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Path: senator-bedfellow.mit.edu!faqserv From: mike.holloway@stjude.org (Michael Holloway) Newsgroups: bit.listserv.transplant,sci.med,sci.bio.misc,sci.answers,news.answers Subject: FAQ: bit.listserv.transplant, Organ transplantation newsgroup (Part 1 of 4) Supersedes: <medicine/transplant-faq/part1_873798426@rtfm.mit.edu> Followup-To: bit.listserv.transplant Date: 10 Oct 1997 09:24:30 GMT Organization: none Lines: 1275 Approved: news-answers-request@MIT.Edu Expires: 23 Nov 1997 09:20:38 GMT Message-ID: <medicine/transplant-faq/part1_876475238@rtfm.mit.edu> Reply-To: mike.holloway@stjude.org (Michael Holloway) NNTP-Posting-Host: penguin-lust.mit.edu Summary: This is a description of the bit.listserv.transplant newsgroup and its parent mail list, TRNSPLNT. Frequently asked questions regarding organ transplantation are addressed. A list of resources for transplantation patients is provided. Pointers to other Internet transplantation resources are provided. X-Last-Updated: 1997/10/08 Originator: faqserv@penguin-lust.MIT.EDU Xref: senator-bedfellow.mit.edu bit.listserv.transplant:25076 sci.med:221639 sci.bio.misc:10061 sci.answers:7212 news.answers:114251 Archive-name: medicine/transplant-faq/part1 Part 1 of bit.listserv.transplant FAQ Last updated 10/3/97 Modifications since 8/3/97 Updated Novartis Pharma (formerly Sandoz) Transplant Square Part1, section II Added Biliary Atresia & Liver Transplant Network weekly chat to Part 1, I. Updated contact info for American Organ Transplant Association Part 3, section I. Updated NORD cyclosporin/Sandoz drug assistance program, Part 3, section I. Contents Part 1: I. Discussion forums TRNSPLNT mail list - How to subscribe DIALYSIS mail list - How to subscribe Transplant patient IRC channel, and other chat sessions Spouse/Caregiver mailbox Australian Transplant and Dialysis discussion list Second Wind discussion list L-TX-S Caregivers discussion list II. Organ and tissue transplant info via gopher and WWW III. Organ donation and transplantation, frequently asked questions IV. The organ donor shortage V. Transplant and organ donation myths VI. Organ donor awareness postage stamp campaign and other awareness materials 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 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 Part 3: I. National Transplant Patient Resources Directory II. Other Resources a. Other companies offering pharmaceutical delivery services b. Financial and travel assistance c. Medicare drug cost coverage d. Additional government programs of interest e. Patient specific education, support, and products Part 4: From TransWeb I. Organ and Tissue Donation: A Gift of Life What do I do if I want to donate? Top 10 Misconceptions About Organ Donation II. Ask TransWeb Questions and Answers III. Frequently Asked Questions IV. Organizations Promoting Donation About this FAQ -------------- This FAQ is archived at rtfm.mit.edu and available by anonymous ftp under pub/usenet-by-group/bit.listserv.transplant. Its available by gopher from any site with a link to the MIT ftp archive, such as ccsun42.csie.nctu.edu.tw where faqs are listed under newsgroup hierarchy. URL: http://www.lib.ox.ac.uk/internet/news/faq/bit.listserv.transplant.html or ftp://rtfm.mit.edu/pub/usenet/bit.listserv.transplant/ TransWeb (see section II) has a link to the FAQ through yet another archive mirror. A gopher veronica search using "medicine/transplant-faq" will also get you the current version. The subjects treated in this FAQ are, for the most part, specific for the state of organ and tissue transplantation in the United States. If anyone would be interested in providing information that might be helpful to people of other countries please let me know. If anyone has other information they would like to have included in this FAQ please send it along. Many thanks to the people who have contributed information and otherwise helped with the FAQ: Alex Bost, Dan Flasar, Kimberly Montgomery, Arthur Flatau, Katherine Eberle, Anne Treffeisen, Rosalie Katchen, Joel Newman, Gerald Huber, Ken Lifton, Dale Ester, Jim Warren, Jeff Punch, Fritz Dolak, Julio Real, John Abbott, Marion Leska, Karen Couture, Lou Bushfield, Lisa Carroccio, Kandy Darroch, and Luis Enrique Acero. Mike Holloway mike.holloway@stjude.org ========================================================================= I. Description of the TRNSPLNT mail list and bit.listserv.transplant ========================================================================= The Usenet newsgroup bit.listserv.transplant is a bi-directional echo of the listserv mail list TRNSPLNT. If you have an interest in transplantation, and think that the posted news and discussions are of interest, it may be more convenient for you to subscribe. Be sure to save the instruction file that is sent to you automatically when you subscribe. To have a list of listserv commands sent to you, send mail to LISTSERV@WUVMD.WUSTL.EDU and place either HELP or INFO REFCARD on the first line of text. This list includes commands for unsubscribing, setting your subscription to "nomail", and other useful commands. To remove yourself from the list, send SIGNOFF TRNSPLNT. All posts to TRNSPLNT or bit.listserv.transplant are archived by the listserv system at Washington U. You can get an index of the archive by following the directions below in Dan's introduction. You can search the archive as a database and retrieve individual articles via a keyword search by following the directions in the file obtained by sending INFO DATABASE to LISTSERV@WUVMD.WUSTL.EDU Below is the introduction to TRNSPLNT written by Dan Flasar. Since Dan started the group early