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1997-10-11
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Path: senator-bedfellow.mit.edu!faqserv
From: mike.holloway@stjude.org (Michael Holloway)
Newsgroups: bit.listserv.transplant,sci.med,sci.bio.misc,sci.answers,news.answers
Subject: FAQ: bit.listserv.transplant, Organ transplantation newsgroup (Part 1 of 4)
Supersedes: <medicine/transplant-faq/part1_873798426@rtfm.mit.edu>
Followup-To: bit.listserv.transplant
Date: 10 Oct 1997 09:24:30 GMT
Organization: none
Lines: 1275
Approved: news-answers-request@MIT.Edu
Expires: 23 Nov 1997 09:20:38 GMT
Message-ID: <medicine/transplant-faq/part1_876475238@rtfm.mit.edu>
Reply-To: mike.holloway@stjude.org (Michael Holloway)
NNTP-Posting-Host: penguin-lust.mit.edu
Summary: This is a description of the bit.listserv.transplant newsgroup
and its parent mail list, TRNSPLNT. Frequently asked
questions regarding organ transplantation are addressed.
A list of resources for transplantation patients is provided.
Pointers to other Internet transplantation resources are provided.
X-Last-Updated: 1997/10/08
Originator: faqserv@penguin-lust.MIT.EDU
Xref: senator-bedfellow.mit.edu bit.listserv.transplant:25076 sci.med:221639 sci.bio.misc:10061 sci.answers:7212 news.answers:114251
Archive-name: medicine/transplant-faq/part1
Part 1 of bit.listserv.transplant FAQ
Last updated 10/3/97
Modifications since 8/3/97
Updated Novartis Pharma (formerly Sandoz) Transplant Square Part1,
section II
Added Biliary Atresia & Liver Transplant Network weekly chat to Part 1, I.
Updated contact info for American Organ Transplant Association Part 3, section I.
Updated NORD cyclosporin/Sandoz drug assistance program, Part 3, section I.
Contents
Part 1:
I. Discussion forums
TRNSPLNT mail list - How to subscribe
DIALYSIS mail list - How to subscribe
Transplant patient IRC channel, and other chat sessions
Spouse/Caregiver mailbox
Australian Transplant and Dialysis discussion list
Second Wind discussion list
L-TX-S Caregivers discussion list
II. Organ and tissue transplant info via gopher and WWW
III. Organ donation and transplantation, frequently asked questions
IV. The organ donor shortage
V. Transplant and organ donation myths
VI. Organ donor awareness postage stamp campaign and other awareness
materials
Part 2:
I. Things your doctor may not have told you - Bits of advice for transplant
patients
Everyday stuff
Drinking water
Ibuprofen
Packing for the hospital
II. Sources of information on organ and tissue donation, transplantation,
and transplant centers
Patient support groups, services, books and videos
List of US lung transplant centers
Living-Related Liver Transplant Programs in the US
III. Non-US professional transplant organizations and patient support
groups
IV. Transplant fund raising
V. Live kidney donor information
VI. Renal transplant specific sources and information
VII. Bone marrow transplant specific sources
Bone marrow donation information
Part 3:
I. National Transplant Patient Resources Directory
II. Other Resources
a. Other companies offering pharmaceutical delivery services
b. Financial and travel assistance
c. Medicare drug cost coverage
d. Additional government programs of interest
e. Patient specific education, support, and products
Part 4: From TransWeb
I. Organ and Tissue Donation: A Gift of Life
What do I do if I want to donate?
Top 10 Misconceptions About Organ Donation
II. Ask TransWeb Questions and Answers
III. Frequently Asked Questions
IV. Organizations Promoting Donation
About this FAQ
--------------
This FAQ is archived at rtfm.mit.edu and available by anonymous ftp
under pub/usenet-by-group/bit.listserv.transplant. Its available by gopher
from any site with a link to the MIT ftp archive, such as
ccsun42.csie.nctu.edu.tw where faqs are listed under newsgroup hierarchy.
URL: http://www.lib.ox.ac.uk/internet/news/faq/bit.listserv.transplant.html
or
ftp://rtfm.mit.edu/pub/usenet/bit.listserv.transplant/
TransWeb (see section II) has a link to the FAQ through yet another
archive mirror. A gopher veronica search using "medicine/transplant-faq"
will also get you the current version.
The subjects treated in this FAQ are, for the most part, specific for the
state of organ and tissue transplantation in the United States. If
anyone would be interested in providing information that might be helpful
to people of other countries please let me know. If anyone has other
information they would like to have included in this FAQ please send it
along.
Many thanks to the people who have contributed information and otherwise
helped with the FAQ: Alex Bost, Dan Flasar, Kimberly Montgomery, Arthur
Flatau, Katherine Eberle, Anne Treffeisen, Rosalie Katchen, Joel Newman,
Gerald Huber, Ken Lifton, Dale Ester, Jim Warren, Jeff Punch, Fritz
Dolak, Julio Real, John Abbott, Marion Leska, Karen Couture, Lou
Bushfield, Lisa Carroccio, Kandy Darroch, and Luis Enrique Acero.
Mike Holloway
mike.holloway@stjude.org
=========================================================================
I. Description of the TRNSPLNT mail list and bit.listserv.transplant
=========================================================================
The Usenet newsgroup bit.listserv.transplant is a bi-directional echo of
the listserv mail list TRNSPLNT. If you have an interest in
transplantation, and think that the posted news and discussions are of
interest, it may be more convenient for you to subscribe. Be sure to
save the instruction file that is sent to you automatically when you
subscribe. To have a list of listserv commands sent to you, send mail to
LISTSERV@WUVMD.WUSTL.EDU and place either HELP or INFO REFCARD on the
first line of text. This list includes commands for unsubscribing,
setting your subscription to "nomail", and other useful commands. To
remove yourself from the list, send SIGNOFF TRNSPLNT.
All posts to TRNSPLNT or bit.listserv.transplant are archived by the
listserv system at Washington U. You can get an index of the
archive by following the directions below in Dan's introduction.
