sources of information on organ donation and transplantation -Patient support groups ====================================================================== ==== UNOS ---- From UNOS quick info sheet: ------------------------------------------------ The United Network of Organ Sharing, located in Richmond, Virginia, administers the National Organ Procurement and Transplantation Network (OPTN) and the U.S. Scientific Registry for Organ Transplantation under contracts with the US Department of Health and Human Services. UNOS is responsible for promoting, facilitating and scientifically advancing organ procurement and transplantation throughout the United States while administering a national organ allocation system based on scientific and medical factors and practices. UNOS members include every transplant program, organ procurement organization and tissue typing laboratory in the United States. Policies governing the transplant community are developed by the UNOS membership through a series of regional meetings, deliberations at the national committee level and final approval by a 32 member board of directors, equally represented by physicians and nonphysicians. UNOS has formulated policies to ensure equitable organ allocation to patients registered on the national waiting list. These policies forbid favoritism based upon political influence, race, sex of financial status; they rely, instead, upon medical and scientific criteria. ------------------------------------------------ "UNOS Update" June '93, July/August `93 and Sept/Oct `93 issues, the UNOS Ethics Committee whitepaper reports on alternative organ donation and tables of recent UNOS statistics on organ transplantation, are available through the Yale biomedical gopher (see above). The UNOS 800 number for organ donation information, pamphlets, organ donor cards, bumper stickers, etc., is: 1-800-24-donor. To request transplantation statistics, UNOS Update, or ethics committee reports call (804) 330-8500. UNOS Update gratis subscription requests can also be made by writing to Esther Benenson, Managing Editor, UNOS Update, P.O. Box 13770, Richmond, VA 23225-8770. A list of educational material is also available. Some of these require a fee. You can also send a request for information or donor education materials to newmanjd@comm5.unos.org. The Partnership for Organ Donation, Inc. ---------------------------------------- From "Solving the Organ Donor Shortage": "The Partnership for Organ Donation, Inc. is an independent nonprofit organization dedicated to solving the desparate shortage of organs available for transplantation in the United States. "The Partnership believes the gap between eligible and actual donors can be closed, and donation substantially increased, by implementing an organized, proactive, and systematic program which focuses on three key audiences: health car professionals, organ procurement organizations, and the American public." "Solving the Organ Donor Shortage" is a very concise and detailed description of the shortage, the problems contributing to it, and how the Partnership believes it can be combatted, complete with bibliography. A copy can be obtained from: The Partnership for Organ Donation 100 Oliver St. International Place Boston, Massachuetts 02110 telephone:(617)330-8650. fax:(617)330-8651 Support groups -------------- TRIO ---- The Transplant Recipients International Organization is a network of local support groups that meet for the benefit of members and to promote organ donor awareness. Their national headquarters can put you in touch with your local chapter: (412) 687-2210. They also have pamphlets and organ donor cards available. Liasons for Life Support Group ------------------------------ 800-543-6391 c/o DE Valley Transplant Program Newly reorganized umbrella organization to support and encourage support groups in area served by DE Valley Transplant Program. The DE Valley Transplant Program is the regional procurement organization for Delaware and can be reached at: DE Valley Transplant Program 800-Kidney1 2000 Hamilton Street, Suite 201 Philadelphia, PA 19130-3813 Diamond State Organ Donor Association ------------------------------------- PO Box 471 800-464-4357 Dover, DE 19903 Main emphasis is on education and donor awareness. Delaware Motor Vehicle Dept. recently began supporting a campaign for Donor cards and Green Dots on driver's licenses. Meetings are held in both Seaford and Stanton, DE. Long distance love ------------------ The Sept/Oct `93 issue of UNOS Update carried a story about a pen-pal support network for transplant recipients. The address is: Long Distance Love, P.O. Box 2301, Ventnor, NJ 08406. A $6 donation is requested. Local transplant centers and