in `93 the posts have been on everything from copies of news and information to recipes for low salt diets. It has been a useful electronic support group for some participants who are either waiting for a transplant, recovering from a transplant, or just getting on with life after a transplant. We encourage recipients, caregivers and medical professionals to introduce themselves to the group. The list is also a tool for organ and tissue donor education. ------------------------------------------------------------------------- TRNSPLNT on LISTSERV@WUVMD.WUSTL.EDU TRNSPLNT is a discussion list for organ transplant recipients and anyone else intested in the issues, experiences and realities of living with an organ trasplant. Over the last 30 years, the number of transplants performed each year has grown steadily in both absolute numbers and type of organs transplanted. Though there are hospital, clinical and pharmaceutical industry-sponsored newsletters, there are few, if any, completely independent discussion forums for those who have experienced this oftentimes dramaticaly effective therapy. There are many life issues for the transplant patient that are simply not covered in medical literature or by medical personnel. TRNSPLNT will provide a way for members to share information on such things as as travel, both domestic and abroad, how to deal with a compromised immune system, stories about transplant experiences, and anything that the members feel is worth discussing. Archives of TRNSPLNT postings can be listed by sending an INDEX TRNSPLNT command to LISTSERV@WUVMD.WUSTL.EDU. To subscribe, send the following command to LISTSERV@WUVMD.WUSTL.EDU via email: SUB TRNSPLNT Your Full Name where "Your Full Name" is your name. For example: SUB TRNSPLNT Billy Rubin Owner: Dan Flasar SYSFLASAR@WUGCRC.WUSTL.EDU A web page form is also available for subscribing at http://www.cris.com/~holloway NOTE: This is NOT a medical forum! Though advice may be offered, you should, as with any medical issue, check with your physician before you accept anything said in this forum as a basis for doing anything that might affect your physical condition! DIALYSIS -------- (from Dale Ester dalee@enet.net) The mailing list DIALYSIS has now been set up (as of 6/95). The email address of the list is: dialysis@mail.wustl.edu To subscribe to the list: To do this, send mail to listproc@mail.wustl.edu with the message body of: subscribe DIALYSIS <your full name> e.g. subscribe DIALYSIS dale ester Only subscribed users can post to the list. Any questions, please contact aakpaz@enet.net Internet Relay Chat (IRC), and service specific chats ----------------------------------------------------- from Kandysfl@aol.com: IRC chats are available for anyone with internet access. The s/w is free and novijo@chesco.com (Joe Novitsky) and geeo@ix.netcom.com (George W. Kern) are available for anyone needing help. The new web address http://www.geocities.com/HotSprings/9275/organtx.html IRC Chat channel is "#organtx" on mirc.another.net" port "6667,7000" and is open at 3:00 PM EST on Thursdays Eurochat, and at 9:00 PM EST on Thursdays for USA chat. Prodigy Transplants/Pre Post chat is on Thursday, Friday, and Saturday nights at 9 PM ET. They chose a topic for each night, but all are welcome and all questions or needs are discussed. Weekly Chats on America Online Mon 9 PM ET, Liver Dis & Tx, Mutual Support Room Tue 10 PM ET, Private Room, Lung Transplant Thu 7 PM ET, Heart Tx, Health Conf Room Fri 9 PM ET, All Organs/Tissues Tx's IMH Conf Hall From Lisa Carroccio <livers4kids@earthlink.net>: The CHILDREN'S LIVER ALLIANCE (Biliary Atresia & Liver Transplant Network) hosts our weekly on-line educational/support meetings for all interested in pediatric liver disease and transplant. PLACE: http://www.asf.org/txtalk.html NO SOFTWARE TO DOWNLOAD!!! TIME: Thursdays, 10 P.M. Eastern Standard Time NOTE TO ALL AMERICA ON-LINE USERS: YOU WILL NEED THE LATEST VERSION OF AOL W/BROWSER TO PARTICIPATE. To join the chat (after choosing a user name), just hit the "connect" button. Let the page load completely. Be patient. If you have any problems, please e-mail me at Livers4Kids@earthlink.net or call 718-987-6200. Spouse/Caregiver mailbox ------------------------ Note that this is not run on automatic list software so commands and procedures used with the TRNSPLNT and Dialysis lists will not work. From: Diane Lamb <spouse@crosslink.net> I have created an additional mailbox here to begin to address the creation of a Spouse/Caregiver mailbox. Until someone can get some space out on the other public areas, I would be willing to forward all messges to those who want it. Please feel free to have folks mail to the address <spouse@crosslink.net>. If they want to be added to the mailing list have them put subscribe Well Spouse in the subject line of the message. I will forward messages at least 2x a day, and will attempt to keep an archieve of all messages received. This forum is not intended to prevent the person with the chronic illness from participating, but to give the caregivers a place to vent, and talk freely among themselves if they need to. Australian Transplant and Dialysis discussion list -------------------------------------------------- RALPH NEWMAN <rnewman@tpgi.com.au>: Announcing the establishment of a new email listserver (actually Majordomo - Ed.) in Australia, open to all, set up for both Transplant and dialysis discussion. It is still a small group and we would welcome your input. It can be found on the web, where there is an automatic subscribe site, found at http://www.wagga.net.au/transplant Second Wind discussion list --------------------------- (see Second Wind National