FAQ: bit.listserv.transplant, Organ transplantation newsgroup (Part 2 of 4)
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 2 of 4)
Supersedes: <medicine/transplant-faq/part2_868440420@rtfm.mit.edu>
Followup-To: bit.listserv.transplant
Date: 9 Aug 1997 12:02:32 GMT
Organization: none
Expires: 22 Sep 1997 11:59:10 GMT
Message-ID: <medicine/transplant-faq/part2_871127950@rtfm.mit.edu>
Reply-To: mike.holloway@stjude.org (Michael Holloway)
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: 1997/05/04
Archive-name: medicine/transplant-faq/part2
Part 2 of bit.listserv.transplant FAQ
Last updated 4/30/96
Updated LRLT program list, Part 2, section II.
Part 2:
I. Things your doctor may not have told you - Bits of advice for transplant
patients
Everyday stuff
Drinking water
Ibuprofen
Packing for the hospital
II. Sources of information on organ and tissue donation, transplantation,
and transplant centers
Patient support groups, services, books and videos
List of US lung transplant centers
Living-Related Liver Transplant Programs in the US
III. Non-US professional transplant organizations and patient support
groups
IV. Transplant fund raising
V. Live kidney donor information
VI. Renal transplant specific sources and information
VII. Bone marrow transplant specific sources
Bone marrow donation information
==========================================================================
I. THINGS YOUR DOCTOR DIDN'T TELL YOU
==========================================================================
(contributed by Alex Bost alex@unx.sas.com)
Everyday Stuff:
Buy a Medic-Alert (or some other brand) medical jewelry. Carry a
card in your wallet that says you are a transplant recipient and
list all your daily meds, as well as any drug allergies.
(see Part 3, section IIe.)
Stay out of the Sun/Use a Sunscreen!
Many of the immunosupressive drugs will make you vulnerable to
sunburn and increase your risk of skin cancer. Cover up, user
a sunscreen of at least SPF30 and stay out of the sun.
Buy Anti-bacterial Soap and put it everywhere: the kitchen, the
bathrooms, the garage. Wash your hands often. That goes for family
members, too. Buy a pack of Anti-bacterial wipes and keep them
handy for when you are out of the house.
Replace your household cleaning products (409, PineSol) with a brand
(LySol) that disinfects as well as cleans.
Eating Out:
- Stay away from Salad Bars and Buffet Tables
- Order well-cooked meats
- Never, ever order an egg -- unless it is cooked solid
- Never, EVER order raw seafood
- Wash your hands before eating anything
- If you suspect germs, ask your food preparer or server
to wash their hands
Pets:
- Dogs, in general, are ok. Stay away from the feces.
- Use caution with cats and litter boxes; cat feces can carry
toxoplasmosis.
- Birds carry many parasites and bacteria. Use caution (lung
tx -- stay away!).
- Hamsters, Gerbils, Rats, and Mice bites can affect your resistance
to some immunosupressive drugs (like OKT3). Stay away from them.
Travel Tips:
- NEVER pack your meds - keep them with you at all times. It's a
good idea to pack some extras.
- Carry a copy of your medical history, doctors names, and
prescriptions wth you.
- When flying, take along a mask in case someone seated close to
you has a cold.
- Carry bottled water and keep yourself hydrated.
--
Alexandra Bost
UNIX SysAdmin, SAS Institute email: alex@unx.sas.com
June `95 drinking water advisory
--------------------------------
from Ken Lifton <KenL240787@AOL.COM>:
Transplant Recipients International Organization
1735 I Street NW, Suite 917
Washington, DC 20006-2461
800-TRIO-386
DATE: June 16, 1995
TO: Chapter Presidents and Chapters In Formation
FROM: Lisa R. Kory, Executive Director
Subject: CDC Press Advisory - "Drinking Water Guidance for People
with Weakened Immune Systems"
Enclosed, please find a Centers for Disease Control (CDC) Press Advisory
regarding the presence of Cyptosporidium (a parasite) in drinking water and
its harmful potential for those with weakened immune systems (transplant
recipients, HIV/AIDS infected and cancer patients).