OPOs --------------------------------- Local Organ Procurement Organizations (OPOs) often have education and promotion activities. A local transplantation center will be able to give you information on this. Books and Magazines ------------------- Encore: Another Chance at Life A slick magazine published by Chronimed Pharmacy "exclusively for organ transplant patients, their families and friends." Apparently published 4 times a year. "This publication provides a broad look at many issues surrounding organ transplantation and encourages personal stories and feedback from readers." For a gratis subscription write to: Chronimed Publishing, P.O. 46181, Minneapolis, MN, 55446-9920 "Transplant Success Stories" Contains histories of recipients and donor families. Edited by Paul I. Terasaki and Jane Schoenberg, 1993 Published by the UCLA Tissue Typing Laboratory Order $5.00 a copy: UCLA Tissue Typing Laboratory 950 Veteran Avenue Los Angeles, CA 90024 Telephone: (310) 825-7651 FAX: (310) 206-3216 "Taking Heart" by A.C. Greene. 1990, Simon & Schuster. A first person account by a heart transplantee. ====================================================================== ====== VIII. European professional organizations and patient support groups ====================================================================== ====== If anyone would care to contribute information on transplant related topics in other countries, please send it to mike.holloway@stjude.org, or post it to bit.listserv.transplant. UNOS-like Organizations and Transplant Programs in Other Countries ------------------------------------------------------------------ Metro Organ Retrieval, Toronto General Hospital 416/390-3587 Metro Transplantation, Montreal, Quebec 514/527-0047 Foothills Hospital, Calgary, Alberta 403/283-2243 Victoria General Hospital, Halifax, Nova Scotia 902/428-2222 Eurotransplant Foundation 011-31-071-268008 University Hospital Rijnsburgerweg 10 2333 AA Leiden, The Netherlands Attn: Bernard Cohen, Director UK Transplant Center 011-44-272-507-777 úÿ (continued next message) ÿ@FROM :mhollowa@epo.som.sunysb.edu ÿ@SUBJECT:bit.listserv.transplant FAQ, Organ transplantation newsgroup ÿ@PACKOUT:10-23-94 úÿ(Continued from last message) Southmead Rd. Bristol BS10 5ND England Scandia Transplant 011-46-8-7465-723 Dept. of Clinical Immunology Huddinge Hospital Huddinge, Sweden Attn: Dr. Hakan Gobel France-Transplant 011 -33(1)42.06.94.90 Hopital Saint Louis 1, av. Claude Vellefaux 75475 Paris Cedex 10 France Attn: Pr. Jacques Hors, Secretary General Center Hosp Lyon Sub, Lyon University, Division of Nephrology, Pav 2F, 69310 Pierre Benite, Lyon Ph: (33)78 86 1309 Fax: (33) 78 861941 Hospital Edouard Herriot, Transplant Unit, Pl D'Arsonval, 69347 Lyon Cedex 03 Ph: (33) 78 540371 Fax: (33) 72 3370011 Organizacion Nacional de Trasplantes 011-34-1-3142406 Central Organ Exchange Coordination Office 3142474 Sinesio Deloado 8 3142488 28029 Madrid 3142568 Spain 3142634 Attn: Dr. Rafael Matesanz, National Transplant Coordinator 3142669 Organizacion Nacional de Trasplantes 011-34-3-4125454 Coordinating Office for International Organ Exchange 4120969 Gran Via de las Corts Catalans 5913398303 I.C.S. Building, 5th Floor 08007 Barcelona Spain Attn: Dra. Rosa Deulofeu Latvian Transplantation Center 011-007-0132-614210 13, Pilsonu str. 619091 P. Stradin Republic Clinical Hospital 613474 226002, Riga Latvia Swiss Transplant National Reference Laboratory for Histocompatibility Hop i tat Can tonal Uni versi taire , Geneva Switzerland Attn: M. Jeannet or C. Goumaz Hungary Transplant Budapest 011-36-1-1334-143 1143-635 Szeged 011-36-06-62-21643 Dabrecen 011 -36-06-52- 18855 Italy-CCST 0l 1-39-91-651-7692-4 International Coordinating Center 011 -39-91 -543-554 Cod. 32118 Unsversita di Roma ZLa Sapienza" II Clinica Chirurgica Viale del Policlinico 00161 Roma Italy The European Transplant Coordinators Organization (ETCO) -------------------------------------------------------- Contact: Linda Trekels, ETCO Executive Office, Steenveldstraat 18, B-3210 Linden, BELGIUM. Fax: +32-16-622-981. Dialysis and kidney transplant support groups: --------------------------------------------- The list below was compiled by Gerald Huber (Gerald.Huber@geographie.uni-regensburg.de). Germany: DIATRA Verlag GmbH Postfach 12 30 D-65332 Eltville/Rhein Germany Phone: (06123) 73478 Fax: (06123) 73287 Austria: Gesellschaft Nierentransplantierter und Dialysepatienten Oesterreichs z. Hd. Hfrat Dr. Herbert Schmidt Neulerchenfelderstr. 