Lung Transplant Patient's Association web site in section II below) Messages concerning lung diseases, lung transplants, problems, solutions, and life in general. Subscription form: http://www.arthouse.com/secondwind/join.htm L-TX-S@HOME.EASE.LSOFT.COM -------------------------- From Evelyn Heering (ev48@aol.com): This list is for the spouses, family members and caregivers of lung transplant recipients and of those waiting for lung tranpslants only. We are here to help each other cope with the waiting and the post transplant times as well. To subscribe to this list send your request to: L-TX-S-request@home.ease.lsoft.com Please include the diagnosis of your loved one, your relationship (spouse, parent, sibling, etc.) and whether the person has been transplanted or is waiting. ========================================================================= II. Organ and tissue transplant info via gopher and WWW ========================================================================= Gopher ------ (See also BMT gopher sites Part 2, section VII.) Book: Death to Dust: Organ Donation by Iserson ---------------------------------------------- Host=gopher.mcw.edu Port=72 Path=1/Bioethics Texts/Death to Dust: Organ Donation by Iserson URL: gopher://gopher.mcw.edu:72/11/Bioethics%20Texts/Death%20to%20Dust%3a%20Organ%20Donation%20by%20Iserson Yale biomedical gohper ---------------------- gopher://info.med.yale.edu:70/11/Disciplines/Discipline/Transplant Below is a copy of the menu contents for the Organ and tissue transplant information directory as of August 5, 1995. Bone Marrow Transplant Information (U. Penn. Med. School) Gallup Poll on Attitudes Towards Organ Donation HRSA organ transplantation fact sheet Back issues of UNOS Update/ June 1993, July-August 1993, September-October 1993, July 1994, October 1994/ Legislative history of organ donation Live kidney donor information National Resource Directory for transplant patients (updated 3/94) Organ trafficking myths/ 1. Critique of French film "Organ Snatchers" 2. Organ trafficking myths 3. Report to UN on Child Organ Trafficking Rumor 4. UNOS paper on organ theft myths Organ transplants increase; donation shows little change Relevant articles from National Kidney Foundation Newsletter Religious and cultural views on donation Transplant ethics/ 1. Evaluation of the ethics of presumed consent... 2. Financial incentives for organ donors 3. Preferred status for organ donors Transplant fund raising (from BMT Newsletter, 11/93) UNOS Brochures/ 1. Questions a patient should ask 2. What every patient needs to know Xenograft transplantation: "The Transplant Gap" World Wide Web -------------- American Liver Foundation disease information brochures ------------------------------------------------------- http://www.gastro.com/liverpg/livdz.htm American Share Foundation WWW page ---------------------------------- http://www.asf.org maintainer: jsabbott@ix.netcom.com (JOHN S. ABBOTT) Partial list of contents: Kid's Space 1995 Transplant Desk Reference Questions a Patient Should Ask Answers to Commonly Asked Transplant Questions What Every Patient Needs to Know about UNOS Transplant Centers OPOs - Organ Procurement Organizations Support Groups Support Groups, Newsgroups & Services The American Society of Transplant Physicians --------------------------------------------- http://www.astp.org/ ASTP is a multidisciplinary group of physicians and scientists dedicated to the promotion of education and research relating to transplantation medicine and immunology. News and abstracts of the journal "Transplantation" available. Biliary Atresia & Liver Transplant Network ------------------------------------------ http://www.asf.org/balt.html (see Part 3, section IIe) BODY British Organ Donor Society -------------------------------- http://www.argonet.co.uk/body/index.html This site covers topics on organ donation and transplantation, both in the UK and Worldwide. Your requests for topics you would like to see included are welcomed. Please send them to body@argonet.co.uk The Delaware Transplant Program (DVTP) -------------------------------------- http://clever.net/wwwmall/dvtp/index.html The Delaware Valley Transplant Program is the non-profit organ tissue donor program serving hospitals and patients in the eastern half of Pennsylvania, southern New Jersey and the state of Delaware. Founded in 1974, DVTP is one of the federally designated organ procurement organizations in the U.S. The program coordinates the recovery and allocation of organs and tissues for transplant and is a part of the nation's organ procurement and sharing network. DVTP is also the primary source for donor cards in the region and conducts hundreds of community and professional education programs each year. Donor Network of Arizona ------------------------ http://www.donor-network.org/dnet/ We are located in downtown Phoenix, Arizona 3877 N. 7th Street, Suite #200 Phoenix, Arizona 85014 (602)222-2200 1-800-94-DONOR -Organ Donation for Transplant and Research -Donation of Bones and Tissues for Transplant and Research -Eye Donation and Corneal Transplant -Public Education (General Donation & Transplant Information) -DNA'S Vital Link (A Quarterly Publication) -DNA'S Legislative Update The Friends' Health Connection ------------------------------ http://www.48friend.com The Friends' Health Connection is a non-profit organization and the premiere organization that provides customized, one-to-one support for individuals and/or their families with health-related problems. We now have a national toll-free phone line that you can call Monday through Friday, 9:00 AM-5:00 PM to speak directly with a representative from our organization. It is 