The CDC recommends consulting you doctor to assess individual vulnerability
to the parasite. If you are at risk, the most effective method of
neutralizing cryptosporidium is to bring your water to a rolling boil for at
least one minute. Drinking bottled water that is distilled, has gone through
a process of reverse osmosis, or comes from a deep well or protected spring,
are good alternatives. For further information on bottled water call the
International Bottled Water Association's Hotline at 800-WATER-11. Tap water
taken from lakes or rivers is more likely to be contaminated.
Please contact our office for further information about in-home, National
Sanitation Foundation (NSF) approved, point of use (personal use, end of tap,
under sink) water filtration systems, or call NSF directly at 800-NSF-8010.
If you have further concerns about cryptosporidium in tap water you can call
CDC's National AIDS Hotline (1-800-342-AIDS) or your local water utility.
Drug interactions
-----------------
Subject: Re: ibuprofen
From: Jeff Punch <jpunch@umich.edu>
Ibuprofen IS often a problem for patients on cyclosporine. The reason
for this is because cyclosporine causes a constrictive effect on the small
blood vessels in the kidneys. Normally the kidney responds by
"autoregulation" which compensates for the cyclosporine effects. Ibuprofen
can inhibit this autoregulation making the kidney more vulnerable to the
toxic effects of cyclosporine. This can markedly reduce kidney function,
and even result in kidney failure. Therefore, patients on cyclosporine
need to be exceedingly careful about taking ibuprofen. Ibuprofen is
available over the counter in many many different drugs including sinus
medications and cold remedies.
Furthermore, the entire class of drugs that ibuprofen belongs to can
cause this problem. They are called NSAID for "non-steroidal
anti-inflammatory drugs". Other members of this class include Naprosyn
(recently approved for over the counter), indocin, clinoril, and many
others. The effect that the combination of cyclo plus NSAID has on the
kidney is variable: not everyone gets kidney failure. But, the fact that
the two can combine to cause a real problem means that transplant
patients on cyclosporine need to be extremely careful about any taking
over the counter medications.
Packing for hospital
--------------------
(compiled by Luis Enrique Acero <lacero@impsat.net.co> from TRNSPLNT
posts)
- Before you pack
A list of what to do at home to ready it for your absence.
Make sure your beeper it's working
- What to pack
Slippers, socks, a robe (must have)
Loose clothes
Eye mask, ear plugs (being able to sleep any time)
Personal care => toothbrush, hairbrush, ...
Personal pillow (if any preferences)
glasses, rigid case to put them
Notebook, pens (take notes of medicines, remember questions)
List of people who you want to notify addresses/phone numbers (stamps)
Long distance calling card
Portable radio/tape/cd player with headphones (extra batteries)
Laptop, computer (internet access, games)
Books, magazines, crosswords
Camera (to remember people)
Personal items to make you feel better => photographs, bible, ....
Candy (for nurses)
Money => quarters, cash
==========================================================================
II. Sources of information on organ and tissue donation, transplantation,
and transplant centers
Patient support groups, services, and media
List of US lung transplant center waiting times
==========================================================================
UNOS
----
(See also Part 1, section II for UNOS WWW page.)
From UNOS quick info sheet:
------------------------------------------------
The United Network of Organ Sharing, located in Richmond, Virginia,
administers the National Organ Procurement and Transplantation Network
(OPTN) and the U.S. Scientific Registry for Organ Transplantation
under contracts with the US Department of Health and Human
Services. UNOS is responsible for promoting, facilitating and
scientifically advancing organ procurement and transplantation
throughout the United States while administering a national organ
allocation system based on scientific and medical factors and
practices.
UNOS members include every transplant program, organ procurement
organization and tissue typing laboratory in the United States.
Policies governing the transplant community are developed by the
UNOS membership through a series of regional meetings, deliberations
at the national committee level and final approval by a 32 member
board of directors, equally represented by physicians and
nonphysicians.
UNOS has formulated policies to ensure equitable organ allocation to
patients registered on the national waiting list. These policies
forbid favoritism based upon political influence, race, sex of
financial status; they rely, instead, upon medical and scientific
criteria.
------------------------------------------------
Back issues of "UNOS Update", the UNOS Ethics Committee whitepaper
reports on alternative organ donation and tables of recent UNOS
statistics on organ transplantation, are available through the Yale
biomedical gopher (see Part 1, section II).
The UNOS 800 number for organ donation information, pamphlets, organ
donor cards, bumper stickers, etc., is: 1-800-24-donor.