10/I/3/17 A-1160 Wien Austria Phone: (0043) 4083818 Switzerland: VNPS c/o Yvonne Guerini-Brunner 7 rte de Founex CH-1291 Commugny Switzerland Phone: 0041/22/7761113 There is also a french SSMIR and an italian ASPIR group under the same adress. Italy (north): Associazione Altoatesina nefropatici Via C. Battisti Str. Nr. 33 I-39100 Bolzano Italy or via the president Florian Mair St-Peter-Weg 19 I-39018 Terlan Italy Phone: (0039) 471/57595 Luxenburg: Association Luaxembourgeoise des Malades Renaux e Transplantes a.s.b.i BP 2713 L-1027 Luxembourg Louxembourg Vic Christoph, president Phone: 00352/378458 or 44112022 Europe: CEAPIR c/o Patricia Doherty Pembroke Road 156 Ballsbridge Dublin 4 Ireland Phone: 00353-1-689788/9 Fax: 00353-1-683820 ====================================================================== ====== IX. Transplant fundraising ====================================================================== ====== (see also the National Transplant Patient Resources Directory, part 2 of the FAQ) UNOS has a paper-bound booklet entitled "FINANCING TRANSPLANTATION (What Every Patient Needs to Know)." The booklet is "FREE" and a copy can be obtained by calling 1-800-24-DONOR. It is loaded with invaluable information relevant to those individuals considering and/or awaiting organ transplantation. The following is from the BMT Newsletter, November 1993, and reproduced by Kimberly.A.Montgomery.1@ND.EDU with the publisher's permission. Copyright 1993 BMT Newsletter 1985 Spruce Ave. Highland Park, Illinois 60035 708-831-1913 The information is applicable to any kind of transplant fundraising. Two other excellent articles from the BMT Newsletter on organizing fundraising and support are available in the TRNSPLNT archive and at the Yale biomedical gopher (see above). Agencies Provide Fundraising Help --------------------------------- What do you do when you need to raise $10,000 for a bone narrow transplant, but have no fundraising experience? Some BMT patients have turned to groups such as the Organ Transplant Fund in Memphis TN or the Children's Organ Transplant Association in Bloomington IN for help. The Organ Transplant Fund (OTF) was founded in 1983 to raise funds for organ transplant recipients. Since its inception, the group has orchestrated more than 500 successful fundraising campaigns including 100 for bone narrow transplant patients. On average, $200,000 is raised per patient, says national director Suzanne Norman. Initially, a staff person from Organ Transplant Fund meets with the family to identify a fundraising chairperson, and to set up a committee of local volunteers. "We then meet with the volunteers, help them develop a fundraising plan, and show them how to tap into resources in their community quickly and effectively. We provide them with a fundraising packet and ideas for events, as well as access to low-cost products they might want to sell to raise funds such as cookbooks, candy bars, etc." Funds raised through OTF are used solely to pay transplant-related expenses. OTF controls the funds and administers payments directly to the health care provider. In the event of death, funds remain in the patient's account for up to one year to pay transplant-related bills. Thereafter, the funds are transferred to a general account that provides emergency grants and support services for future patients. "Since contributions to the Organ Transplant Fund are tax-deductible. working with us expands the universe of potential contributors," says Norman. "Large corporations, for example, will simply not make a contribution to an individual but they will contribute to a tax-exempt organization." Fundraising guidance is not the only help Organ Transplant Fund provides. '"We offer our families a multitude of support services such as arranging for lodging and transportation to the transplant center, identifying BMT centers that do transplants for their particular disease, negotiating a reduced down payment at the BMT center so the transplant can begin quickly, etc." says Norman. Organ Transplant Fund retains 5 percent of the funds raised to cover administrative costs. "Many patients have told us that our support services, alone, are worth the price," says Norman. The Children's Organ Transplant Association (COTA) also provides fundraising assistance to organ transplant patients, both children and adults. Founded in 1985, the group has conducted more than 150 fundraising campaigns on behalf of organ transplant patients, approximately half of which have been for bone marrow transplant patients, according to COTA executive director David Cain. "The amount of money varies according to the number of volunteers working on the fundraising campaign and the size of the community." says Cain. "Typically, $75,000-$100,000 can be raised in a period of 60-90 days." Like OTF, COTA asks families to identify a network of volunteers who will orchestrate fundraising activities in the community. "We provide