1-800/48-FRIEND or 1-800/483-7436. e-mail: fhc@pilot.njin.net HCFA, The MEDICARE and MEDICAID Agency -------------------------------------- http://www.hcfa.gov Health care financing news, Information about the Medicare Program, etc. London Health Sciences Centre Multi-Organ Transplant Program ------------------------------------------------------------ Has several informative articles on organ donation and transplant information, with references. http://www.lhsc.on.ca/transplant/index.htm Missouri Kidney Program ----------------------- Contact person: David Patterson <mokpdave@muccmail.missouri.edu> http://www.missouri.edu:80/~mokpwww The Missouri Kidney Program in Columbia Missouri (MoKP). We are developing an End Stage Renal Disease (ESRD) and related issues web site for patients, providers and others who are interested. Currently our web site houses our most recent annual report detailing who MoKP is as well as some statistics about patients in Missouri. We also maintain to links to other related areas. NATIONAL ORGANIZATION FOR RARE DISORDERS (NORD),INC. ---------------------------------------------------- http://www.pcnet.com/~orphan/ This organization manages a drug cost share program for individuals who cannot afford Sandimmune (cyclosporine). See Part 3, section I. National Transplant Assistance Fund ----------------------------------- http://www.LibertyNet.org/~txFund Formerly National Heart Assist and Transplant Fund e-mail: txFund@LibertyNet.org VOICE 800-642-8399 / Fax 610-527-5210 National Transplant Assistance Fund is dedicated to providing financial, social and emotional support to transplant candidates. NTAF counsels patients regarding location and cost of transplant centers and other possible sources of financial assistance. NTAF helps the patients' families organize fundraising in their communities while assuring fiscal accountability as trustee. The organization is also deeply committed to educating the public about the critical need for organ donation, lecturing community groups on organ donor awareness and distributing free organ donor materials upon request. New England Organ Bank ---------------------- One Gateway Center Newton, MA 02158 800/446-6362 Contact address: info@neob.com http://www.ultranet.com/~neob/index.html Very nice on-line donor card available. Information on donation and transplantation Organ and Tissue Donation Transplantation Attitudes toward organ and tissue donation Deciding on organ and tissue donation The Gift of Life! Information on becoming and organ and tissue donor Print a donor card to sign. Tell your family. We will send you information. Just fill out this form. Information for Donor Families and Recipients NEOB Donor Family Services Donor Family Quilt Corresponding with donor families and recipients Novartis Pharma (formerly Sandoz) Transplant Square --------------------------------------------------------------------- http://www.magnet.ch/novartis/Tsquare/index.htm Just as the town square used to be the central meeting place where people exchanged information and ideas, the Transplant Square from Novartis Pharma Ltd. is being offered on the Internet as a service to the wordwide transplant community -- patients, healthcare professionals, support networks, and other interested audiences. We are committed to advancing the science of transplant medicine, and to providing you with up-to-date information in the field of transplantation. Organ Transplant Patient Home Page ---------------------------------- http://www.hooked.net/users/chartsf/txp/txphome.htm#chrono Carl Hart <chartsf@hooked.net>: There are numerous sites with transplant information; some pages are dedicated to health care practitioners, others to patients and their families. However, I found the information to be piecemeal, in no logical order. I began to think back to my own experience with my father's heart transplant: What information could I have used, and when could have I used it? Thus, I recognized that one way to present this information logically was to present it in a chronologically based Table of Contents: after the shock of the diagnosis and prognosis; becoming informed about the procedure; determining where the transplant may take place; qualifying for the treatment (i.e., meeting the medical and insurance/financial criteria); entering the transplant program; undergoing the transplant procedure; and, complying with the aftercare instructions and addressing complications. The Partnership for Organ Donation ---------------------------------- http://www.med.umich.edu:80/trans/transweb/partnership/index.html The Partnership is an independent, non-profit organization dedicated to saving and improving lives by closing the gap between the number of organ transplants that are possible and the number of organ transplants that actually occur. If you would like more information about us and the work we are doing to help solve the organ donor shortage, please contact us at info@organ-donation.org or call (617) 482-5746. Contents: How the Partnership Fulfills Its Mission Progress Notes: The Partnership's newsletter Progress Notes Archive Public education: A Different Kind of Love Letter and the Gallup Survey A brief history of The Partnership for Organ Donation A list of our Board members and Advisory Board members Recent press releases The Partnership's Bibliography The Partnership for Organ Donation Scientific Abstracts (accepted) Job opportunities (when available) Sponsors Renalnet Home Page ------------------ http://ns.gamewood.net//renalnet.html Partial contents: Dialysis Clinical Information ESRD Program Financing ESRD Providers ESRD Vendors and Manufacturers Government & Education Healthcare Resources