FAQ: bit.listserv.transplant, Organ transplant ng (Part 1 of 4)


Michael Hollowa

Archive-name: medicine/transplant-faq/part1

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Part 1 of bit.listserv.transplant FAQ

Last updated 3/23/02

Updated subscribe information for DIALYSIS email discussion list Part 1, section I.

Contents Part 1:
I. Discussion forums TRNSPLNT mail list - How to subscribe DIALYSIS mail list - How to subscribe
Caregivers Support Group Australian Transplant and Dialysis discussion list Second Wind
discussion list Kidney/Pancreas Support Group HTX, Heart and Lung Transplant Support Group LiverSupport-
L The Organ Transplant Support Group Chat List of weekly transplant chats online
II. Selected 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:
VII. Things your doctor may not have told you - Bits of advice for transplant patients Everyday
stuff Drinking water Ibuprofen Packing for the hospital
VIII. 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

Part 3:
VIII. National Transplant Patient Resources Directory
IX. 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 http://www.faqs.org/faqs/medicine/transplant-

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,
Dorothy Bourdon, and Luis Enrique Acero.

Mike Holloway [email protected]

V. 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 [email protected] 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 [email protected]

Below is the introduction to TRNSPLNT written by Dan Flasar. Since Dan started the group early in
1993 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 [email protected]

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

Archives of TRNSPLNT postings can be listed by sending an INDEX TRNSPLNT command to
[email protected]

To subscribe, send the following command to [email protected] via email:


where "Your Full Name" is your name. For example:


Owner: Dan Flasar [email protected]

A web page form is also available for subscribing at http://trnsplnt.tsx.org

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!

(from Julie <[email protected]> )

To subscribe to the list see http://groups.yahoo.com/group/dialysis_support/ or email dialysis_support-
[email protected]

Chat groups

The Lung Transplantation Page Chat http://homestead.deja.com/user.lungtxpsych/index.html

WEEKLY TRANSPLANT CHATS ONLINE From Kandy S. Florida <[email protected]>:

Sunday, 9:00 PM ET, Organ Transplant Chat Talk City
http://www.geocities.com/~rolo1/community.html Contact: [email protected] Sunday, 10:00 PM ET,
Kidney/Pancreas Transplant, AOL: Private Room aol://2719:2-2-kidney%20pancreas%20tx Contact:
[email protected] Monday, 7 PM ET, Kidney/Pancreas Transplant Chat OTA:
http://organtx.org/chatroom.htm Contact: [email protected] Monday, 8:00 PM ET, Donor Awareness,
AOL: allHealth, aol://2719:3-1453-Helping%20Hand%20Cafe Contact: [email protected] or HOST AHTH
[email protected] Monday, 9:00 PM ET, Liver Disease & Transplant AOL: allHealth, aol://2719:3-691-
Mutual%20Support%20Room Contact: HOST AHTH [email protected] or HOST [email protected] Tuesday, 8:00 PM
ET, Organ Transplantation & 2000 U.S. Transplant Games Team Minnesota
http://www.sadiehawkins.com/gameschat.htm Contact: ****@sadiehawkins.com Tuesday, 9:00 PM ET,
Carols lung tx room AOL: Private Room, aol://2719:2-2-Carols%20lung%20tx%20room Tuesday, 9:00 PM
ET Bone Marrow Transplant AOL: Private Room, aol://2719:61-2-bmt%20support%20online Tuesday,
10:00 PM, Kidney Pancreas Transplant AOL: Private Room, aol://2719:2-2-kidney%20pancreas%20tx
Contact: [email protected] Wednesday, 7:00 PM ET, All Organs & Tissues Transplant DrKoop:
Communities: Health Central
t/chat.asp?room=healthcentral Wednesday, 9:00 PM ET, Liver Disease and Transplants OTA:
http://organtx.org/chatroom.htm Contact: [email protected] Wednesday 10: 00 PM ET, Kidney/Pancreas
Transplant Chat & ESRD AOL: allHealth, aol://2719:3-691-Mutual%20Support%20Room Contact: HOST
AHTH [email protected] or HOST AHTH [email protected] Thursday, 7:00 PM ET, Heart Transplant AOL:
allHealth, aol://2719:3-193-Health%20Conference Contact: HOST AHTH Max Thursday, 8:00 PM ET,
Organ Transplantation & 2000 U.S. Transplant Games Team Minnesota
http://www.sadiehawkins.com/gameschat.htm Contact: ****@sadiehawkins.com Thursday, 9:00 PM ET
Bone Marrow Transplant AOL: Private Room, aol://2719:61-2-bmt%20support%20online Thursday, 9:00
PM ET, Lung Transplant Chat SecondWind: http;//www.2ndwind.org/main.htm Contact:
[email protected] Thursday, 10:00 PM ET, Children's Liver Chat Children's Liver Alliance
http://www.livertx.org Contact: [email protected] or call 718-987-6200. Friday, 8:00 PM
ET, Kidney Disease & Transplant AOL: Private Room, aol://2719:2-2-Kidney Contact:
[email protected] Friday, 9:00 PM ET All Organs & Tissues Transplant AOL: allHealth, aol://2719:3-49-
Positive%20Reflections Contact: HOST AHTH [email protected] or HOST [email protected] Saturday, 7 PM
ET, Dealing with End-Stage Disease and Death OTA: http://organtx.org/chatroom.htm Saturday 9:00
PM ET, Parents of Bone Marrow Tx Recipients AOL: Private Room: aol://2719:61-2-
bmt%20support%20online Satuday 9:00 PM ET, Transplant Pre n Post Support Community Talk City:
www.tpnp.org/community.html, #Transplant channel Contact: [email protected]