You can search the archive as a database and retrieve individual
articles via a keyword search by following the directions in the
file obtained by sending INFO DATABASE to LISTSERV@WUVMD.WUSTL.EDU
Below is the introduction to TRNSPLNT written by Dan Flasar. Since Dan
started the group early in `93 the posts have been on everything from
copies of news and information to recipes for low salt diets. It has
been a useful electronic support group for some participants who are
either waiting for a transplant, recovering from a transplant, or just
getting on with life after a transplant. We encourage recipients,
caregivers and medical professionals to introduce themselves to the
group. The list is also a tool for organ and tissue donor education.
-------------------------------------------------------------------------
TRNSPLNT on LISTSERV@WUVMD.WUSTL.EDU
TRNSPLNT is a discussion list for organ transplant recipients and
anyone else intested in the issues, experiences and realities of
living with an organ trasplant.
Over the last 30 years, the number of transplants performed each year
has grown steadily in both absolute numbers and type of organs
transplanted.
Though there are hospital, clinical and pharmaceutical
industry-sponsored newsletters, there are few, if any, completely
independent discussion forums for those who have experienced this
oftentimes dramaticaly effective therapy.
There are many life issues for the transplant patient that are simply
not covered in medical literature or by medical personnel. TRNSPLNT
will provide a way for members to share information on such things as
as travel, both domestic and abroad, how to deal with a compromised
immune system, stories about transplant experiences, and anything
that the members feel is worth discussing.
Archives of TRNSPLNT postings can be listed by sending an
INDEX TRNSPLNT
command to LISTSERV@WUVMD.WUSTL.EDU.
To subscribe, send the following command to LISTSERV@WUVMD.WUSTL.EDU
via email:
SUB TRNSPLNT Your Full Name
where "Your Full Name" is your name. For example:
SUB TRNSPLNT Billy Rubin
Owner: Dan Flasar SYSFLASAR@WUGCRC.WUSTL.EDU
A web page form is also available for subscribing at
http://www.cris.com/~holloway
NOTE: This is NOT a medical forum! Though advice may be offered, you
should, as with any medical issue, check with your physician before
you accept anything said in this forum as a basis for doing anything
that might affect your physical condition!
DIALYSIS
--------
(from Dale Ester dalee@enet.net)
The mailing list DIALYSIS has now been set up (as of 6/95). The email
address of the list is: dialysis@mail.wustl.edu
To subscribe to the list:
To do this, send mail to listproc@mail.wustl.edu with the message body of:
subscribe DIALYSIS <your full name>
e.g. subscribe DIALYSIS dale ester
Only subscribed users can post to the list. Any questions, please contact
aakpaz@enet.net
Internet Relay Chat (IRC), and service specific chats
-----------------------------------------------------
from Kandysfl@aol.com:
IRC chats are available for anyone with internet access.
The s/w is free and novijo@chesco.com (Joe Novitsky)
and geeo@ix.netcom.com (George W. Kern) are
available for anyone needing help. The new web address
http://www.geocities.com/HotSprings/9275/organtx.html
IRC Chat channel is "#organtx" on mirc.another.net"
port "6667,7000" and is open at 3:00 PM EST on
Thursdays Eurochat, and at 9:00 PM EST on
Thursdays for USA chat.
Prodigy Transplants/Pre Post chat is on Thursday, Friday,
and Saturday nights at 9 PM ET. They chose a topic for
each night, but all are welcome and all questions or needs
are discussed.
Weekly Chats on America Online
Mon 9 PM ET, Liver Dis & Tx, Mutual Support Room
Tue 10 PM ET, Private Room, Lung Transplant
Thu 7 PM ET, Heart Tx, Health Conf Room
Fri 9 PM ET, All Organs/Tissues Tx's IMH Conf Hall
From Lisa Carroccio <livers4kids@earthlink.net>:
The CHILDREN'S LIVER ALLIANCE (Biliary Atresia & Liver Transplant
Network) hosts our weekly on-line educational/support meetings for all
interested in pediatric liver disease and transplant.
PLACE: http://www.asf.org/txtalk.html NO SOFTWARE TO DOWNLOAD!!!
TIME: Thursdays, 10 P.M. Eastern Standard Time
NOTE TO ALL AMERICA ON-LINE USERS: YOU WILL NEED THE LATEST VERSION OF
AOL W/BROWSER TO PARTICIPATE.
To join the chat (after choosing a user name), just hit the "connect"
button. Let the page load completely. Be patient.
If you have any problems, please e-mail me at Livers4Kids@earthlink.net
or call 718-987-6200.
Spouse/Caregiver mailbox
------------------------
Note that this is not run on automatic list software so commands and
procedures used with the TRNSPLNT and Dialysis lists will not work.
From: Diane Lamb <spouse@crosslink.net>
I have created an additional mailbox here to begin to address the
creation of a Spouse/Caregiver mailbox. Until someone can get some space
out on the other public areas, I would be willing to forward all messges
to those who want it. Please feel free to have folks mail to the address
<spouse@crosslink.net>. If they want to be added to the mailing list
have them put subscribe Well Spouse in the subject line of the message.
I will forward messages at least 2x a day, and will attempt to keep an
archieve of all messages received. This forum is not intended to prevent
the person with the chronic illness from participating, but to give the
caregivers a place to vent, and talk freely among themselves if they need
to.
Australian Transplant and Dialysis discussion list
--------------------------------------------------
RALPH NEWMAN <rnewman@tpgi.com.au>:
Announcing the establishment of a new email listserver (actually
Majordomo - Ed.) in Australia, open to all, set up for both Transplant
and dialysis discussion. It is still a small group and we would welcome
your input. It can be found on the web, where there is an automatic
subscribe site, found at
http://www.wagga.net.au/transplant
Second Wind discussion list
---------------------------
(see Second Wind National Lung Transplant Patient's Association web site
in section II below)
Messages concerning lung diseases, lung transplants, problems, solutions, and
life in general.