Nephrology Professional Organizations Nephrology Research Presentations Organ Transplantation Featured General Healthcare Resources Second Wind National Lung Transplant Patient's Association ----------------------------------------------------- http://www.arthouse.com/secondwind/main.htm A Network of General Information and Support For both pre and post lung transplant patients and their families. -Members Network E-Mail Address Listings -Financing Transplantation -Members Stories & Letters -Information on Specific Lung Transplant Related Diseases -Member profiles E-mail Addresses ,homepage links -"AirWays" Newsletter -Articles & Items of interest -Nutrition Center -Organ Donation Information Stadtlanders' Pharmacy ---------------------- http://www.stadtlander.com Transplant National Resource Directory Article Archives: These articles have been adapted from Stadtlanders' magazine. Surviving Transplantation ------------------------- Dr. John Craven <jcraven@julian.uwo.ca>: Surviving Transplantation is intended as a guide to coping for persons undertaking major organ transplant. Any ideas contained within this book should be considered in the context of your personal health circumstances. As you will read in several places in Surviving Transplantation, we recommend that you consult a physician or another health professional before undertaking to make any changes in your personal health care. http://www.stjosephs.london.on.ca/SJHC/programs/mental/survive/st.htm TransWeb -------- TransWeb is a world wide web page for sharing information on organ donation and transplantation. The page is continuously seeking contributions of new material, as well as ideas for making it a more useful forum for the transplantation community. TransWeb can be found at http://www.transweb.org and suggestions and contributions can be sent to transplant.webmaster@umich.edu Partial list of contents: Focus on Transplant Patients Ask TransWeb Frequently Asked Questions Experiences with Transplantation and Donation Transplant Medications New Developments in Transplantation Policy and Legislative Updates Support, Advocacy, and Educational Groups & Resources The Transplant Memorial Reading List, Articles, Videos, etc. Information for Medical Professionals New Developments in Transplantation Political/Legislative Updates Ask TransWeb Cybercongress: Transplantation in the Next Millennium Congress on Xenotransplantation UNOS's Calendar of Events Organ and Tissue Donation: A Gift of Life Test Your Knowledge of Organ Donation! The Donation Quiz Frequently Asked Questions: Top Ten Misconceptions about Donation Can well-connected people like Mickey Mantle get transplants faster? How many people need organs? See also thewaiting list statistics at UNOS. Does my religion approve of donation? What kinds of tissue can be donated? What do I do if I want to donate? Can I donate NOW? Where can I register to be a bone marrow donor? Articles About Donation: The Tissue Shortage From Oncolink: Measures to Safeguard Human Tissue Transplants Experiences With Donation: Feelings of a Living Kidney Donor A bone marrow donor's experience A special thank-you letter "The Gift That Lives On" Promoting Donation: The Wendy Marx Foundation The Transplant Memorial Transplantation Resources on the Internet (A comprehensive list of links for related sites on the net.) Transplant News ---------------- http://www.trannews.com/ The only independent newsletter offering timely news on Organ, Tissue, Eye and Bone Marrow Procurement and Transplantation. Find out how to receive a FREE copy of the Transplant Video Journal. UCLA Transplantation -------------------- http://www.medctr.ucla.edu/dept/xplant/default.htm So far available is a description and statistics of the Dumont-UCLA Transplant Center. Other things under construction: Abstracts not Currently under Copyright A Moderated Newsgroup on Issues in Liver Transplantation Static and Video Images of Procedures Slide Show Presentations University of Colorado's Organ Transplant Web Page -------------------------------------------------- http://www.uchsc.edu/ctrsinst/organtx/ UNOS Transplantation Information Site ------------------------------------- (See also section VII for more information on UNOS.) http://www.ew3.att.net/unos UNOS is a non-profit organization 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. Issues of the very informative news magazine UNOS Update have begun to be posted. The site also has up-to-date transplant statistics, resources available, and calls for public comment on policy changes. ========================================================================= III. Organ donation and transplantation, frequently asked questions ========================================================================= contributed by Alex Bost, alex@unx.sas.com *** Commonly Asked Questions About Being an Organ Donor: - Where can I get an Organ Donor Card? Many organizations, including the NKF and AAKP will provide donor cards free of charge. Many physicians, pharmacies, and hospitals will also provide them. [Free cards and pamphlets also available from (800)24-DONOR] - Should I mention being an Organ Donor in my Will? No. Your will may be read too late to take your organs. However, you should definitely mention Organ Donation in your Living Will. - What is a Living Will? A Living Will is a document where you stipulate what kind of medical attention you will receive if you are unable to make decisions for yourself. You may state your wish to become an organ donor in a Living Will. - Who pays for the medical costs of being a donor? The transplant recipient is responsible for all costs involved in organ procurement. The donor's family