them with a fundraising kit, ideas for events, and help with publicity," says Cain. "Depending on the amount of money to be raised, COTA staff may meet with the family or simply provide guidance over the phone." All contributions are deposited in a tax-exempt COTA fund and are used strictly to pay medical expenses. "It's important that the public have confidence that their contributions will be used only for necessary medical expenses," says Cain. "Having the funds controlled directly by COTA rather than the family provides that assurance." COTA's administrative expenses are covered by the interest earned on the accounts into which funds raised for patients are deposited. All funds are invested in government securities, says Cain. "Our goal is not only to raise funds for transplant patients, but to get the community educated and involved in the process," says Cain. "Our emphasis is on having friends and neighbors help each other." To contact the Organ Transplant Fund, phone 800-489-FUND. To contact the Children's Organ Transplant Association, phone 800-366-2682. Life-Core (Oregon), 503-366-9125, also provides fundraising assistance. ====================================================================== ====== IX. Live kidney donor information ====================================================================== ====== The following is a summary of "Donating a kidney to a family member- How primary care physicians can help prepare potential donors" Authors: Michael L. O'Dell, MD Kristi J. O'Dell, ACSW Thomas T. Crouch, MD VOL 89/NO 3/February 15, 1991/Postgraduate Medicine . Kidney Donation Summarized by Katherine Eberle, eberle@gdls.com for the TRNSPLNT FAQ Jan 1994. Preview When a relative needs a kidney to survive, family members often impulsively offer to donate one without stopping to consider the physical, emotional, and financial ramifications, which can be considerable. The family's primary care physician can be very helpful in guiding and educating potential donors and, by arranging for screening to be done in the community, can ease the financial strain. The authors discuss the things a potential kidney donor should consider. The desirability of transplantation is increasing and the supply of cadaveric kidneys falls far short of the demand. So searching for a possible living related donor is becoming more and more common. Much of the preliminary testing required to identify a donor can be easily performed in the potential donor's community, under the direction of the primary care physician in communication with the transplant team. Additionally, the donor's care is aided when the evaluating physician serves as an advocate. Evaluation for Immunologic Match Usually, the first test performed is determination of ABO blood type compatibility. Many physicians follow ABO compatibility testing with HLA typing. Tests required by most centers and a description of results that may prohibit transplantation: TESTS Potential Disqualifying Factor History and Physical Age under 18 or over 55 yr Examination Obesity Hypertension Systemic disorder with potential to impair health Psychiatric disorder Deep vein thrombosis Family history of polycystic kidney disease, diabetes in both parents, hereditary nephritis, systemic lupus erythematosus Laboratory Studies Blood typing Poor match with recipient Complete blood cell count Anemia or blood dyscrasia Automated biochemical Abnormalities indicating analysis significant disease state Screening for diabetes Evidence of diabetes Serologic tests for syphilis Evidence of current infection Hepatitis B surface antigen, Evidence of current antibodies, core antigen infection Human immunodeficiency virus Evidence of current testing infection 24-hr urine collection for Creatinine Diminished clearance Protein Significant proteinuria Calcium Hypercalciuria Oxalate Hyperoxaluria Urate Hyperuricemia Urine osmolality after Inability to concentrate to overnight thirst >700 mOsm/L Urinalysis Unexplained hematuria and/or other abnormality (eg, proteinuria) Urine culture Evidence of urinary tract infection Pregnancy test (where Positive for pregnancy applicable) HLA typing Poor immunologic match with recipient Radiographic Studies Chest x-ray film Evidence of significant disease Intravenous urography Anatomic abnormality Renal arteriography Anatomic abnormality Other Studies other significant abnormality Tuberculin and Candida skin Evidence of active tests tuberculosis or anergy Multiple gated acquisition Evidence of ischemic heart stress test (in men over age disease 45 yr and women over 50 yr) Pulmonary function testing Significant abnormality in (in smokers) lung function If the potential recipient is a reasonable match, renal angiography