To request transplantation statistics, UNOS Update, or ethics
committee reports call (804) 330-8500. UNOS Update gratis
subscription requests can also be made by writing to Esther
Benenson, Managing Editor, UNOS Update, P.O. Box 13770, Richmond, VA
23225-8770. A list of educational material is also available. Some
of these require a fee.
You can also send a request for information or donor education
materials to NewmanJD@gwwpm1.unos.org.
From Joel Newman <NewmanJD@gwwpm1.unos.org> (5/24/96)
UNOS does have center-specific graft and patient survival
rates and can provide up to 10 programs' stats free of charge. For
better tracking and fulfillment, we ask that you send us a written request
(can be faxed or e-mailed). Please specify the programs for whom you
want data and give us a snail-mail address (there is a user's guide that
accompanies the data, and it's almost always too much to fax). The best
number to call for more info is the Communications Department at
804-330-8561. You can also fax requests to us at 804-330-8507, or
e-mail me and I'll pass it on. Please try to allow a week or so for us to
process and mail the info -- we're getting a lot of requests lately.
Coalition on Donation
---------------------
The Coalition on Donation is a nonprofit alliance of numerous
professional, patient, health, science, transplant and voluntary
organizations. Its purpose is to increase public awareness of organ and
tissue donation, correct misconceptions about donation, and create a
greater willingness to donate.
For brochures and education material call: 1 -800-355-SHARE
Coalition on Donation
1100 Boulders Parkway, Suite 500
P.O. Box 13770
Richmond, VA 23225-8770
FAX: 804-330-8593
The Partnership for Organ Donation, Inc.
----------------------------------------
http://www.med.umich.edu:80/trans/transweb/partnership
(see Part 1, section II)
From "Solving the Organ Donor Shortage":
"The Partnership for Organ Donation, Inc. is an independent
nonprofit organization dedicated to solving the desparate shortage
of organs available for transplantation in the United States.
"The Partnership believes the gap between eligible and actual
donors can be closed, and donation substantially increased, by
implementing an organized, proactive, and systematic program which
focuses on three key audiences: health car professionals, organ
procurement organizations, and the American public."
"Solving the Organ Donor Shortage" is a very concise and detailed
description of the shortage, the problems contributing to it, and
how the Partnership believes it can be combatted, complete with
bibliography. A copy can be obtained from:
The Partnership for Organ Donation
2 Oliver St. International Place
Boston, Massachuetts 02109
telephone:(617)482-5746.
info@organ-donation.org
The Wendy Marx Foundation for Organ Donor Awareness
---------------------------------------------------
Dedicated to educating people about organ donor awareness. It was
formed in 1990 after Wendy Marx received a liver transplant. The
Foundation has helped sponsor the U S Transplant Games; formed the U S
Sports Council on Organ Donation, which includes athletes, coaches, team
managers and sports media representatives; launched Dribblin' for Donors
on the collegiate basketball level; and has spread the word in many
presentations throughout the country to schools, corporations and the
press.
"Talk, Talk, Talk," is a video aimed at reaching junior high school students
and their families on the issue of organ donation. The eight-minute video
features Olympic champion Carl Lewis and liver transplant recipient Wendy
Marx. The video will have the most impact if a transplant recipient or donor
family member is able to accompany it in a classroom.
Wendy Marx can be reached at WEMarx@aol.com
The Foundation can be reached at 202/546-7270 or 322 S. Carolina Street, SE;
Washington DC 20003
Support groups (see Part 3 for organizations offering financial assistance)
---------------------------------------------------------------------------
A.C.O.R.N. (Atlantic Canada Organ Recipient Network)
----------------------------------------------------
from Oran Mosher <oran@ra.isisnet.com>
The group currently consists of people who are from across Atlantic
Canada. A.C.O.R.N. holds meetings every other month and produces a
Newsletter three times a year. The Newsletter is called ACORN News. The
Newsletter is used as a communication tool to keep it's members informed on
various topics. The group promotes organ donor awareness, peer volunteer support,
organizes social events and holds fundraisers to help with financial costs.
For more information about A.C.O.R.N. or to receive a personal copy
of ACORN News send your queries to any of the below addresses.