will not pay any of the cost. - Does organ donation disrupt funeral arangements? No. Organ donation will not disfigure the body. A donor may still have an "open casket" funeral. - Will becoming a donor mean a doctor will let me die? Absolutely not! Medical personnel must follow very strict guidelines before a donor can be pronounced dead. You can expect the same quality of health care as you would if you weren't a donor. ------------------------------------------------------------------------ The following was written by Anne Treffeisen of the Long Island Chapter of TRIO (Transplant Recipients International Organization) (516-421-3258). The week of April 21-27 is National Organ and Tissue Donor Awareness Week (NOTDAW). She asks that pastors or rabbis include mention of the gift of life in their sermon or bulletin during this week and provides this message as a guide. ORGAN DONATION AND TRANSPLANTATION FACT SHEET The donation of organs is a unique opportunity to save lives. It is possible for the organs, tissues, and corneas of a single donor to save or help as many as 25 people. Transplantation works. As of 1993, over 160 thousand people have been transplanted, and the majority are living full productive lives more than five years after surgery. Over 28,000 people in the United States, many of them children under 10 years of age, are currently waiting for transplants, and someone is added to the waiting list every 30 minutes. Many will die waiting. All potential recipients are listed on the United Network for Organ Sharing, UNOS, computer. Organs are assigned as they become available considering the severity of a patient's condition, medical requirements (such as blood type, size, and tissue match), proximity to the available organ, and time on the waiting list. More organ donors are needed. Only about 20% of the potential donors actually have their organs donated. Organ donors are healthy people who have died suddenly, usually through accident or head injury. They are brain dead. The organs are kept alive through mechanical means. No one involved with the life saving care of an individual is involved in the transplantation or organ recovery process. No one on the transplant team has any role in the diagnosis, treatment or declaration of death of a patient. Organs for transplant must be made available soon after death. Organ removal will not take place without the permission of the next of kin. Therefore, the decision to donate should have been discussed earlier and the next of kin should understand and be prepared to carry out their loved one's wishes. This is the heart of DONOR AWARENESS. There is no cost or payment to the donor family or estate. All normal funeral arrangements are possible. All religious groups approve of organ and tissue donation as charitable acts toward one's fellow human beings. Organ donation is a true gift. In general, the donor family will never know the recipient. They do know that out of their tragic loss, they have given others life and health. Questions frequently asked by transplant patients: -------------------------------------------------- (see also UNOS pamphlets in Yale biomed gopher, information in TransWeb, American Share Foundation WWW site, section II) Contributed by Joel Newman <newmanjd@UNOS.ORG>, UNOS Manager of Corporate Communications *What's my position on the list? Candidates and donors are matched by data, not rank. The only thing you could be "ranked" by, in theory, is your waiting time. You could be #1 on your local list by waiting time, having waited longer than everyone else. However, if you're blood type B and a type A organ comes along, you'd automatically be excluded. The same is true for organ size, tissue match, etc. Given that all donors and all candidates differ in some respects, you could be 20th on the list for one offer, 3rd for the next, then 57th, then 1st. Even if you're at the "top of the list," you may not get the organ. Perhaps you have a complication that would preclude getting a transplant for a few days or weeks. Maybe in reviewing the lab work or donor history the transplant team has cause to defer the offer. Perhaps, if you're highly sensitized, the initial crossmatch is OK but the final crossmatch comes back bad. There are lots of scenarios. Any refusals and the explanations would be submitted to UNOS. Organs other than kidneys are most often transplanted into one of the first 10 candidates identified on the match run. For kidneys that rate is much lower, particularly because of highly sensitized patients with adverse crossmatches. With specific, written permission from the patient and from the listing center, UNOS can provide the basic information on patient listing (date of entry, current medical status, etc.). But I'd *beg* you to call the center first on this if you have any questions! And again, for all the reasons above, this would be meaningless as an expression of your "rank" for a transplant. For more detail: http://www.med.umich.edu:80/trans/transweb/faq/faq_pos_list.html *Where is the best transplant center? We (UNOS) maintain(s) data on center-specific graft and patient survival. The current report covers all transplants occurring between 10/1/87 and 12/31/91. You can request data free on up to 10 transplant programs; after that we recommend you purchase either the set of data or the specific volume you need. I believe the entire report is also available via ftp on some obscure HCFA site; even I don't know the address. (I'd warn you, though -- it's a huge report.) That report will tell you quite a bit, but there's a lot it can't. There are some risk factors we're unable to quantify at this point but might affect outcome. There is