Subscription form:
http://www.arthouse.com/secondwind/join.htm
L-TX-S@HOME.EASE.LSOFT.COM
--------------------------
From Evelyn Heering (ev48@aol.com):
This list is for the spouses, family members and
caregivers of lung transplant recipients and of those waiting for lung
tranpslants only. We are here to help each other cope with the waiting and
the post transplant times as well. To subscribe to this list send your
request to:
L-TX-S-request@home.ease.lsoft.com
Please include the diagnosis of your loved one, your relationship (spouse,
parent, sibling, etc.) and whether the person has been transplanted or is
waiting.
=========================================================================
II. Organ and tissue transplant info via gopher and WWW
=========================================================================
Gopher
------
(See also BMT gopher sites Part 2, section VII.)
Book: Death to Dust: Organ Donation by Iserson
----------------------------------------------
Host=gopher.mcw.edu
Port=72
Path=1/Bioethics Texts/Death to Dust: Organ Donation by Iserson
URL:
gopher://gopher.mcw.edu:72/11/Bioethics%20Texts/Death%20to%20Dust%3a%20Organ%20Donation%20by%20Iserson
Yale biomedical gohper
----------------------
gopher://info.med.yale.edu:70/11/Disciplines/Discipline/Transplant
Below is a copy of the menu contents for the Organ and tissue transplant
information directory as of August 5, 1995.
Bone Marrow Transplant Information (U. Penn. Med. School)
Gallup Poll on Attitudes Towards Organ Donation
HRSA organ transplantation fact sheet
Back issues of UNOS Update/ June 1993, July-August 1993, September-October
1993, July 1994, October 1994/
Legislative history of organ donation
Live kidney donor information
National Resource Directory for transplant patients (updated 3/94)
Organ trafficking myths/
1. Critique of French film "Organ Snatchers"
2. Organ trafficking myths
3. Report to UN on Child Organ Trafficking Rumor
4. UNOS paper on organ theft myths
Organ transplants increase; donation shows little change
Relevant articles from National Kidney Foundation Newsletter
Religious and cultural views on donation
Transplant ethics/
1. Evaluation of the ethics of presumed consent...
2. Financial incentives for organ donors
3. Preferred status for organ donors
Transplant fund raising (from BMT Newsletter, 11/93)
UNOS Brochures/
1. Questions a patient should ask
2. What every patient needs to know
Xenograft transplantation: "The Transplant Gap"
World Wide Web
--------------
American Liver Foundation disease information brochures
-------------------------------------------------------
http://www.gastro.com/liverpg/livdz.htm
American Share Foundation WWW page
----------------------------------
http://www.asf.org
maintainer: jsabbott@ix.netcom.com (JOHN S. ABBOTT)
Partial list of contents:
Kid's Space
1995 Transplant Desk Reference
Questions a Patient Should Ask
Answers to Commonly Asked Transplant Questions
What Every Patient Needs to Know about UNOS
Transplant Centers
OPOs - Organ Procurement Organizations
Support Groups
Support Groups, Newsgroups & Services
The American Society of Transplant Physicians
---------------------------------------------
http://www.astp.org/
ASTP is a multidisciplinary group of physicians and scientists dedicated
to the promotion of education and research relating to transplantation
medicine and immunology. News and abstracts of the journal
"Transplantation" available.
Biliary Atresia & Liver Transplant Network
------------------------------------------
http://www.asf.org/balt.html
(see Part 3, section IIe)
BODY British Organ Donor Society
--------------------------------
http://www.argonet.co.uk/body/index.html
This site covers topics on organ donation and transplantation, both in
the UK and Worldwide. Your requests for topics you would like to see
included are welcomed. Please send them to body@argonet.co.uk
The Delaware Transplant Program (DVTP)
--------------------------------------
http://clever.net/wwwmall/dvtp/index.html
The Delaware Valley Transplant Program is the non-profit organ tissue
donor program serving hospitals and patients in the eastern half of
Pennsylvania, southern New Jersey and the state of Delaware. Founded in
1974, DVTP is one of the federally designated organ procurement
organizations in the U.S. The program coordinates the recovery and
allocation of organs and tissues for transplant and is a part of the
nation's organ procurement and sharing network. DVTP is also the primary
source for donor cards in the region and conducts hundreds of community
and professional education programs each year.
Donor Network of Arizona
------------------------
http://www.donor-network.org/dnet/
We are located in downtown Phoenix, Arizona
3877 N. 7th Street, Suite #200
Phoenix, Arizona 85014
(602)222-2200
1-800-94-DONOR
-Organ Donation for Transplant and Research
-Donation of Bones and Tissues for Transplant and Research
-Eye Donation and Corneal Transplant
-Public Education (General Donation & Transplant Information)
-DNA'S Vital Link (A Quarterly Publication)
-DNA'S Legislative Update
The Friends' Health Connection
------------------------------
http://www.48friend.com
The Friends' Health Connection is a non-profit organization and the
premiere organization that provides customized, one-to-one support for
individuals and/or their families with health-related problems. We now
have a national toll-free phone line that you can call Monday through
Friday, 9:00 AM-5:00 PM to speak directly with a representative from our
organization. It is 1-800/48-FRIEND or 1-800/483-7436.
e-mail: fhc@pilot.njin.net
HCFA, The MEDICARE and MEDICAID Agency
--------------------------------------
http://www.hcfa.gov
Health care financing news, Information about the Medicare Program, etc.
London Health Sciences Centre Multi-Organ Transplant Program
------------------------------------------------------------
Has several informative articles on organ donation and transplant
information, with references.
http://www.lhsc.on.ca/transplant/index.htm
Missouri Kidney Program
-----------------------
Contact person: David Patterson <mokpdave@muccmail.missouri.edu>
http://www.missouri.edu:80/~mokpwww
The Missouri Kidney Program in Columbia Missouri (MoKP). We are
developing an End Stage Renal Disease (ESRD) and related issues web site
for patients, providers and others who are interested.
Currently our web site houses our most recent annual report detailing who
MoKP is as well as some statistics about patients in Missouri. We also
maintain to links to other related areas.
NATIONAL ORGANIZATION FOR RARE DISORDERS (NORD),INC.
----------------------------------------------------
http://www.pcnet.com/~orphan/
This organization manages a drug cost share program for individuals who
cannot afford Sandimmune (cyclosporine). See Part 3, section I.