Caregivers Support Group
From Evelyn Heering ([email protected]): This list is for the spouses, family members and caregivers of
lung disease patients, 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: [email protected] Please include the
diagnosis of your loved one, your relationship (spouse, parent, sibling, etc.) and whether the
person has been transplanted or is waiting.

Australian Transplant and Dialysis discussion list
RALPH NEWMAN <[email protected]>: 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
http://www.2ndwind.org) Messages concerning lung diseases, lung transplants, problems, solutions,
and life in general. Subscription form: http://www.2ndwind.org/join.htm

Kidney/Pancreas Support Group
Since dealing with the long term chronic condition and complications from years of Diabetes, still
affects people after a transplant, we formed this group a few years ago to deal with those issues.
Many people stay on both lists. We now have about 75 people participating in the KPTX group.

To subscribe, Send a blank email to: [email protected]

If you have questions or problems, write to me at: [email protected]

HTX, Heart and Lung Transplant Support Group
Chris Molnar ([email protected]) HTX - An online mailing list for support and information sharing
for families and individuals dealing with heart or heart-lung transplants due to childhood-onset
heart disease. Subscribers facing the possibility of transplant or otherwise interested in the
issues surrounding transplanted survivors of childhood-onset heart disease are also welcome. To
subscribe: send email to: [email protected] message: subscribe htx

from Ron Koestler [[email protected]] [email protected] The list owner can be reached
at [email protected] People can subscribe by sending mail to LiverSupport-L-
[email protected]

The Organ Transplant Support Group Chat
http://www.jensoft-cs.com/icqlist.html We encourage all members to get ICQ and provide us with their
ICQ numbers. We will list the ICQ numbers of all members, allowing quick contact with members for
anyone who may visit this page. ICQ empowers members with a means to chat whenever they like and
enables them to share ideas, discuss similar interests or anything else.

II. Selected organ and tissue transplant info via gopher and WWW
There is no attempt here to make a comprehensive list of web resources for transplantation. Instead,
the sites below are meant to provide some of the best resources for patients and the general public,
with particular reference to information on organ donation.

Yale Biomedical Gopher gopher://info.med.yale.edu/11/Disciplines/Disease/Transplant/

Contents: Bone Marrow Transplant Information (U. Penn. Med. School) Gallup Poll on Attitudes Towards
Organ Donation HRSA organ transplantation fact sheet Directory Issues of UNOS Update Legislative
history of organ donation Live kidney donor information National Resource Directory for transplant
patients (updated 3/94) Organ trafficking myths Critique of French film "Organ Snatchers" Organ
trafficking myths Report to UN on Child Organ Trafficking Rumor 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 Transplant fund
raising (from BMT Newsletter, 11/93) UNOS Brochures Xenograft transplantation: "The Transplant Gap"

World Wide Web

American Liver Foundation disease information brochures

American Share Foundation WWW page
http://www.asf.org maintainer: [email protected] (JOHN S. ABBOTT) Partial list of contents:
Kid's Space=20 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

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 [email protected]

Coalition on Donation
http://www.shareyourlife.org/ Slick web page with donor education and myths information. "The
Coalition on Donation is a not-for-profit alliance of local coalitions and national organizations
who have joined forces to promote organ and tissue donation. The Coalition has created national
education/action campaigns for distribution by our 50 local coalition affiliates."