also pure chance, which we can never completely eliminate. For example, a recipient with a perfectly functioning transplant who gets run over by a truck is still counted as a death, graft-related or not. The numbers can never tell you the whole story, either. I think any surgeon or physician would tell you that the patient's outlook and attitude have a great effect on outcome. If you really like (or really hate) the care you're getting, the numbers have less meaning. I'd advise you to look at the numbers, get some recommendations from people in similar need, and then talk to the people at the program(s). ========================================================================== IV. The organ donor shortage ========================================================================== UNOS statistics reveal that in 1993, on average, 8 people a day died in the US while on the waiting list. As organ transplantation has passed out of the experimental stage, the number of people with end stage diseases seeking a transplant has slowly but steadily increased. The number of donations however, has not increased. Sadly, this is not because there are not more potential donors. Various estimates are that anywhere from 60 to 70% of potential donations are either refused by the next-of-kin or are never requested. These estimates take into account the criteria for brain-dead, heart-beating donors and other contraindications. Roughly half of the missed donations appear to result from failure of physicians to either declare brain death in a timely manner, or their failure to notify their Organ Procurement Organization of potential donors. This is despite enactment in all 50 states of "required request" legislation that mandates that all potential donations be sought. Apparently, there is no enforcement of these laws. There are a variety of proposals to increase the number of donations. For example: public and professional education, giving people who have registered their support for donation additional points on the waiting list should they ever need a transplant themselves (preferred status), changing the structure of donation from a required opting-in to a required opting-out strategy (presumed consent), and requiring all adults to register their choice of whether they would permit donation in the event of their death (mandated choice or required response). There are also, on occasion, issues raised in the media that might be of interest to medical ethicists, but which would have little to no positive impact on the number of organs available for transplantation. Organ donation from anencephalic infants and executed convicts, for example, are issues that could possibly distract attention from the more important issue of obtaining wide spread support for donation. In the 1994 September 14th issue of JAMA, the AMA has finally (after nearly a year of delay after the policy's adoption) made public its recommendation that states enact into law a mandated choice policy. The length of time it has taken to make this policy public indicates the medical community's inability to appreciate that this is a crisis situation for those patients on the waiting list whose lives could potentially be saved. It also indicates that there are individuals who do recognize the seriousness of the situation and are working to move their colleagues toward a feasible solution. References: Siminoff LA, Arnold RM, Caplan AL, Virnig BA, Seltzer DL Public Policy Governing Organ and Tissue Procurement in the United States, Results from the National Organ and Tissue Procurement Study Ann. Intern. Med. 1995 July 1;123:10-17 Note: Some of the conclusions in this study are at odds with those of studies conducted by The Partnership for Organ Donation. Council on Ethical and Judicial Affairs, American Medical Association Strategies for Cadaveric Organ Procurement. JAMA 1994 Sept.14;272(10):809-12 Murray TH, Youngner SJ Organ Salvage Policies, A Need for Better Data and More Insightful Ethics. (editorial) JAMA 1994 Sept.14;272(10):814-5 Wolf JS The role of the United Network for Organ Sharing and designated organ procurement organizations in organ retrieval for transplantation. Arch Pathol Lab Med 1991 Mar;115(3):246-9 Prottas J Batten HL Health professionals and hospital administrators in organ procurement: attitudes, reservations, and their resolutions. Am J Public Health 1988 Jun;78(6):642-5 Annas GJ The paradoxes of organ transplantation [editorial] Am J Public Health 1988 Jun;78(6):621-2 Evans RW Orians CE Ascher NL The potential supply of organ donors. An assessment of the efficacy of organ procurement efforts in the United States. JAMA 1992 Jan 8;267(2):239-46 Spital A Mandated choice. The preferred solution to the organ shortage? Arch Intern Med 1992 Dec;152(12):2421-4 Mandated Choice for Organ Donation: Time To Give It a Try MD Annals of Internal Medicine, 1 July 1996. 