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Archive-name: medicine/transplant-faq/part2
See reader questions & answers on this topic! - Help others by sharing your knowledge Part 2 of bit.listserv.transplant FAQ Last updated 4/11/01 Added "Organ Transplants: Making the Most of Your Gift of Life" to Part 2, section II. Part 2: I. Things your doctor may not have told you - Bits of advice for transplant patients Everyday stuff Drinking water Ibuprofen Packing for the hospital II. Sources of information on organ and tissue donation, transplantation, and transplant centers Patient support groups, services, books and videos Religious organizations views on organ donation - National Donor Sabbath web site List of US lung transplant centers Living-Related Liver Transplant Programs in the US III. Non-US professional transplant organizations and patient support groups IV. Transplant fund raising V. Live kidney donor information VI. Renal transplant specific sources and information VII. Bone marrow transplant specific sources Bone marrow donation information ========================================================================== I. THINGS YOUR DOCTOR DIDN'T TELL YOU ========================================================================== (contributed by Alex Bost alex@unx.sas.com) Everyday Stuff: Buy a Medic-Alert (or some other brand) medical jewelry. Carry a card in your wallet that says you are a transplant recipient and list all your daily meds, as well as any drug allergies. (see Part 3, section IIe.) Stay out of the Sun/Use a Sunscreen! Many of the immunosupressive drugs will make you vulnerable to sunburn and increase your risk of skin cancer. Cover up, user a sunscreen of at least SPF30 and stay out of the sun. Buy Anti-bacterial Soap and put it everywhere: the kitchen, the bathrooms, the garage. Wash your hands often. That goes for family members, too. Buy a pack of Anti-bacterial wipes and keep them handy for when you are out of the house. Replace your household cleaning products (409, PineSol) with a brand (LySol) that disinfects as well as cleans. Eating Out: - Stay away from Salad Bars and Buffet Tables - Order well-cooked meats - Never, ever order an egg -- unless it is cooked solid - Never, EVER order raw seafood - Wash your hands before eating anything - If you suspect germs, ask your food preparer or server to wash their hands Pets: - Dogs, in general, are ok. Stay away from the feces. - Use caution with cats and litter boxes; cat feces can carry toxoplasmosis. - Birds carry many parasites and bacteria. Use caution (lung tx -- stay away!). - Hamsters, Gerbils, Rats, and Mice bites can affect your resistance to some immunosupressive drugs (like OKT3). Stay away from them. Travel Tips: - NEVER pack your meds - keep them with you at all times. It's a good idea to pack some extras. - Carry a copy of your medical history, doctors names, and prescriptions wth you. - When flying, take along a mask in case someone seated close to you has a cold. - Carry bottled water and keep yourself hydrated. -- Alexandra Bost UNIX SysAdmin, SAS Institute email: alex@unx.sas.com June `95 drinking water advisory -------------------------------- from Ken Lifton <KenL240787@AOL.COM>: Transplant Recipients International Organization 1735 I Street NW, Suite 917 Washington, DC 20006-2461 800-TRIO-386 DATE: June 16, 1995 TO: Chapter Presidents and Chapters In Formation FROM: Lisa R. Kory, Executive Director Subject: CDC Press Advisory - "Drinking Water Guidance for People with Weakened Immune Systems" Enclosed, please find a Centers for Disease Control (CDC) Press Advisory regarding the presence of Cyptosporidium (a parasite) in drinking water and its harmful potential for those with weakened immune systems (transplant recipients, HIV/AIDS infected and cancer patients). The CDC recommends consulting you doctor to assess individual vulnerability to the parasite. If you are at risk, the most effective method of neutralizing cryptosporidium is to bring your water to a rolling boil for at least one minute. Drinking bottled water that is distilled, has gone through a process of reverse osmosis, or comes from a deep well or protected spring, are good alternatives. For further information on bottled water call the International Bottled Water Association's Hotline at 800-WATER-11. Tap water taken from lakes or rivers is more likely to be contaminated. Please contact our office for further information about in-home, National Sanitation Foundation (NSF) approved, point of use (personal use, end of tap, under sink) water filtration systems, or call NSF directly at 800-NSF-8010. If you have further concerns about cryptosporidium in tap water you can call CDC's National AIDS Hotline (1-800-342-AIDS) or your local water utility. Drug interactions ----------------- Subject: Re: ibuprofen From: Jeff Punch <jpunch@umich.edu> Ibuprofen IS often a problem for patients on cyclosporine. The reason for this is because cyclosporine causes a constrictive effect on the small blood vessels in the kidneys. Normally the kidney responds by "autoregulation" which compensates for the cyclosporine effects. Ibuprofen can inhibit this autoregulation making the kidney more vulnerable to the toxic effects of cyclosporine. This can markedly reduce kidney function, and even result in kidney failure. Therefore, patients on cyclosporine need to be exceedingly careful about taking ibuprofen. Ibuprofen is available over the counter in many many different drugs including sinus medications and cold remedies. Furthermore, the entire class of drugs that ibuprofen belongs to can cause this problem. They are called NSAID for "non-steroidal anti-inflammatory drugs". Other members of this class include Naprosyn (recently approved for over the counter), indocin, clinoril, and many others. The effect that the combination of cyclo plus NSAID has on the kidney is variable: not everyone gets kidney failure. But, the fact that the two can combine to cause a real problem means that transplant patients on cyclosporine need to be extremely careful about any taking over the counter medications. Packing for hospital -------------------- (compiled by Luis Enrique Acero <lacero@impsat.net.co> from TRNSPLNT posts) - Before you pack A list of what to do at home to ready it for your absence. Make sure your beeper it's working - What to pack Slippers, socks, a robe (must have) Loose clothes Eye mask, ear plugs (being able to sleep any time) Personal care => toothbrush, hairbrush, ... Personal pillow (if any preferences) glasses, rigid case to put them Notebook, pens (take notes of medicines, remember questions) List of people who you want to notify addresses/phone numbers (stamps) Long distance calling card Portable radio/tape/cd player with headphones (extra batteries) Laptop, computer (internet access, games) Books, magazines, crosswords Camera (to remember people) Personal items to make you feel better => photographs, bible, .... Candy (for nurses) Money => quarters, cash ========================================================================== II. Sources of information on organ and tissue donation, transplantation, and transplant centers Patient support groups, services, and media List of US lung transplant center waiting times ========================================================================== National Donor Sabbath web site -------------------------------- This site contains a wealth of information regarding the positions of many Judeo-Christian religious organizations toward organ donation. Organizations' recent position statements, and suggestions to clergy for participating in National Donor Sabbath Day, or presented. From Douglas Y. Sur - doug.sur@bigfoot.com: National Sabbath Day is coming and has been constructed to help religous organizations help the transplant community. For those interested in National Donor Sabbath Day, please contact Jennifer Grant at 301-443-7577. I tried putting up some information regarding the subject at http://www.transplantawareness.org/sabbath/CONTENTS.html UNOS ---- (See also Part 1, section II for UNOS WWW page.) 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. ------------------------------------------------ Back issues of "UNOS Update", 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 Part 1, section II). 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@gwwpm1.unos.org. From Joel Newman <NewmanJD@gwwpm1.unos.org> (5/24/96) UNOS does have center-specific graft and patient survival rates and can provide up to 10 programs' stats free of charge. For better tracking and fulfillment, we ask that you send us a written request (can be faxed or e-mailed). Please specify the programs for whom you want data and give us a snail-mail address (there is a user's guide that accompanies the data, and it's almost always too much to fax). The best number to call for more info is the Communications Department at 804-330-8561. You can also fax requests to us at 804-330-8507, or e-mail me and I'll pass it on. Please try to allow a week or so for us to process and mail the info -- we're getting a lot of requests lately. Coalition on Donation --------------------- 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. For brochures and education material call: 1 -800-355-SHARE Coalition on Donation 1100 Boulders Parkway, Suite 500 P.O. Box 13770 Richmond, VA 23225-8770 FAX: 804-330-8593 The Partnership for Organ Donation, Inc. ---------------------------------------- http://www.med.umich.edu:80/trans/transweb/partnership (see Part 1, section II) 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 2 Oliver St. International