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

( Part1 - Part2 - Part3 - Part4 )
[ Usenet FAQs | Web FAQs | Documents | RFC Index | Forum archive ]
Archive-name: medicine/transplant-faq/part1

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of the Revised Code of Washington.

Part 1 of bit.listserv.transplant FAQ

Last updated 3/23/02

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

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
	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

Part 2:
I. Things your doctor may not have told you - Bits of advice for transplant
	Everyday stuff
	Drinking water
	Packing for the hospital
II. Sources of information on organ and tissue donation, transplantation,
     and transplant centers
	Patient support groups, services, books and videos
	Religious organizations views on organ donation
		- National Donor Sabbath web site
	List of US lung transplant centers
	Living-Related Liver Transplant Programs in the US
III. Non-US professional transplant organizations and patient support
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 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 where faqs are listed under newsgroup hierarchy.

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

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

Mike Holloway

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
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 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 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

    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

    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


A web page form is also available for subscribing at

    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 <> )

To subscribe to the list see
or email

Chat groups

The Lung Transplantation Page Chat

 From Kandy S. Florida <Kandysfl@AOL.COM>:

   Sunday, 9:00 PM ET, Organ Transplant Chat
       Talk City
   Sunday, 10:00 PM ET, Kidney/Pancreas Transplant,
        AOL: Private Room aol://2719:2-2-kidney%20pancreas%20tx
   Monday, 7 PM ET, Kidney/Pancreas Transplant Chat
   Monday, 8:00 PM ET, Donor Awareness,
        AOL: allHealth,  aol://2719:3-1453-Helping%20Hand%20Cafe
        Contact: or HOST AHTH
   Monday, 9:00 PM ET, Liver Disease & Transplant
        AOL: allHealth,   aol://2719:3-691-Mutual%20Support%20Room
        Contact: HOST AHTH or HOST
   Tuesday, 8:00 PM ET, Organ Transplantation & 2000 U.S. Transplant Games
       Team Minnesota
   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
   Wednesday, 7:00 PM ET,  All Organs & Tissues Transplant
       DrKoop: Communities: Health Central HREF="">
   Wednesday, 9:00 PM ET, Liver Disease and Transplants
   Wednesday 10: 00 PM ET,  Kidney/Pancreas Transplant Chat & ESRD
       AOL: allHealth,  aol://2719:3-691-Mutual%20Support%20Room
       Contact: HOST AHTH or HOST AHTH
   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
   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;//
   Thursday, 10:00 PM ET, Children's Liver Chat
        Children's Liver Alliance
        Contact:  or call 718-987-6200.
   Friday, 8:00 PM ET, Kidney Disease & Transplant
        AOL: Private Room, aol://2719:2-2-Kidney
   Friday, 9:00 PM ET All Organs & Tissues Transplant
        AOL: allHealth,  aol://2719:3-49-Positive%20Reflections
        Contact:  HOST AHTH or HOST
   Saturday, 7 PM ET, Dealing with End-Stage Disease and Death
   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:, #Transplant channel

Caregivers Support Group
 From Evelyn Heering (
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: ASSIST-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.

Australian Transplant and Dialysis discussion list
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

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:

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:

If you have questions or problems, write to me at:

HTX, Heart and Lung Transplant Support Group
Chris Molnar (
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:
message: subscribe htx

from Ron Koestler []  The list owner can be reached at  People can subscribe by sending mail to

The Organ Transplant Support Group Chat
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

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
maintainer: (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
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
(see Part 3, section IIe)

BODY British Organ Donor Society
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

Coalition on Donation
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

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
We are located in downtown Phoenix, Arizona
3877 N. 7th Street, Suite #200
Phoenix, Arizona 85014
-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
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.

Gift of Life Trust Fund of South Carolina
Site includes information on organ donation, support groups and programs
for transplant patients, patient stories, and links to other information

Health care financing news, Information about the Medicare Program, etc.

HHS organ donation information
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
Contains excellent information on donation and transplantation, as well
as extensive answers to frequently asked questions about donation.
Life Connection of Ohio is dedicated to increasing and facilitating the
recovery of high quality organs and tissues for transplantation.

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 <>
  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
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).

This organization manages a drug cost share program for individuals who
cannot afford Sandimmune (cyclosporine).  See Part 3, section I.

National Transplant Assistance Fund
Formerly National Heart Assist and Transplant Fund
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

New England Organ Bank
One Gateway Center
Newton, MA 02158
Contact address:
Very nice on-line donor card available.
Information on donation and transplantation
      Organ and Tissue Donation
      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
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

Organ Transplant Association
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
Carl Hart <>:
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 or call (617) 482-5746.
      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)

Renalnet Home Page
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
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
Transplant National Resource Directory
Article Archives: These articles have been adapted from Stadtlanders' 

Surviving Transplantation
Dr. John Craven <>:
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 "
  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.

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
and suggestions and contributions can be sent to

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 
      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
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.)
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:

UCLA Transplantation
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.)

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
The site also has up-to-date transplant statistics, resources available,
and calls for public comment on policy changes.

World Children's Transplant Fund
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:

III. Organ donation and transplantation, frequently asked questions

contributed by Alex Bost,

*** 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

- 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 <newmanjd@UNOS.ORG>, UNOS Manager of Corporate

*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:

*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.

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.

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 -
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

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

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
and from The Partnership
for Organ Donation, Inc. (617)482-5746.

UNOS web site's Top Ten Myths About Donation

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

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  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
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
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,

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

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:
Policy Officer,

Debunking the Kidney Heist Hoax

The New Orleans Police Department has put their Official Statement
online at
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: 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

Update, May 1994 (also available from Todd Leventhal

Leventhal, Critique of French film "Organ Snatchers"

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,
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
After nearly two decades of work by many individuals the Postal Service has
finally seen fit to issue a stamp to raise donor awareness.

 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

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
	UNOS (see Part 2).
	Transplant Awareness Inc.
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
Email at

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