The Delaware Transplant Program (DVTP)

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: [email protected]

Gift of Life Trust Fund of South Carolina
http://www.giftoflife-sc.org/ Site includes information on organ donation, support groups and
programs for transplant patients, patient stories, and links to other information sites.

http://www.hcfa.gov Health care financing news, Information about the Medicare Program, etc.

HHS organ donation information
http://organdonor.gov/ Wide array of information on organ donation and organ donor education.
Current statistics. National Donor Sabbath information. Donor card.

HHS/HRSA Solid Organ Transplantation Information

Technical Data - Includes statistics on the Waiting List, Number of Organs Recovered and
Transplanted, Survival Rates, etc. Fact Sheets Glossary of Terms Commonly Asked Questions about
Organ Donation - Includes excerpts from Questions & Answers about Organ Donation, as well as links
to Steps Involved in Donation and Transplantation, How are Recipients Matched to Donor Organs, and
Why Should Minorities be Particularly Concerned about Organ Donation? History of the OPTN and
Scientific Registry - Includes summarized organ allocation policies, Scientific Registry
information, and a brief history of UNOS and its role in the OPTN and Scientific Registry. Organ
Procurement Organizations (OPOs) by State List of UNOS Member Transplant Programs by State

Life Connections of Ohio
http://www.mco.edu/hosp/lifeconn Contains excellent information on donation and transplantation, as
well as extensive answers to frequently asked questions about donation. Mission Life Connection of
Ohio is dedicated to increasing and facilitating the recovery of high quality organs and tissues for

London Health Sciences Centre Multi-Organ Transplant Program
Has several informative articles on organ donation and transplant information, with references.

Missouri Kidney Program
Contact person: David Patterson <[email protected]>
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 Donor Sabbath Resource Kit 1997
http://www.transplantawareness.org/sabbath/CONTENTS.html Jennifer Grant at the HHS Division of
Transplantation has assembled opinions from all religious organizations in the US regarding organ
donaiton, and give suggestions of how congregations can participate in the National Donor Sabbath
(Nov. 13-15, 1998).

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:
[email protected] 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
603/446-6362 Contact address: [email protected] 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.transplantsquare.com/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 Association
http://organtx.org/ A web site organized by patients, families, and volunteers for the purpose of
providing resources and support over the Internet. Contains the archives Kandy Darroch's "Medical
Meanderings" newsletter. Medical Meanderings contains informative articles on transplantation
topics. The site also contains a list of organizations providing financial support, or counseling,
to transplant patients, a well maintained list of transplant related chat groups, information on
laptop lending to patients in the hospital, and other useful resources.

Organ Transplant Patient Home Page
http://www.hooked.net/users/chartsf/txp/txphome.htm#chrono Carl Hart <[email protected]>: 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

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 [email protected] 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.2ndwind.org 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 <[email protected]>: 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.

Transplant Awareness Inc.
Transplant Awareness Inc. sells T-shirts, car license plate frames, pins, and other items, which
have slogans that promote organ and tissue donation. TAI is a nonprofit corporation run and operated
by volunteers who are all organ transplant recipients. Our objective is to market products that will
promote organ donation by increasing awareness among the general population. It is our hope that
TAI's efforts will result in more organs being donated and more lives being saved and prolonged in
the manner that our lives were. Since we are all non-paid volunteers, 100% of the profit from the
sale of our merchandise goes to increasing organ and tissue transplantation awareness. We thank our
donors for the lives we can now live and we thank you for your patronage of our efforts. Wide
variety of donation and patient resources listed under "Other Transplant Resources "

http://www.transplanthealth.com is an educational Web site that offers transplantation information,
message boards, and interactive features for kidney, liver, and other organ recipients and donors.
Features patient education information, a message board, and information links. On-line
registration required.

http://www.transplantweek.org Latest news about transplanation. The Transplant Week online
newsletter, presenting the latest news and views on developments in transplantation, is one of a
family of specialized medical newsletters brought to you by Medical Week, LLC

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 [email protected]

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.