Place Boston, Massachuetts 02109 telephone:(617)482-5746. info@organ-donation.org The Wendy Marx Foundation for Organ Donor Awareness --------------------------------------------------- Dedicated to educating people about organ donor awareness. It was formed in 1990 after Wendy Marx received a liver transplant. The Foundation has helped sponsor the U S Transplant Games; formed the U S Sports Council on Organ Donation, which includes athletes, coaches, team managers and sports media representatives; launched Dribblin' for Donors on the collegiate basketball level; and has spread the word in many presentations throughout the country to schools, corporations and the press. "Talk, Talk, Talk," is a video aimed at reaching junior high school students and their families on the issue of organ donation. The eight-minute video features Olympic champion Carl Lewis and liver transplant recipient Wendy Marx. The video will have the most impact if a transplant recipient or donor family member is able to accompany it in a classroom. Wendy Marx can be reached at WEMarx@aol.com The Foundation can be reached at 202/546-7270 or 322 S. Carolina Street, SE; Washington DC 20003 Support groups (see Part 3 for organizations offering financial assistance) --------------------------------------------------------------------------- A.C.O.R.N. (Atlantic Canada Organ Recipient Network) ---------------------------------------------------- from Oran Mosher <oran@ra.isisnet.com> The group currently consists of people who are from across Atlantic Canada. A.C.O.R.N. holds meetings every other month and produces a Newsletter three times a year. The Newsletter is called ACORN News. The Newsletter is used as a communication tool to keep it's members informed on various topics. The group promotes organ donor awareness, peer volunteer support, organizes social events and holds fundraisers to help with financial costs. For more information about A.C.O.R.N. or to receive a personal copy of ACORN News send your queries to any of the below addresses. Mailing Address: A.C.O.R.N. c/o V.G. Hospital 1278 Tower Rd. Halifax, NS B3H 2Y9 Canada Voice Mail / Fax Machine: (902) 469-9769 - Voice (902) 428-2042 - Fax Biliary Atresia & Liver Transplant Network ------------------------------------------ Biliary Atresia & Liver Transplant Network Inc. 3835 Richmond Avenue, Box 190 Staten Island, NY 10312 USA Telephone (718) 987-6200 Fax: (718) 987-6200 E-Mail: Livers4Kids@earthlink.net OR OrganTrans@msn.com Web Site: http://www.asf.org/balt.html Biliary Atresia & Liver Transplant Network Dedicated to empowering the hearts and minds of children with liver disease, their families and the medical professionals, BALT is the largest pediatric liver foundation worldwide and publishers of The Biliary Tree newsletter. BALT provides FREE educational information, support, and advocacy for all pediatric liver diseases (PRE- AND POST-LIVER TRANSPLANT) including Alagille's Syndrome, Alpha-1 Antitrypsin, Biliary Atresia, Byler's Syndrome, Galactosemina, Gylcogen Storage Disease, Hepatitis, Tyrosinemia, Wilson's Disease and pediatric liver transplantation. WHAT BALT DOES Baby Formula & Medical Supplies Network - This program has helped many families throughout the U.S. to provide adequate nutrition for their children with liver disease. Parent Matching - This program brings parents in the network together, which often results in establishing strong support systems and special friendships. Support Team - The eight member team welcomes new families and provides emotional support as these families start their journeys. The Tree House Club - The Club allows children with liver disease, liver transplant recipients and their siblings to share their feelings and cope with their fears by linking up with each other through a pen-pal network. The Children's Corner - The Corner gives our kids a special page in each issue of The Biliary Tree where they can get creative. It's a chance for the kids to share what's new and to tell their own stories. BALT Library - The library holds information for all members on all areas of pediatric liver disease, pediatric liver transplantation and organ donation. And because the library is connected with a number of other organizations worldwide, additional resources will continually become available to members. The Twin Registry - In hopes of getting to the core of why certain diseases occur in our infants, the registry continues to register twins and triplets with liver disease. Educational Seminars - In conjunction with other organizations, BALT conducts educational seminars with the assistance of leading medical professionals . On-Line Family Support Chats - Families with computer access can join BALT, medical professionals and other families to discuss all aspects of pediatric liver disease