National Transplant Assistance Fund
-----------------------------------
http://www.LibertyNet.org/~txFund
Formerly National Heart Assist and Transplant Fund
e-mail: txFund@LibertyNet.org
VOICE 800-642-8399 / Fax 610-527-5210
National Transplant Assistance Fund is dedicated to providing financial,
social and emotional support to transplant candidates. NTAF counsels patients
regarding location and cost of transplant centers and other possible sources
of financial assistance. NTAF helps the patients' families organize
fundraising in their communities while assuring fiscal accountability as
trustee. The organization is also deeply committed to educating the public
about the critical need for organ donation, lecturing community groups on
organ donor awareness and distributing free organ donor materials upon
request.
New England Organ Bank
----------------------
One Gateway Center
Newton, MA 02158
800/446-6362
Contact address: info@neob.com
http://www.ultranet.com/~neob/index.html
Very nice on-line donor card available.
Information on donation and transplantation
Organ and Tissue Donation
Transplantation
Attitudes toward organ and tissue donation
Deciding on organ and tissue donation
The Gift of Life!
Information on becoming and organ and tissue donor
Print a donor card to sign. Tell your family.
We will send you information. Just fill out this form.
Information for Donor Families and Recipients
NEOB Donor Family Services
Donor Family Quilt
Corresponding with donor families and recipients
Novartis Pharma (formerly Sandoz) Transplant Square
---------------------------------------------------------------------
http://www.magnet.ch/novartis/Tsquare/index.htm
Just as the town square used to be the central meeting place where people
exchanged information and ideas, the Transplant Square from Novartis Pharma
Ltd. is being offered on the Internet as a service to the wordwide transplant
community -- patients, healthcare professionals, support networks, and other
interested audiences. We are committed to advancing the science of transplant
medicine, and to providing you with up-to-date information in the field of
transplantation.
Organ Transplant Patient Home Page
----------------------------------
http://www.hooked.net/users/chartsf/txp/txphome.htm#chrono
Carl Hart <chartsf@hooked.net>:
There are numerous sites with transplant information; some pages are
dedicated to health care practitioners, others to patients and their
families. However, I found the information to be piecemeal, in no
logical order. I began to think back to my own experience with my
father's heart transplant: What information could I have used, and when
could have I used it? Thus, I recognized that one way to present this
information logically was to present it in a chronologically based Table
of Contents:
after the shock of the diagnosis and prognosis;
becoming informed about the procedure;
determining where the transplant may take place;
qualifying for the treatment (i.e., meeting the medical and
insurance/financial criteria);
entering the transplant program;
undergoing the transplant procedure; and,
complying with the aftercare instructions and addressing complications.
The Partnership for Organ Donation
----------------------------------
http://www.med.umich.edu:80/trans/transweb/partnership/index.html
The Partnership is an independent, non-profit organization dedicated to
saving and improving lives by closing the gap between the number of organ
transplants that are possible and the number of organ transplants that
actually occur.
If you would like more information about us and the work we are doing to
help solve the organ donor shortage, please contact us at
info@organ-donation.org or call (617) 482-5746.
Contents:
How the Partnership Fulfills Its Mission
Progress Notes: The Partnership's newsletter
Progress Notes Archive
Public education: A Different Kind of Love Letter and the Gallup Survey
A brief history of The Partnership for Organ Donation
A list of our Board members and Advisory Board members
Recent press releases
The Partnership's Bibliography
The Partnership for Organ Donation Scientific Abstracts (accepted)
Job opportunities (when available)
Sponsors
Renalnet Home Page
------------------
http://ns.gamewood.net//renalnet.html
Partial contents:
Dialysis Clinical Information
ESRD Program Financing
ESRD Providers
ESRD Vendors and Manufacturers
Government & Education Healthcare Resources
Nephrology Professional Organizations
Nephrology Research Presentations
Organ Transplantation
Featured General Healthcare Resources
Second Wind National Lung Transplant Patient's Association
-----------------------------------------------------
http://www.arthouse.com/secondwind/main.htm
A Network of General Information and Support For both pre and post lung
transplant patients and their families.
-Members Network E-Mail Address Listings
-Financing Transplantation
-Members Stories & Letters
-Information on Specific Lung Transplant Related Diseases
-Member profiles E-mail Addresses ,homepage links
-"AirWays" Newsletter
-Articles & Items of interest
-Nutrition Center
-Organ Donation Information
Stadtlanders' Pharmacy
----------------------
http://www.stadtlander.com
Transplant National Resource Directory
Article Archives: These articles have been adapted from Stadtlanders' magazine.
Surviving Transplantation
-------------------------
Dr. John Craven <jcraven@julian.uwo.ca>:
Surviving Transplantation is intended as a guide to coping for persons
undertaking major organ transplant. Any ideas contained within this book
should be considered in the context of your personal health
circumstances. As you will read in several places in Surviving
Transplantation, we recommend that you consult a physician or another
health professional before undertaking to make any changes in your
personal health care.
http://www.stjosephs.london.on.ca/SJHC/programs/mental/survive/st.htm
TransWeb
--------
TransWeb is a world wide web page for sharing information on organ
donation and transplantation. The page is continuously seeking
contributions of new material, as well as ideas for making it a more
useful forum for the transplantation community. TransWeb can be
found at
http://www.transweb.org
and suggestions and contributions can be sent to
transplant.webmaster@umich.edu
Partial list of contents:
Focus on Transplant Patients
Ask TransWeb
Frequently Asked Questions
Experiences with Transplantation and Donation
Transplant Medications
New Developments in Transplantation
Policy and Legislative Updates
Support, Advocacy, and Educational Groups & Resources
The Transplant Memorial
Reading List, Articles, Videos, etc.
Information for Medical Professionals
New Developments in Transplantation
Political/Legislative Updates
Ask TransWeb
Cybercongress: Transplantation in the Next Millennium
Congress on Xenotransplantation
UNOS's Calendar of Events
Organ and Tissue Donation: A Gift of Life
Test Your Knowledge of Organ Donation! The Donation Quiz
Frequently Asked Questions:
Top Ten Misconceptions about Donation
Can well-connected people like Mickey Mantle get transplants faster?