Mailing Address: A.C.O.R.N.
c/o V.G. Hospital
1278 Tower Rd.
Halifax, NS
B3H 2Y9 Canada
Voice Mail / Fax Machine: (902) 469-9769 - Voice
(902) 428-2042 - Fax
Biliary Atresia & Liver Transplant Network
------------------------------------------
Biliary Atresia & Liver Transplant Network Inc.
3835 Richmond Avenue, Box 190
Staten Island, NY 10312 USA
Telephone (718) 987-6200
Fax: (718) 987-6200
E-Mail: Livers4Kids@earthlink.net OR OrganTrans@msn.com
Web Site: http://www.asf.org/balt.html
Biliary Atresia & Liver Transplant Network
Dedicated to empowering the hearts and minds of children with liver disease,
their families and the medical professionals, BALT is the largest pediatric
liver foundation worldwide and publishers of The Biliary Tree newsletter. BALT
provides FREE educational information, support, and advocacy for all pediatric
liver diseases (PRE- AND POST-LIVER TRANSPLANT) including Alagille's Syndrome,
Alpha-1 Antitrypsin, Biliary Atresia, Byler's Syndrome, Galactosemina,
Gylcogen Storage Disease, Hepatitis, Tyrosinemia, Wilson's Disease and
pediatric liver transplantation.
WHAT BALT DOES
Baby Formula & Medical Supplies Network - This program has helped many
families throughout the U.S. to provide adequate nutrition for their children
with liver disease.
Parent Matching - This program brings parents in the network together, which
often results in establishing strong support systems and special friendships.
Support Team - The eight member team welcomes new families and provides
emotional support as these families start their journeys.
The Tree House Club - The Club allows children with liver disease, liver
transplant recipients and their siblings to share their feelings and cope with
their fears by linking up with each other through a pen-pal network.
The Children's Corner - The Corner gives our kids a special page in each issue
of The Biliary Tree where they can get creative. It's a chance for the kids
to share what's new and to tell their own stories.
BALT Library - The library holds information for all members on all areas of
pediatric liver disease, pediatric liver transplantation and organ donation.
And because the library is connected with a number of other organizations
worldwide, additional resources will continually become available to members.
The Twin Registry - In hopes of getting to the core of why certain diseases
occur in our infants, the registry continues to register twins and triplets
with liver disease.
Educational Seminars - In conjunction with other organizations, BALT conducts
educational seminars with the assistance of leading medical professionals .
On-Line Family Support Chats - Families with computer access can join BALT,
medical professionals and other families to discuss all aspects of pediatric
liver disease and transplantation. Schedules will be posted on our Web site.
Transplant Center Referrals - BALT acts as liaisons between families and
pediatric liver transplant centers. We provide information about specific
transplant centers, resources available in the area and support from other
BALT families located near the transplant center.
Medical Advisory Board - To ensure the highest quality of medical information
to our members, BALT has enlisted the assistance of the top medical
professionals in pediatric liver disease and transplantation.
Angels Above Us - Until a cure is found for liver disease and transplantation
has been perfected, Angels Above Us will continue to serve as the
organization's bereavement support group. This group lends support to those
who are suffering by linking them with others in the network who have also
lost children.
Coalition on Transplantation - BALT serves as Co-Directors and Founding
Trustees of the American Share Coalition on Transplantation (ASCOT). BALT,
along with the American Share Foundation, The Nicholas Green Foundation and
The World Children's Transplant Fund have together formed a coalition of
groups dedicated to disseminating educational information about
transplantation and promoting organ donation. ASCOT's web site
(http://www.asf.org) is the Official Web Site for The 1997 International
Transplant Congresses.
Children's Liver Association for Support Services (C.L.A.S.S.)
--------------------------------------------------------------
26444 Emerald Dove Drive
Valencia, CA 91355
(805) 255-0353
e-mail: SupportSrv@aol.com
C.L.A.S.S. is dedicated to addressing the emotional, educational and
financial needs of families with children afflicted with all types of
liver disease including:
biliary atresia, Alagille's syndrome, alpha-1-antitrypsin, tyrosinemia,
Wilson's disease, glycogen storage disease, Byler's syndrome,
galactosemia, hepatitis B,C,& D, neonatal hepatitis, cystic fibrosis, and
many others.