is performed to determine which of the donor's kidneys is the more accessible and the better anatomic match and to screen for abnormalities that might preclude uninephrectomy. In general, the left kidney, with its longer renal vein, is selected. Potential donors should also be screened for psychosocial risk factors. An evaluation of the stability of the individual and the family and the financial impact of donation should be undertaken. This is often performed by social workers. An important consideration is psychosocial evaluation is whether the potential donor is being coerced into the donation. Purchase of a kidney is illegal in the United States. Occasionally, evaluators discover potential donors who are unwilling to donate and yet are being significantly pressured to do so by family members. Such persons should be skillfully assisted in resisting such coercion, perhaps by honestly describing them as "not an appropriate match." Potential Disqualifying Psychosocial Factors in Kidney Donor: Evidence of significant coercion to donate Evidence that donation would cause extreme financial hardship Evidence that spouse is strongly opposed to donation Evidence of significant psychiatric disturbance Often, family members spontaneously decide to donate a kidney before they have had an opportunity to consult medical personnel. They make their decision on moral rather than technical grounds, often describing it as "the right thing to do" or their "calling." Effects on the Donor PHYSICAL EFFECTS - The actual risks to the donor from uninephrectomy may be divided into short- and long-term. Short-term risks are those typically seen with this major surgical procedure (ie, pulmonary embolus, severe infection or sepsis, renal failure, hepatitis, myocardial infarction, splenic laceration, pneumothorax). Estimates of the mortality rate are generally less than 0.1% and of significant complications less than 5%. Less than 1% of donors have any permanent disability. Long term risks are controversial and largely unknown. In one third of all donors, nonprogressive úÿ (continued next message) ÿ@FROM :mhollowa@epo.som.sunysb.edu ÿ@SUBJECT:bit.listserv.transplant FAQ, Organ transplantation newsgroup ÿ@PACKOUT:10-23-94 úÿ(Continued from last message) proteinuria develops. This finding has led to a recommendation that donors restrict their protein intake after uninephrectomy. In addition, donors experience a slight rise in the serum creatinine level, which is also nonprogressive. PSYCHOSOCIAL EFFECTS - These risks to potential and actual donors may also be short- or long-term. Potential donors who choose not to donate may experience guilt about their decision or be ostracized by the family, although detailed studies of potential donors who choose not to donate are few. About one fourth of those who choose to donate experience moderate to severe financial difficulties. Even though the cost of the evaluation and procedure is borne by the federal End Stage Renal Disease Program, unreimbursed financial losses resulting from job absence and travel can be significant. Most authorities cite a return to work 4 weeks after uncomplicated uninephrectomy. Some centers use donor- specific blood transfusions as a means of enhancing graft survival. This requires blood donation from the potential donor several days before the actual procedure, which may extend the time away from home and work. Troubled marriages may fail when the added stress of a kidney donation is introduced. According to one study, one third of the couples whose marriage failed cited the kidney donation as a major factor in the failure. Although much attention may be lavished on the donor in the perioperative period, it may be short-lived and tends to quickly refocus on the recipient. The recipient may, paradoxically, criticize the donor's decision or become distant or angry toward the donor. However, the increase in self-esteem gained from the altruistic action of donating a kidney may counterbalance such losses. Donation of a kidney has provided many donors with a sense of deep satisfaction. In view of the potential risks to donors, some centers refuse to perform transplantation from a living related donor. With effective immunosuppressive therapy, cadaveric transplantation is quite successful, and these centers argue that the benefit to the recipient is not greatly enhanced by transplantation from a living related donor. However, cadaveric organs are scarce. In contrast, proponents of transplantation from a living related donor argue that thwarting legitimate altruistic behavior by denying the procedure is paternalistic, particularly since enhanced graft survival is noted in such recipients compared with recipients of a cadaveric