and transplantation. Schedules will be posted on our Web site. Transplant Center Referrals - BALT acts as liaisons between families and pediatric liver transplant centers. We provide information about specific transplant centers, resources available in the area and support from other BALT families located near the transplant center. Medical Advisory Board - To ensure the highest quality of medical information to our members, BALT has enlisted the assistance of the top medical professionals in pediatric liver disease and transplantation. Angels Above Us - Until a cure is found for liver disease and transplantation has been perfected, Angels Above Us will continue to serve as the organization's bereavement support group. This group lends support to those who are suffering by linking them with others in the network who have also lost children. Coalition on Transplantation - BALT serves as Co-Directors and Founding Trustees of the American Share Coalition on Transplantation (ASCOT). BALT, along with the American Share Foundation, The Nicholas Green Foundation and The World Children's Transplant Fund have together formed a coalition of groups dedicated to disseminating educational information about transplantation and promoting organ donation. ASCOT's web site (http://www.asf.org) is the Official Web Site for The 1997 International Transplant Congresses. Children's Liver Association for Support Services (C.L.A.S.S.) -------------------------------------------------------------- 26444 Emerald Dove Drive Valencia, CA 91355 toll-free: 1-877-679-8256 (661) 255-0353 e-mail: SupportSrv@aol.com http://www.classkids.org C.L.A.S.S. is dedicated to addressing the emotional, educational and financial needs of families with children afflicted with all types of liver disease including: biliary atresia, Alagille's syndrome, alpha-1-antitrypsin, tyrosinemia, Wilson's disease, and others. We have produced a 30 page Resource Directory with an up-to-date listing of organizations, places to turn for help with expenses related to your child's medical care, places that help with free or low cost airfares, etc. Just send us an e-mail if you would like to receive one. C.L.A.S.S. is an all-volunteer group comprised of parents, family members, healthcare professionals and others interested in pediatric liver disease and liver transplantation. The programs and services of C.L.A.S.S. include: telephone hotline, parent matching, financial assistance, educational literature, and much more. Our free quarterly newsletter, "C.L.A.S.S. Notes" describes past and upcoming activities of the organization, highlights additional available resources, and features articles written by leading liver specialists about various aspects of pediatric liver disease and liver transplantation. C.L.A.S.S. is a qualified tax-exempt nonprofit organization under the Internal Revenue Code as described in section 501(c)(3). 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. Donor Network of Arizona ------------------------ From Dale Ester <dalee@ENET.NET>: DNA is an OPO and has a logo - "the vital link for organ, tissue, and eye recovery. SHARE YOUR LIFE ...SHARE YOUR DECISION." DNA is located at 3877 N 7th St # 200 Phoenix, AZ 85014 (602) 222-2202 1-800 94-DONOR . Jack Cremin is the Director. DNA has produced a donor awareness educational video which is currently showing on public TV. DNA has a Speaker's Bureau of organ recipients and donors (approximately 25 individuals) who personally spread the word (educate) others about the benefits of organ donation. I am on this Bureau (for the past 3 1/2 years). The same telephone number/address also gets in touch with Robert Miller (Director) of the ARIZONA COALITION FOR ORGAN DONATION. 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 SECOND CHANCE TRANSPLANT SUPPORT GROUP -------------------------------------- 1609 WINTERGREEN COURT HUNTSVILLE,ALABAMA 35806 Second Chance, transplant support group is a support group for pre and post transplant recipients and their families. the purpose is to increase public awareness concerning the critical shortage of donated organs. to help educate the public concerning fears and misconceptions of being an organ donator. to emotionally support transplAnt recipients,and their fanilies through each hurdle and milestone after transplant surgery,to share ideas,concerns,and educational materialrelated to improving the quality and appreciation of life as an organ receipient,to help each other keep abreast of future developments and research in transplantations. Special News ------------ Ron Sewill <esanchez@csbsju.edu> I started, along with some other parents who have been there, done that, an informational and advocacy group for special needs kids of all kinds. We also put out a free monthly snail mail newsletter targeted to our