TRIO (Transplant Recipients International Organization, Inc.)
http://www.primenet.com/~trio/ TRIO is a major transplant patient support, and government lobbying,
organization. This site offers recipient and donor family support. Large available publications
list. Current news. Local chapter information. Email: [email protected]

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

UNOS Transplantation Information Site
(See also section VII for more information on UNOS.) http://www.unos.org

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.

World Children's Transplant Fund
http://www.wctf.org/ The World Children's Transplant Fund (WCTF) is a unique and special
organization. Our mission is to provide as many opportunities as possible for lifesaving pediatric
transplant surgery to children of the world. Our goal is to assist nations in developing and then
sustaining independent pediatric organ transplant programs. Coordinating and sharing of our medical
resources enables children of lesser developed countries access to the chance which children of the
United States routinely have...the chance for life. The Strategy of the World Children's Transplant
Fund focuses on developing World Children's Transplant Centers attached to preexisting medical
facilities in each of the selected site locations. World Children's Transplant Fund 16000 Ventura
Blvd. Suite 103 Encino, California 91436 Phone: (818) 905-9283 Fax: (818) 905-9315 E-Mail to:
[email protected]

III. Organ donation and transplantation, frequently asked questions

contributed by Alex Bost, [email protected]

*** 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 last week of April 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.


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 <[email protected]>, 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.


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

"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.

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 -
[email protected]: 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

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.

UNOS web site's Top Ten Myths About Donation http://www.unos.org/Newsroom/Frame_news.asp?SubCat=myth

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.

An extremely informative article about the confusion surrounding brain death is at http://www.pitt.edu/~cep/41-
3.html. It's extremely important that everyone concerned about organ donation understands this
issue. Medical professionals themselves are guilty of perpetuating misunderstandings and myths about
brain death and organ procurement. This may be the single most significant factor working against
organ donation.

The Partnership for Organ Donation (see section II and Part 2, section
VI), 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

Let's Abolish "Brain-Death", Community Ethics / Volume 4, Number 1, http://www.pitt.edu/~cep/41-

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.


Debunking the Kidney Heist Hoax http://www.unos.org/Newsroom/archive_statement_022197.htm

The New Orleans Police Department has put their Official Statement online at
http://www.mardigrasday.com/police1.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:
[email protected] 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. (The international issue had a longer article on the
same subject http://www.concentric.net/~Holloway/toogood.txt)

Leventhal, THE "BABY PARTS" MYTH: THE ANATOMY OF A RUMOR. UNOS Update, May 1994 (also available from
Todd Leventhal [email protected])
gopher://info.med.yale.edu/00/Disciplines/Disease/Transplant/Myths/myths.txt http://www.usis.usemb.se/topics/bp-

Leventhal, Critique of French film "Organ Snatchers"
http://www.urbanlegends.com/medical/organ.theft/ body_snatchers_film_debunking.html

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.

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.


Kallich JD. Wyant T. Krushat M., The effect of DR antigens, race,

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.
665(1):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
After nearly two decades of work by many individuals the Postal Service has finally seen fit to
issue a stamp to raise donor awareness. http://www.usps.gov/news/stamps/98/98084stp.htm

From e-mail to TRNSPLNT from Debi Surlas 7 Aug 1998

The New Donor Awareness postage stamp went on sale nationally on August 6th. But, unfortunately,
this stamp is not being automatically sent to all post offices. Unlike most special issue stamps
(like the Breast Cancer Awareness and even the Alfred Hitchcock stamps), this one has to be
specifically ordered by all but a few post offices. So, if yours does not have the new stamp, ask
them to order a supply, and encourage everyone you know to use the stamp while it is available. It
is available in the newer self-adhesive form.

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 http://www.unos.org (see Part 2). Transplant Awareness
Inc. http://www.transplantawareness.org/

Organ Donor Awareness Apparel
Hats, shirts, and jackets with donation slogans PO Box 18812 Tucson, AZ 85731 Phone: (520) 574-8358

Transplant tee-shirts Hanging By a Thread 391 E. Las Colinas Blvd. Suite 130-456 Irving, Texas 75039
http://www.hangingbyathread.com/page2.html Email at [email protected]