How many people need organs? See also thewaiting list statistics at UNOS.
Does my religion approve of donation?
What kinds of tissue can be donated?
What do I do if I want to donate?
Can I donate NOW?
Where can I register to be a bone marrow donor?
Articles About Donation:
The Tissue Shortage
From Oncolink: Measures to Safeguard Human Tissue Transplants
Experiences With Donation:
Feelings of a Living Kidney Donor
A bone marrow donor's experience
A special thank-you letter
"The Gift That Lives On"
Promoting Donation:
The Wendy Marx Foundation
The Transplant Memorial
Transplantation Resources on the Internet
(A comprehensive list of links for related sites on the net.)
Transplant News
----------------
http://www.trannews.com/
The only independent newsletter offering timely news on Organ, Tissue,
Eye and Bone Marrow Procurement and Transplantation. Find out how to
receive a FREE copy of the Transplant Video Journal.
UCLA Transplantation
--------------------
http://www.medctr.ucla.edu/dept/xplant/default.htm
So far available is a description and statistics of the Dumont-UCLA
Transplant Center. Other things under construction:
Abstracts not Currently under Copyright
A Moderated Newsgroup on Issues in Liver Transplantation
Static and Video Images of Procedures
Slide Show Presentations
University of Colorado's Organ Transplant Web Page
--------------------------------------------------
http://www.uchsc.edu/ctrsinst/organtx/
UNOS Transplantation Information Site
-------------------------------------
(See also section VII for more information on UNOS.)
http://www.ew3.att.net/unos
UNOS is a non-profit organization responsible for promoting,
facilitating, and scientifically advancing organ procurement and
transplantation throughout the United States while administering a
national organ allocation system based on scientific and medical factors
and practices.
Issues of the very informative news magazine UNOS Update have begun to be
posted.
The site also has up-to-date transplant statistics, resources available,
and calls for public comment on policy changes.
=========================================================================
III. Organ donation and transplantation, frequently asked questions
=========================================================================
contributed by Alex Bost, alex@unx.sas.com
*** Commonly Asked Questions About Being an Organ Donor:
- Where can I get an Organ Donor Card?
Many organizations, including the NKF and AAKP will provide donor
cards free of charge. Many physicians, pharmacies, and hospitals will
also provide them.
[Free cards and pamphlets also available from (800)24-DONOR]
- Should I mention being an Organ Donor in my Will?
No. Your will may be read too late to take your organs. However,
you should definitely mention Organ Donation in your Living Will.
- What is a Living Will?
A Living Will is a document where you stipulate what kind of medical
attention you will receive if you are unable to make decisions for
yourself. You may state your wish to become an organ donor in a Living
Will.
- Who pays for the medical costs of being a donor?
The transplant recipient is responsible for all costs involved in
organ procurement. The donor's family will not pay any of the cost.
- Does organ donation disrupt funeral arangements?
No. Organ donation will not disfigure the body. A donor may still
have an "open casket" funeral.
- Will becoming a donor mean a doctor will let me die?
Absolutely not! Medical personnel must follow very strict guidelines
before a donor can be pronounced dead. You can expect the same quality
of health care as you would if you weren't a donor.
------------------------------------------------------------------------
The following was written by Anne Treffeisen of the Long Island Chapter
of TRIO (Transplant Recipients International Organization)
(516-421-3258). The week of April 21-27 is National Organ
and Tissue Donor Awareness Week (NOTDAW). She asks that pastors or
rabbis include mention of the gift of life in their sermon or bulletin
during this week and provides this message as a guide.
ORGAN DONATION AND TRANSPLANTATION FACT SHEET
The donation of organs is a unique opportunity to save lives. It is
possible for the organs, tissues, and corneas of a single donor to save
or help as many as 25 people.
Transplantation works. As of 1993, over 160 thousand people have been
transplanted, and the majority are living full productive lives more than
five years after surgery.
Over 28,000 people in the United States, many of them children under 10
years of age, are currently waiting for transplants, and someone is added
to the waiting list every 30 minutes. Many will die waiting.
All potential recipients are listed on the United Network for Organ
Sharing, UNOS, computer. Organs are assigned as they become available
considering the severity of a patient's condition, medical requirements
(such as blood type, size, and tissue match), proximity to the available
organ, and time on the waiting list.
More organ donors are needed. Only about 20% of the potential donors
actually have their organs donated.
Organ donors are healthy people who have died suddenly, usually through
accident or head injury. They are brain dead. The organs are kept alive
through mechanical means.
No one involved with the life saving care of an individual is involved in
the transplantation or organ recovery process. No one on the transplant
team has any role in the diagnosis, treatment or declaration of death of
a patient.
Organs for transplant must be made available soon after death. Organ
removal will not take place without the permission of the next of kin.
Therefore, the decision to donate should have been discussed earlier and
the next of kin should understand and be prepared to carry out their
loved one's wishes. This is the heart of DONOR AWARENESS.
There is no cost or payment to the donor family or estate. All normal
funeral arrangements are possible.
All religious groups approve of organ and tissue donation as charitable
acts toward one's fellow human beings.
Organ donation is a true gift. In general, the donor family will never
know the recipient. They do know that out of their tragic loss, they
have given others life and health.
Questions frequently asked by transplant patients:
--------------------------------------------------
(see also UNOS pamphlets in Yale biomed gopher, information in TransWeb,
American Share Foundation WWW site, section II)
Contributed by Joel Newman <newmanjd@UNOS.ORG>, UNOS Manager of Corporate
Communications
*What's my position on the list?
Candidates and donors are matched by data, not rank. The only thing
you could be "ranked" by, in theory, is your waiting time. You could
be #1 on your local list by waiting time, having waited longer than
everyone else. However, if you're blood type B and a type A organ
comes along, you'd automatically be excluded. The same is true for
organ size, tissue match, etc. Given that all donors and all
candidates differ in some respects, you could be 20th on the list for
one offer, 3rd for the next, then 57th, then 1st.
Even if you're at the "top of the list," you may not get the organ.