area but applicable to most places describing what is available to make the non-medical part a little easier: Special News PO Box 23 Sauk Rapids, MN 56379 1-800-471-0026 or e-mail me at: <esanchez@csbsju.edu> with name, address, and I will add you to the confidential mailing list. Oh yes, we want to know if you are a family or a professional caregiver. TRIO ---- http://www.med.umich.edu/trans/transweb/support/trio_main.html 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: (800) TRIO-386, (202) 293-0980, fax (202) 293-0973. They also have pamphlets and organ donor cards available. Other ----- 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, Magazines, and Videos ---------------------------- (see also Wendy Marx Foundation above) 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 four issue subscription for $12.95 annually write to: Chronimed Publishing, P.O. 46181, Minneapolis, MN, 55446-9920 From Bob Finn (finn@nasw.org ) ""Organ Transplants: Making the Most of Your Gift of Life," (O'Reilly & Associates, 2000) " http://nasw.org/finn/organ.html In Organ Transplants I tell the organ recipient, the potential organ recipient, and his or her family what to expect from this life-changing event. Transplant professionals like to say that a transplant does not restore a person to perfect health. On the contrary, the recipient is merely changing one serious medical condition for another. Transplant recipients need to cope with the lifetime responsibility of taking anti-rejection medications, many of which have significant side effects. They have to dodge the twin perils of infection and rejection. They have to deal with the emotional and financial consequences of transplant. Told from the medical consumer's point of view, Organ Transplants will help the recipient cope with this often overwhelming situation. "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 (from Marion Leska <MarionL@aol.com>) "LIFE from DEATH, The Organ and Tissue Donation and Transplantation Source Book with Forms" The P. Gaines Co. P.O. Box 2253, Oak Park, Illinois, 60303 The book has several sections. It has a detailed explanation of the Nat'l Organ Transplant Act, and then has sections on 1.Donation of organs,tissues,etc; Law and legislation, U.S. and States. 2. Transplant of Organs,tissues,etc. Law and legislation, US and States., and 3. Dead bodies (honest!!!) Law and legislation, US and states. "Taking Heart" by A.C. Greene. 1990, Simon & Schuster. A first person account by a heart transplantee. From Fritz Dolak <00fjdolak@bsuvc.bsu.edu>: Video: "Dying to Breathe" It can be obtained for $19.95 from Nova: 1-800-628-5355. Though it contains a 1993 copyright, I believe it was filmed c. 1989. I may be wrong in this. My transplant center made all lung transplant candidates view it. Transplant Video Journal ------------------------ A half-hour video newsmagazine covering transplantation topics nationwide is available FREE of charge by sending your name, address, etc. to transvidjr@aol.com. Or you may fax request to (201) 515-3434. Transplant Video Journal is produced by TransCom Media through an educational grant from Sandoz Pharmaceuticals Corporation, East Hanover, NJ. List of waiting times at some US lung transplant centers -------------------------------------------------------- Waiting time estimates were given by a center employee on April 1995. These are unofficial numbers, and may have changed. Waiting time should not be the sole criteria for choosing a transplant center. A complete list of lung transplant centers is available from UNOS: (from Joel Newman <NewmanJD@gwwpm1.unos.org>) Please specify the programs for whom you want data and give us a snail-mail address (there is a user's guide that accompanies the data, and it's almost always too much to fax). The best number to call for more info is the Communications Department at 804-330-8561. You can also fax requests to us at 804-330-8507, or e-mail me and I'll pass it on. Please try to allow a week or so for us to process and mail the info -- we're getting a lot of requests lately. Baylor College of Medicine Houston, TX (713)790-2076713)70 average wait 6 - 9 months Barnes Hospital St. Louis, MO 1-800-321-4054 average wait 12 - 18 months The Hospital of the University of Pennsylvannia Philadelphia, PA (215)662-2365 average wait 11 - 12 months USCD Medical Center San Diego, CA (619)543-7777 average wait for single lung 7 months average wait for double lung 12- 18 months Shands Hospital Gainsville, FLA 800-749-7424 average wait 6 - 8 months University of Washington Medical Seattle, WA (206)543-3090 average wait 12 months University Hospital Denver, CO (303)270-7891 average wait max. 12 months Presbyterian University Hospital Pittsburgh, PA (412)648-9136 average wait two years Columbia Presbyterian Medical Center