125:66-69. http://www.acponline.org/journals/annals/01jul96/inbalan1.htm Gnant, M.R.X., et al., The impact of the presumed consent law and a decentralized organ procurement system on organ donation: quadruplication in the number of organ donors. (1991) Transplantation Proceedings, 23(5):2685-2686. Michielson, P. Organ shortage-What to do? [Presumed consent in Belgium] (1992) Transplantation Proceedings, 24(6):2391-2392. Kott, Andrea., Organ Procurement Programs in State of Emergency. Medical World News Feb 1992, v33n2, p. 15-16 Lee, P.P., Kissner, P., Organ donation and the Uniform Anatomical Gift Act. (1986) Surgery 100:867-875. "Solving the Organ Donor Shortage", The Partnership for Organ Donation, Inc. (617)482-5746. UNOS Ethics Committee Reports on alternatives for organ donation: "Financial Incentives for Organ Donation" "Preferred Status for Organ Donors" "An Evaluation of the Ethics of Presumed Consent and a Proposal Based on Required Response" - available from UNOS (804)330-8500 - also available through the Yale biomedical gopher (see section II) Gallup Poll on Attitudes Towards Organ Donation, available in the Yale biomedical gopher and Transweb (see section II), and from The Partnership for Organ Donation, Inc. (617)482-5746. ========================================================================== V. Transplant and organ donation myths ========================================================================== As with any new technology, rumors, myths and misunderstandings about organ transplantation are widespread. Frustration produced by the high cost, the effect of the organ donor shortage, and the unavailability of transplantation throughout most of the rest of the world have probably contributed to this. Since rumors can often be more entertaining than the truth, tabloid media will often pick up and help spread them, despite the great harm they cause. Urban legends about organ transplantation are uniquely dangerous since organ transplantation can not succeed without the participation and support of the majority of the population. Bad press, urban legends, even fiction portraying organ transplantation as somehow evil, all have prevented full support for donation and led to the death of people who might otherwise be leading productive and happy lives now. Another factor fueling the proliferation of myths is the unfortunate institution in India of payment for unrelated live kidney donation that preys on the poor in that country. While it may be true that the Indian medical community is not required to abide by western standards of ethics, neither is the US medical community required to interact with them, train their physicians, publish their research, etc. Its past time that the US medical community started taking visible responsibility for influencing transplantation ethics in foreign countries. Mani, M.K., Renal Transplantation in India. (1992) Transplantation Proceedings, 24:1828-9. Kott, Andrea., Organ Procurement Programs in State of Emergency. Medical World News Feb 1992, v33n2, p. 15-16 Gallup Poll on Attitudes Towards Organ Donation, available at http://www.med.umich.edu:80/trans/transweb/gallup_survey/gallup_index.html and from The Partnership for Organ Donation, Inc. (617)482-5746. 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 II and Part 2, section II), a nonprofit 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 employed 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: "THE CHILD ORGAN TRAFFICKING RUMOR: A MODERN `URBAN LEGEND'" A REPORT SUBMITTED TO THE UNITED NATIONS SPECIAL RAPPORTEUR ON THE SALE OF CHILDREN, CHILD PROSTITUTION, AND CHILD PORNOGRAPHY BY THE UNITED STATES INFORMATION AGENCY, by Todd Leventhal, USIA Senior Policy Officer, and "UNOS paper on organ theft myths", both available through the Yale biomedical gopher (see section II) and http://www.usis.usemb.se/topics/bp-unrep.txt The New Orleans Police Department has put their Official Statement online at http://www.mardigrasday.com/police.html regarding the persistant urban legend of kidney snatching. 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 few 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: Too Good to Check, Anti-Americanism: A rise in suspect reports that children are being abducted or their organs. Newsweek, June 26, 1995, pg. 33. 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) 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 also 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 and other awareness materials ========================================================================== 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. from Karen Couture <kcouture@gate.net>(December `95): Southwestern Michigan/TRIO have been collecting signatures for a proposed stamp honoring organ and tissue donation. On Oct. 3, 1995 284,242 signatures in support of the stamp were shipped to the Citizens Stamp Advisory Committee in Washington, DC. Currently the stamp remains under consideration. They are currently working on stamp porgrams for 1998 and beyond. In the past SW Michigan has been advised that they need to show national interest. They have signatures from all 50 states, the District of Columbia and a total of 25 countries. As of Nov. 13 they have 285,795 signatures. And are continuing to accept and count signatures. The person to contact for info. and sheets to collect signatures is.... Gary Rouse President/Organ Transplants of Southwestern Michigan/TRIO PO Box 8786 Benton Harbor, MI 49023 616-423-6450 From Ken Lifton (January 1995): Over 250,000 signatures have been collected in the organ donation postage stamp campaign around the country and forwarded to the Citizen's Stamp Advisory Committee (I believe). I am sad to report that the man who started the effort, Ed Heyn (kidney recipient), died last month. The support group he founded (Organ Transplants of Southwest Michigan -- now a TRIO Chapter) has vowed to carry on the work of Ed's dream of the stamp. Many persons and groups around the country have been collecting signatures. Unfortunately up until now the Citizen's Stamp Advisory Committee, I believe considers the Stamp "controversal". Lets all redouble our efforts and write to the address (below). "The address people can write to, in favor of an Organ Donation Stamp is: Citizen's Stamp Advisory Committee c/o Stamp Management U.S. Postal Service 475 L'Enfant Plaza, SW Room 4474E Washington, DC 20260-2437 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 Part 2).