Perhaps you have a complication that would preclude getting a
transplant for a few days or weeks. Maybe in reviewing the lab work
or donor history the transplant team has cause to defer the offer.
Perhaps, if you're highly sensitized, the initial crossmatch is OK but
the final crossmatch comes back bad. There are lots of scenarios.
Any refusals and the explanations would be submitted to UNOS.
Organs other than kidneys are most often transplanted into one of the
first 10 candidates identified on the match run. For kidneys that
rate is much lower, particularly because of highly sensitized patients
with adverse crossmatches.
With specific, written permission from the patient and from the
listing center, UNOS can provide the basic information on patient
listing (date of entry, current medical status, etc.). But I'd *beg*
you to call the center first on this if you have any questions! And
again, for all the reasons above, this would be meaningless as an
expression of your "rank" for a transplant.
For more detail:
http://www.med.umich.edu:80/trans/transweb/faq/faq_pos_list.html
*Where is the best transplant center?
We (UNOS) maintain(s) data on center-specific graft and patient
survival. The current report covers all transplants occurring between
10/1/87 and 12/31/91. You can request data free on up to 10 transplant
programs; after that we recommend you purchase either the set of data or
the specific volume you need. I believe the entire report is also
available via ftp on some obscure HCFA site; even I don't know the
address. (I'd warn you, though -- it's a huge report.)
That report will tell you quite a bit, but there's a lot it can't. There
are some risk factors we're unable to quantify at this point but might
affect outcome. There is also pure chance, which we can never completely
eliminate. For example, a recipient with a perfectly functioning
transplant who gets run over by a truck is still counted as a death,
graft-related or not.
The numbers can never tell you the whole story, either. I think any
surgeon or physician would tell you that the patient's outlook and
attitude have a great effect on outcome. If you really like (or
really hate) the care you're getting, the numbers have less meaning.
I'd advise you to look at the numbers, get some recommendations from
people in similar need, and then talk to the people at the program(s).
==========================================================================
IV. The organ donor shortage
==========================================================================
UNOS statistics reveal that in 1993, on average, 8 people a day died in
the US while on the waiting list. As organ transplantation has passed
out of the experimental stage, the number of people with end stage
diseases seeking a transplant has slowly but steadily increased. The
number of donations however, has not increased. Sadly, this is not
because there are not more potential donors. Various estimates are that
anywhere from 60 to 70% of potential donations are either refused by the
next-of-kin or are never requested. These estimates take into account
the criteria for brain-dead, heart-beating donors and other
contraindications. Roughly half of the missed donations appear to result
from failure of physicians to either declare brain death in a timely
manner, or their failure to notify their Organ Procurement Organization
of potential donors. This is despite enactment in all 50 states of
"required request" legislation that mandates that all potential donations
be sought. Apparently, there is no enforcement of these laws.
There are a variety of proposals to increase the number of
donations. For example: public and professional education, giving
people who have registered their support for donation additional
points on the waiting list should they ever need a transplant
themselves (preferred status), changing the structure of donation
from a required opting-in to a required opting-out strategy
(presumed consent), and requiring all adults to register their
choice of whether they would permit donation in the event of their
death (mandated choice or required response).
There are also, on occasion, issues raised in the media that might
be of interest to medical ethicists, but which would have little to
no positive impact on the number of organs available for
transplantation. Organ donation from anencephalic infants and
executed convicts, for example, are issues that could possibly
distract attention from the more important issue of obtaining wide
spread support for donation.
In the 1994 September 14th issue of JAMA, the AMA has finally (after
nearly a year of delay after the policy's adoption) made public its
recommendation that states enact into law a mandated choice policy.
The length of time it has taken to make this policy public indicates
the medical community's inability to appreciate that this is a
crisis situation for those patients on the waiting list whose lives
could potentially be saved. It also indicates that there are
individuals who do recognize the seriousness of the situation and
are working to move their colleagues toward a feasible solution.
References:
Siminoff LA, Arnold RM, Caplan AL, Virnig BA, Seltzer DL
Public Policy Governing Organ and Tissue Procurement in the United
States, Results from the National Organ and Tissue Procurement Study
Ann. Intern. Med. 1995 July 1;123:10-17
Note: Some of the conclusions in this study are at odds with those of
studies conducted by The Partnership for Organ Donation.
Council on Ethical and Judicial Affairs, American Medical Association
Strategies for Cadaveric Organ Procurement.
JAMA 1994 Sept.14;272(10):809-12
Murray TH, Youngner SJ
Organ Salvage Policies, A Need for Better Data and More Insightful
Ethics. (editorial)
JAMA 1994 Sept.14;272(10):814-5
Wolf JS
The role of the United Network for Organ Sharing and designated
organ procurement organizations in organ retrieval for transplantation.
Arch Pathol Lab Med 1991 Mar;115(3):246-9
Prottas J Batten HL
Health professionals and hospital administrators in organ
procurement: attitudes, reservations, and their resolutions.
Am J Public Health 1988 Jun;78(6):642-5
Annas GJ
The paradoxes of organ transplantation [editorial]
Am J Public Health 1988 Jun;78(6):621-2
Evans RW Orians CE Ascher NL
The potential supply of organ donors. An assessment of the efficacy
of organ procurement efforts in the United States.
JAMA 1992 Jan 8;267(2):239-46
Spital A
Mandated choice. The preferred solution to the organ shortage?
Arch Intern Med 1992 Dec;152(12):2421-4
Mandated Choice for Organ Donation: Time To Give It a Try
MD Annals of Internal Medicine, 1 July 1996. 125:66-69.
http://www.acponline.org/journals/annals/01jul96/inbalan1.htm
Gnant, M.R.X., et al.,
The impact of the presumed consent law and a decentralized organ
procurement system on organ donation: quadruplication in the number
of organ donors. (1991) Transplantation Proceedings, 23(5):2685-2686.
Michielson, P.
Organ shortage-What to do? [Presumed consent in Belgium] (1992)
Transplantation Proceedings, 24(6):2391-2392.
Kott, Andrea., Organ Procurement Programs in State of Emergency.