transplant. Conclusion Although the use of living related donors will remain controversial, everyone involved should be struck by the courage of those willing to donate a kidney to a relative. For physicians providing care to these families, an exceptional opportunity for guidance exists. ====================================================================== ====== X. Renal transplant specific sources and information ====================================================================== ====== (see also the National Transplant Patient Resources Directory, part 2 of the FAQ) contributed by Alex Bost, alex@unx.sas.com *** Periodicals (Magazines) Available to Renal Patients: RenaLife Semi-Annual Publication Publisher: American Association of Kidney Patients Cost: Free with Membership Contact: See AAKP in "Associations" Section For Patients Only Bimonthly Publication Publisher: Contemporary Dialysis, Inc. Cost: $17/year; $27/two years; Canada, $22/year; Foreign, $32/year Contact: For Patients Only 6300 Variel Ave. Suite I. Woodland Hills, CA 91367. *** Do I need a Hepatitis B Vaccine? Hepatitis B is a serious viral disease that attacks the liver. It is highly contagious and is potentially fatal. While there is no cure for the dangerous Hepatitis B, there is a vaccine available. Immunization is recommended for persons of all ages, especially those who are in a high-risk category: healthcare workers; abusers of injectable drugs, sexually active individuals (including heterosexuals with more than one partner in a six month period; homosexuals; bisexuals), patients on dialysis or those receiving frequent blood transfusions, and patients waiting for organ transplantation. If you fit into any of these categories, you should ask your physician about the Hepatitis Vaccine. *** Should I get a Flu Shot? Yearly immunization for the influenza virus is recommended for anyone who has a chronic condition. If you are a transplant recipient or on a donor list, ask your physician about the Flu Vaccine. Starting in 1993, Medicare will pay for the influenza vaccine. ====================================================================== ===== XI. Bone marrow transplant specific sources ====================================================================== ===== Become a marrow donor - (800)MARROW-2 --------------------- Information about how to be registered in the database for tissue type matching and bone marrow donation can be obtained from the National Bone Marrow Registry at (800) MARROW-2. They'll answer any questions and provide you with local centers for testing. To register, a small amount of blood is needed for typing. The operation to remove marrow is simple and only slightly discomforting. Within days, a donor regenerates the marrow. Bone marrow transplantation (BMT) is an effective treatment for some forms of leukemia and is being evaluated in treatments for other kinds of cancer. A donor is needed who matches the patient's tissue type in order to make the transplant work. Since the odds of any two people matching are small, a large number of possible donors is needed in order to find a match. Resources --------- BMT-TALK mail list discussion group: bmt-talk@ai.mit.edu is a moderated mailing list for the discussion of Bone Marrow Transplants. To subscribe to bmt-talk send mail to bmt-talk-request@ai.mit.edu with the only word "subscribe" (no quotes) in the body of the message. The BMT Newsletter is published bi-monthly by a former BMT patient for BMT patients. It is free, although they also accepts contributions. The address is: BMT Newsletter, 1985 Spruce Ave., Highland Park, IL 60035, phone 708-831-1913. The on-line version is available through the Oncolink gopher site (see above). BONE MARROW TRANSPLANT SUPPORT NETWORK (800-826-9376) A telephone support network for Bone Marrow Transplant patients & families. BMT information gopher sites: ----------------------------- Oncolink Information and on-line versions of the BMT Newsletter and the BMT Handbook can be found in Oncolink. WWW: http://cancer.med.upenn.edu/ gopher: cancer.med.upenn.edu BMT information can be found in the Radiation Oncology and Medical Oncology directories. A link to this BMT information has been made through the transplantation information directory in the Yale biomedical gopher site (section II). Cambridge University Bone Marrow Campaign ----------------------------------------- gopher.cam.ac.uk (port 70) under Cambridge University / University Society Information / Cambridge University Bone Marrow Campaign. Alternatively, use the URL: gopher://gopher.cam.ac.uk/11/CambUniv/univsoc/cubmc/ Contains the Bone Marrow Donation FAQ, information on the Cambridge University Donor Clinic, and other sources.