New York, NY (212)305-7600 average wait two - three years UNC Hospitals Chapel Hill, NC (919)966-6038 average wait for single 12 - 15 months average wait for double 18 - 24 months Baylor University Dallas, TX (214)820-6856 average wait 6 - 12 months Cedars-Sinai Medical Center Los Angeles, CA (310)855-2354 average wait 18 months Mayo Clinic Rochester, MN 800-422-mayo average wait 2 -3 years University of Michigan Medical Center Ann Arbor, MI (313)936-8535 average wait 12 - 18 months Medical Center Hospital San Antonio, TX (210)567-5777 average wait nine months University of Minnesota Hospital Minneapolis, MN 1-800-688-5252 average wait one year Loyola University Maywood, IL (708)216-1169 average wait 7 months University of Illinois (312)413-1900 Chicago, IL average wait 4-5 months Living-Related Liver Transplant Programs in the US -------------------------------------------------- from Lisa Carroccio, Chairwoman & CEO Biliary Atresia & Liver Transplant Network Livers4Kids@earthlink.net Complete list also available at http://www.asf.org/livingrelated.html Baptist Medical Center of Oklahoma Boston's Children's Hospital Cardinal Glennon's Children's Hospital Children's Hospital Medical Center, Cincinnati, OH Children's Hospital of Philadelphia (CHOP) Dallas Liver Transplant Program Denver Children's Hospital Fairview-University Medical Center Hermann Hospital John Hopkins Medical Center Massachusetts General Hospital Medical College of Virginia Hospital Mount Sinai Medical Center St. Christopher's Hospital for Children Stanford University/Lucille Salter Packard Children's Hosp. Texas Children's Hospital University of California at San Francisco (UCSF) University of California at Los Angeles (UCLA) University of Chicago/Wyler's University of Miami/Jackson Memorial University of Nebraska University of Pittsburgh Children's Hospital Washington University School of Medicine-St. Louis Children's Hospital Westchester County Medical Center Wilford Hall Medical Center ============================================================================ III. Non-US 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. Information from Wanda Bond, Gerald Huber, and Julio Real 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 * As of October 10, 1995 Eurotransplant will be moving to: Plesmanlaan 100 PO box 2304 2301 CH Leiden the Netherlands Attn: Bernard Cohen, Director Phone: 011-31-71-(5*) 795 795 Fax: 011-31-71-(5*) 790 057 UK Transplant Center 011-44-272-507-777 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 Delgado, 8 3142488 28029 Madrid 3142568 Spain 3142634 FAX: +34 3 314 29 69 Attn: Dr. Rafael Matesanz, National Transplant Coordinator 3142669 OCATT - Organitzacio Catalana de Transplantaments Mejia Lequerica, 1 08028 Barcelona, Spain voice Ph. +34 3 490 62 50 FAX +34 3 491 37 11 Head Coordinator: Dra. M. Antonia Viedma 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 Hopitat Cantonal Universitaire , 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 transplant support groups: --------------------------------------------- The list below was compiled by Gerald Huber <Gerald.Huber@geographie.uni-regensburg.de>, Julio Real <IQIREAL@CC.UAB.ES>, and Bernardo Brotas Carvalho <bernardo@cfn.ist.utl.pt>. Austria: Gesellschaft Nierentransplantierter und Dialysepatienten Oesterreichs z. Hd. Hfrat Dr. Herbert Schmidt Neulerchenfelderstr. 10/I/3/17 A-1160 Wien, Austria Phone: (0043) 4083818 Europe: CEAPIR c/o Patricia Doherty Pembroke Road 156 Ballsbridge Dublin 4, Ireland Phone: 00353-1-689788/9 Fax: 00353-1-683820 Germany: DIATRA Verlag GmbH German Association of Dialysis Physicians Postfach 12 30 Deutsche Dialysegesellschaft D-65332 Eltville/Rhein niedergelassener Aerzte e.V. Germany Bundesallee 243 Phone: (06123) 73478 D-42103 Wuppertal Fax: (06123) 73287 Phone: 0202/445655 Federal Association of Transplant Recipients German Heart Foundation Bundesverband der Organtransplantierten Deutsche Herzstiftung e.V. Paul-Rcker-Str. 20 - 22 Wolffsgangstr. 20 D-47059 Duisburg D-60322 Frankfurt am Main Tel. (02 03) 44 20 10 Phone: 069/9567980 Fax (02 03) 44 21 27 http://members.aol.com/bdomuc/index.htm German Foundation for Organ Transplantation Heartchild Association Deutsche Stiftung Organtransplantation Herzkind e.V. Emil von Behring-Passage Husarenstr. 