Medical World News Feb 1992, v33n2, p. 15-16
Lee, P.P., Kissner, P., Organ donation and the Uniform Anatomical
Gift Act. (1986) Surgery 100:867-875.
"Solving the Organ Donor Shortage", The Partnership for Organ Donation,
Inc. (617)482-5746.
UNOS Ethics Committee Reports on alternatives for organ donation:
"Financial Incentives for Organ Donation"
"Preferred Status for Organ Donors"
"An Evaluation of the Ethics of Presumed Consent and a Proposal Based on
Required Response"
- available from UNOS (804)330-8500
- also available through the Yale biomedical gopher (see section II)
Gallup Poll on Attitudes Towards Organ Donation, available in the Yale
biomedical gopher and Transweb (see section II), and from The Partnership
for Organ Donation, Inc. (617)482-5746.
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V. Transplant and organ donation myths
==========================================================================
As with any new technology, rumors, myths and misunderstandings about
organ transplantation are widespread. Frustration produced by the high
cost, the effect of the organ donor shortage, and the unavailability of
transplantation throughout most of the rest of the world have probably
contributed to this. Since rumors can often be more entertaining than
the truth, tabloid media will often pick up and help spread them, despite
the great harm they cause. Urban legends about organ transplantation are
uniquely dangerous since organ transplantation can not succeed without
the participation and support of the majority of the population. Bad
press, urban legends, even fiction portraying organ transplantation as
somehow evil, all have prevented full support for donation and led to the
death of people who might otherwise be leading productive and happy lives
now.
Another factor fueling the proliferation of myths is the unfortunate
institution in India of payment for unrelated live kidney donation that
preys on the poor in that country. While it may be true that the Indian
medical community is not required to abide by western standards of
ethics, neither is the US medical community required to interact with
them, train their physicians, publish their research, etc. Its past time
that the US medical community started taking visible responsibility for
influencing transplantation ethics in foreign countries.
Mani, M.K., Renal Transplantation in India. (1992) Transplantation
Proceedings, 24:1828-9.
Kott, Andrea., Organ Procurement Programs in State of Emergency.
Medical World News Feb 1992, v33n2, p. 15-16
Gallup Poll on Attitudes Towards Organ Donation, available at
http://www.med.umich.edu:80/trans/transweb/gallup_survey/gallup_index.html
and from The Partnership
for Organ Donation, Inc. (617)482-5746.
The "rising from brain death" myth
----------------------------------
One of the requirements for solid organ donation from cadavers is
that blood remain circulating for a number of hours. This requires
a patient that has been declared brain dead, total loss of brain
stem function, but whose heart can be kept beating. Unfortunately,
the media, and even, apparently, some medical professionals, are in
the habit of using the term "brain dead" to describe other
conditions that are properly referred to as vegetative state and
coma. A patient can recover, to one degree or another, from a
vegetative state or a coma. As a result, when next of kin are
approached with a request for organ donation after being told that
the patient is brain dead they often mistakenly believe that the
patient might recover and insist on waiting till the heart has
stopped beating and the patient is no longer a candidate for
donation.
Myths are widely circulated of patients declared brain dead who
recover just as they are about to be used for organ donation. This
has never happened. Inaccurate use of terms has probably
contributed to myths of resurrection from brain death, but the
linkage to organ donation is simply malicious.
The Partnership for Organ Donation (see section II and Part 2, section
II), a nonprofit organization active in altering the way donation
requests are made, is urging professionals to avoid the use of the term
"brain death" when discussing the declaration of death with the family
since its unrealistic to expect that the term can be explained to them,
and misinformation corrected, while they are grieving.
Freeman JW
Confusion and misunderstanding of some of the terms and practices
readily employed in medicine [editorial]
S D J Med 1991 May;44(5):123
Pallis C
ABC of brain stem death. The position in the USA and elsewhere.
Br Med J (Clin Res Ed) 1983 Jan 15;286(6360):209-10
Young B Blume W Lynch A
Brain death and the persistent vegetative state: similarities and
contrasts.
Can J Neurol Sci 1989 Nov;16(4):388-93
Oboler SK
Brain death and persistent vegetative states.
Clin Geriatr Med 1986 Aug;2(3):547-76
The black market myth:
----------------------
In all the time that the rumors of a black market, kidnapping and
murder of children, organ-swiping, and other atrocities have been
circulating (since at least 1982 when cyclosporin began to be widely
used), there has never been any evidence to substantiate any of
them.
Any rumor regarding a black market in organs, or organ piracy, needs
to be evaluated in light of the necessity of matching the organ and
recipient in order to avoid rejection by the recipient's immune
system. One can not take any old organ and just put it anywhere
you please. A rather complex system has been set up in the US to
handle matching and distribution. Its unlikely that any number of
evil people in the US or abroad will be able to duplicate such a
system in secret. Adding these simple facts with the necessity of
having many highly skilled medical professionals involved, along
with modern medical facilities and support, makes it plain why
rumors of the involvement of murder, violence and organized crime in
organ procurement can not be given any credence.
These stories have done great damage to the public's appreciation of
the need for organ donation.
Within the last several years, human rights organizations have
started to pick up and spread black market myths. They seem to have
confused unethical practices abroad which have been known and
protested for years (India's payment system for live kidney donation
and China's use of organs from executed convicts) with implausible
stories of secret organ swiping mafias. Their reliance on
ill-informed sources of information has damaged appreciation for
real human rights and ethics problems related to transplantation in
Asia and developing countries.
For reference see:
"THE CHILD ORGAN TRAFFICKING RUMOR: A MODERN `URBAN LEGEND'"
A REPORT SUBMITTED TO THE UNITED NATIONS SPECIAL RAPPORTEUR ON THE
SALE OF CHILDREN, CHILD PROSTITUTION, AND CHILD PORNOGRAPHY BY THE
UNITED STATES INFORMATION AGENCY, by Todd Leventhal, USIA Senior
Policy Officer,
and "UNOS paper on organ theft myths", both available through the Yale
biomedical gopher (see section II) and
http://www.usis.usemb.se/topics/bp-unrep.txt
The New Orleans Police Department has put their Official Statement
online at
http://www.mardigrasday.com/police.html
regarding the persistant urban legend of kidney snatching.