70 D-63263 Neu-Isenburg D-38102 Braunschweig Phone: 06102/359210 Phone: 0531/797121 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 JTR Japan Transplant recipients organization Address: Osaka-City Kita-ku Minamimori-mati 2-3-20-502, Japan Address Number 530 TEL 06-362-0411 FAX 06-362-2068 Office Manager Mr. Okubo Mitikata 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 Portugal: (from Bernardo Brotas Carvalho <bernardo@cfn.ist.utl.pt>) APIR Associacao Portuguesa de Insuficientes Renais c/o Ma Alcina Ascencao Address: Via Princ. de Peoes, Zona 1, Lote 105, Chelas 1900 LISBOA PORTUGAL Phone: +351 1 8575753 Fax: +351 1 8370826 Spain: (From Julio Real <IQIREAL@CC.UAB.ES>) ADER ('Asociacion de Enfermos Renales': kidney patients association) --------------------------------------------------------------------- ADER is the Catalan association of kidney patients. Full members are all affected of ESRD (dialysis or transplanted). Others may be associate members, according to our bylaws. We are a non-profit organization, founded in 1976, and with a membership of ca. 1600 today. Our main goals are to assist patients with chronic renal failure in all aspects concerning their quality of life, providing factual, psychological and nutritional advice, and services. And to inform the Catalan society of the need and importance of organ donation. The general services the association offers include: - Travel advice and arrangements for patients in dialysis, worldwide, for work or vacation. - Physical rehabilitation (massages, yoga... ). - Nutritional information: cooking classes for kidney patients and family members. We are now publishing a cookbook for ESRD diet (in Catalan, a Spanish version will be forthcoming). - We have periodic lectures (by urologists, nephrologists, and others...), on the latest advances in treatment an therapy, and other topics of interest, such as tax deductions for the handicapped. - We organize a Symposium on 'Dialysis, Transplant and Organ Procurement'. This year it will be held in Barcelona, on the fall. Nephrologists, urologists, organ procurement coordinators (so far only from Spain) give lectures followed by brief discussions. -We publish a book of 'Proceedings', with the (more or less) summarized lectures (Spanish). These Proceedings are available at a cost of $15.- plus postage. I will send a short list of titles-contents. - We publish a newsletter four times a year (in Spanish), including topics of general and local interest. Subscriptions are available at a cost of $25.- + postage per yr. - Recreational activities: excursions, art shows, sports competitions, a children festival, with clowns, etc. - We have an arrangement with a pager service providing company, so that the members in the waiting list can carry one at a discount. - We organize periodic Donor Awareness campaigns, including the distribution of Organ Donor Cards, information leaflet distribution, etc. 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. ============================================================================ IV. Transplant fundraising ============================================================================ (see also the National Transplant Patient Resources Directory, part 3 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. ============================================================================ V. 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 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. ============================================================================ VI. Renal transplant specific sources and information ============================================================================ (see also the National Transplant Patient Resources Directory, part 3 of the FAQ) NATIONAL AMERICAN ASSOCIATION OF KIDNEY PATIENTS (AAKP) ------------------------------------------------------- 100 S Ashley Dr # 280 Tampa FL 33602 (800) 749-2257 Here are the chapters in the U.S.: (Names listed are 1995 chapter President) NORTHERN REGION * Meadowsland Chapter * Northern NJ Chapter Howard Hurwitz Stan Gottlieb PO Box 3032 528 Dinah Rd Clifton NJ 07012-3032 Landing NJ 07850 (201) 471-5674 (Day) ((201) 398-2391 * Garrett Mountain Chapter * Long Island Chapter Juana Santana Margie Ng Gencarelli 115 Genessee Ave 2 Maplewood Ave Patterson NJ 07850 Farmingdale NY 11735 (201) 278-7860 (516) 756-9126 * New York Chapter John Igoe 1541 Williams Bridge Rd, 5J Bronx NY 10461 (718) 597-9750 WESTERN REGION * Central Arizona Chapter * Colorado Chapter Dale A. Ester Lew Gaiter 4401 W Hatcher Rd PO Box 8442 Glendale AZ 85302-3821 Denver CO 80201 (602) 939-7248 (303) 758-8610 * Harbor-South Bay Chapter * Sacramento Valley Chapter Mary Heisick Patricia Jones PO Box 8 565 Morrison Ave Seal Beach CA 90740 Sacramento CA 95838 (310) 430-0786 (916) 924-1996 * Redding California Chapter * Los Angeles Chapter Jamie Hale Judy Weintraub 18388 Utility Ave PO Box 76E87 Anderson CA 96007 Los Angeles CA 90067 (916) 246-7881 (310) 277-1763 SOUTHEASTERN REGION * Palm Beach Chapter * South Florida Chapter Ben Altman Rick Kral 7748 A Lexington Club Blvd 11501 NW 18th Court Delray Beach FL 33446 Plantation FL 33323 (407) 499-2910 (305) 472-7935 MIDWEST REGION * Alabama Chapter * Atlanta Georgia Chapter John Streeter Pamela Printup 1408 29th St, North 6409 Lakeview