The Latin American baby snatching myth
--------------------------------------
These myths have been traced back to at least 1986 when Pravda in
the Soviet Union carried allegations of children being taken to the
US for adoption and then being murdered for their organs. There are
several variations and they've become quite popular in countries
where the civil unrest they foster tends to favor one political or
military faction. As described above, all of them require an
ignorance of what's involved in transplantation. No evidence is
ever produced, just the assertion that its being investigated.
Within the last few years some individuals concerned about human
rights violations in Latin-America have become infatuated with these
rumors, apparently because one Central-American government official
or another had told them that they were true, though again no
evidence is produced. This is very unfortunate since Amnesty
International has started to quote some of the more irresponsible
writings on the subject.
Further information is available from Todd Leventhal at the US
Information Agency. E-mail: tleventh@usia.gov Phone: (202)619-5673.
Fax: (202)205-0655.
They've been following the body parts rumors for seven years.
References and additional information:
Too Good to Check, Anti-Americanism: A rise in suspect reports that
children are being abducted or their organs. Newsweek, June 26, 1995,
pg. 33.
Leventhal, THE "BABY PARTS" MYTH: THE ANATOMY OF A RUMOR. UNOS
Update, May 1994 (also available from Todd Leventhal
tleventh@usia.gov and the Yale biomedical gopher)
Pierce, Burdick face accusers in baby parts allegations, UNOS Update,
June 1993 (available at the Yale biomedical gopher)
UNOS Fights 'Baby Parts' Rumor in Geneva. UNOS Update, May 1994
Organ Trafficing perspective from UNOS, UNOS press release available
from UNOS and also posted at the Yale biomedical gopher site.
Foreigners Attacked in Guatemala. New York Times, 4/5/94, pg. A10.
Holden, Constance. Curbing Soviet Disinformation. Science, Nov
4, 1988, v242, p. 665.
The racism myth:
----------------
The chance of getting a good organ or tissue match is more likely within
an ethnic group. Since minorities in the US have traditionally been less
likely to participate in organ and tissue donation, the chances of a
patient from one of these groups finding a match is decreased. The urban
legend, of course, is that organ distribution discriminates by race and,
therefore, donation should be refused since it will punish the
oppressors. The tragic reality is that the people they are hurting the
most by doing this are the people within their own ethnic group.
References:
Kallich JD. Wyant T. Krushat M., The effect of DR antigens, race,
sex, and peak PRA on estimated median waiting time for a first cadaver
kidney transplant. Clinical Transplants. :311-8, 1990.
Pike RE. Kahn D. Jacobson JE., Demographic factors influencing
consent for cadaver organ donation. South African Medical Journal.
79(5):264-7, 1991 Mar 2.
Arnason WB., Thomas Jefferson Memorial Church, Unitarian Universalist,
Charlottesville, Va. Directed donation. The relevance of race.
Hastings Center Report. 21(6):13-9, 1991 Nov-Dec.
Plawecki HM. Plawecki JA., Improving organ donation rates in the black
community. Journal of Holistic Nursing. 10(1):34-46, 1992 Mar.
Mozes, Hayes, Tang
Impediments to Successful Organ Procurement in the "Required Request"
Era: An Urban Center Experience
Transplantation Proceedings 1991 October; 23(5):2545
The preferential treatment on the US waiting list myth
------------------------------------------------------
Since patients are not listed by name in the regional and national lists,
its hard to imagine how this is supposed to take place.
It is likely that people taken in by this myth are having a hard time
distinguishing preferential treatment on the list (which doesn't exist)
with the problems of simple access to health care in general. This is a
problem with the entire US health care system and has nothing to do with
how patients are treated once they are on the transplant waiting list.
==========================================================================
VI. Organ donor awareness postage stamp campaign
and other awareness materials
==========================================================================
A petition is being circulated for a postage stamp to promote
organ donor awareness. A similar stamp promoting blood
donation had a large impact on increasing blood donation.
Copies of the petition are available from the address below but
any sheet of paper with names and addresses will do.
from Karen Couture <kcouture@gate.net>(December `95):
Southwestern Michigan/TRIO have been collecting signatures for a proposed
stamp honoring organ and tissue donation. On Oct. 3, 1995 284,242 signatures
in support of the stamp were shipped to the Citizens Stamp Advisory Committee
in Washington, DC. Currently the stamp remains under consideration. They are
currently working on stamp porgrams for 1998 and beyond. In the past SW
Michigan has been advised that they need to show national interest. They have
signatures from all 50 states, the District of Columbia and a total of 25
countries. As of Nov. 13 they have 285,795 signatures. And are continuing to
accept and count signatures.
The person to contact for info. and sheets to collect signatures is....
Gary Rouse
President/Organ Transplants of Southwestern Michigan/TRIO
PO Box 8786
Benton Harbor, MI 49023
616-423-6450
From Ken Lifton (January 1995):
Over 250,000 signatures have been collected in the organ donation postage
stamp campaign around the country and forwarded to the Citizen's Stamp
Advisory Committee (I believe). I am sad to report that the man who started
the effort, Ed Heyn (kidney recipient), died last month.
The support group he founded (Organ Transplants of Southwest Michigan -- now
a TRIO Chapter) has vowed to carry on the work of Ed's dream of the stamp.
Many persons and groups around the country have been collecting signatures.
Unfortunately up until now the Citizen's Stamp Advisory Committee, I believe
considers the Stamp "controversal". Lets all redouble our efforts and write
to the address (below).
"The address people can write to, in favor of an Organ Donation Stamp is:
Citizen's Stamp Advisory Committee
c/o Stamp Management
U.S. Postal Service
475 L'Enfant Plaza, SW Room 4474E
Washington, DC 20260-2437
Sources of the "Don't take your organs to heaven. Heaven knows we need
them here" bumper stickers and other materials:
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The Aurora Group in Arkansas: 501-2-CHANCE.
The New York Regional Transplant Organization: 212-870-2240 and
212-861-7370
UNOS (see Part 2).