Dr Birmingham AL 35234 Buford GA 30518 (205) 252-9556 (404) 932-1100 * Chicagoland Chapter * Miami Valley Ohio Chapter Gloria Combs Bob Felter 70 Lincoln Oaks Dr #707 4511 W State Route #571 Chicago IL 60514 West Milton OH 45383 (708) 325-3475 (513) 698-5847 * Rome Georgia Chapter Hazel McDowell 118 Woodcrest Dr Rome GA 30161 (706) 232-8989 SOUTHERN REGION * Bayou Area Chapter * New Orleans Chapter Louisiana Barrios Nick Blady PO Box 400 3912 Delhi St Lockport LA 70374 Metairie LA 70001 (504) 532-3542 (No phone listed) * North Louisiana Chapter * Lone Star Chapter Mike Salvail Charles Sawyer 2620 Centenary Blvd, Suite 110 7311 Lunar Dr Shreveport LA 71104 Austin TX 78745 (318) 222-0400 (512) 448-3676 The Diabetes Transplant Exchange -------------------------------- is an educational and social forum for people who have chosen to cure diabetes through transplantation and for those interested in the advances in immunology and transplantation to cure diabetes. For those living in reach of New York City, events are held every three months (by invitation so we know how many guests to expect). Currently there are 150 members in the New York region (NY,NJ, PA, CT, MA). Regional affiliates are being established. The Diabetes Transplant Exchange was founded in December 1994 by Deb Butterfield (kidney and pancreas recipient 4/93 and 8/94). For information contact Deb Butterfield at <diabtx@aol.com> or by snail mail at 345 East 69th St, 11G, New York, NY 10021 NATIONAL KIDNEY FOUNDATION -------------------------- 30 E. 33rd Street, 11th Floor New York, New York 10016 800-622-9010 NKF's new Family Focus Program features two newsletters "The Parent Connection" and "Straight Talk", for parents, and for children and young adults respectively. If you would like to receive a free subscription at home, please write to "PCST" c/o the address above or call using the above phone number. Information below 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 above 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. =========================================================================== VII. 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 (see WWW page info below). 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 below). BONE MARROW TRANSPLANT SUPPORT NETWORK (800-826-9376) A telephone support network for Bone Marrow Transplant patients & families. BMT information web and gopher sites: ------------------------------------- The Anthony Nolan Bone Marrow Trust ----------------------------------- http://wombat.doc.ic.ac.uk/bone-marrow/index.html The Anthony Nolan Bone Marrow Trust, a leading centre for research and also runs the UK register of potential donors. The more people there are on the register, the better the chance of finding a compatible donor. This site references other BMT international BMT sites. The National Marrow Donor Program Information Web Site ------------------------------------------------------ http://WWW.Marrow.Org/ The NMDP maintains a computerized Registry of volunteer marrow donors, willing to become donors if ever matched with a patient in need of a transplant. Read further to find out how you can become a volunteer donor or obtain help through the NMDP. Contents: Donor Story Recipient Story Questions & Answers How Do I Become A Donor? Contacting the National Marrow Donor Program Current News Links of Interest Oncolink -------- Information and on-line versions of the BMT Newsletter and the BMT Handbook can be found in Oncolink. http://oncolink.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 (Part 1, section II). Bone marrow registries outside the US ------------------------------------- The Australian Bone Marrow Donor Registry Bone Marrow Transplant Unit 153 Clarence Street Sydney, NSW 2000 Australia Telephone: +61 2 229 4369 Linda Albinet CNCC 401-555 West Eighth Avenue Vancouver Canada V5Z 1C6 Telephone: +1 604 879 7551 Fax: +1 604 879 4255 Deutsche Knochenmarkspenderdatei Kreuzstr. 52 D-72074 Tuebingen Germany Telephone: +49 (7071) 84400 Fax: +49 (7071) 27116 The Norwegian Bone Marrow Donor Registry Institute of Transplantation Immunology National Hospital N-0027 Oslo 1 Norway Telephone: +47 22 86 70 10 Bone Marrow Donor Programme W.H.O. Immunology Center National University of Singapore Singapore 0511 Telephone: +65 772 3318 Fax: +65 777 5720 E-mail: micrenec@nus.sg Bone Marrow Registry Department of Clinical Immunology F79, Huddinge Hospital S-141 86 Huddinge Sweden Telephone: +46 (8) 746 8020 The Anthony Nolan Bone Marrow Trust The Royal Free Hospital London NW3 2QG United Kingdom Telephone: 0171 284 1234 _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com User Contributions:Comment about this article, ask questions, or add new information about this topic: |
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