C.L.A.S.S. is an all-volunteer group comprised of parents, family members,
healthcare professionals and others interested in pediatric liver disease and
liver transplantation. The programs and services of C.L.A.S.S. include:
telephone hotline, parent matching, financial assistance, educational
literature, and much more. A free quarterly newsletter, "C.L.A.S.S. Notes"
describes past and upcoming activities of the organization, highlights
additional available resources, and features articles written by leading
liver specialists about various aspects of pediatric liver disease and liver
transplantation. C.L.A.S.S. is a qualified tax-exempt nonprofit organization
under the Internal Revenue Code as described in section 501(c)(3).
Diamond State Organ Donor Association
-------------------------------------
PO Box 471 800-464-4357
Dover, DE 19903
Main emphasis is on education and donor awareness. Delaware Motor Vehicle
Dept. recently began supporting a campaign for Donor cards and Green Dots on
driver's licenses. Meetings are held in both Seaford and Stanton, DE.
Donor Network of Arizona
------------------------
From Dale Ester <dalee@ENET.NET>:
DNA is an OPO and has a logo - "the vital link for organ, tissue,
and eye recovery. SHARE YOUR LIFE ...SHARE YOUR DECISION." DNA is
located at 3877 N 7th St # 200 Phoenix, AZ 85014 (602) 222-2202
1-800 94-DONOR . Jack Cremin is the Director. DNA has produced a
donor awareness educational video which is currently showing on
public TV. DNA has a Speaker's Bureau of organ recipients and donors
(approximately 25 individuals) who personally spread the word
(educate) others about the benefits of organ donation. I am on this
Bureau (for the past 3 1/2 years).
The same telephone number/address also gets in touch with Robert
Miller (Director) of the ARIZONA COALITION FOR ORGAN DONATION.
Liasons for Life Support Group
------------------------------
800-543-6391
c/o DE Valley Transplant Program
Newly reorganized umbrella organization to support and
encourage support groups in area served by DE Valley
Transplant Program. The DE Valley Transplant Program is the
regional procurement organization for Delaware and can be
reached at:
DE Valley Transplant Program 800-Kidney1
2000 Hamilton Street, Suite 201
Philadelphia, PA 19130-3813
SECOND CHANCE TRANSPLANT SUPPORT GROUP
--------------------------------------
1609 WINTERGREEN COURT
HUNTSVILLE,ALABAMA 35806
Second Chance, transplant support group is a support group for pre and post
transplant recipients and their families.
the purpose is to increase public awareness concerning the critical shortage
of donated organs. to help educate the public concerning fears and
misconceptions of being an organ donator.
to emotionally support transplAnt recipients,and their fanilies through each
hurdle and milestone after transplant surgery,to share ideas,concerns,and
educational materialrelated to improving the quality and appreciation of life
as an organ receipient,to help each other keep abreast of future developments
and research in transplantations.
Special News
------------
Ron Sewill <esanchez@csbsju.edu>
I started, along with some other parents who have been there, done that,
an informational and advocacy group for special needs kids of all kinds.
We also put out a free monthly snail mail newsletter targeted to our area
but applicable to most places describing what is available to make the
non-medical part a little easier:
Special News
PO Box 23
Sauk Rapids, MN 56379
1-800-471-0026
or e-mail me at: <esanchez@csbsju.edu> with name, address, and I
will add you to the confidential mailing list. Oh yes, we want to
know if you are a family or a professional caregiver.
TRIO
----
http://www.med.umich.edu/trans/transweb/support/trio_main.html
The Transplant Recipients International Organization is a
network of local support groups that meet for the benefit of members and
to promote organ donor awareness. Their national headquarters can put
you in touch with your local chapter: (800) TRIO-386, (202) 293-0980, fax
(202) 293-0973. They also have pamphlets and organ donor cards available.
Other
-----
Local transplant centers and OPOs
---------------------------------
Local Organ Procurement Organizations (OPOs) often have education and
promotion activities. A local transplantation center will be able to
give you information on this.
Books, Magazines, and Videos
----------------------------
(see also Wendy Marx Foundation above)
Encore: Another Chance at Life A slick magazine published by Chronimed
Pharmacy "exclusively for organ transplant patients, their families and
friends." Apparently published 4 times a year. "This publication
provides a broad look at many issues surrounding organ transplantation
and encourages personal stories and feedback from readers." For a four
issue subscription for $12.95 annually write to: Chronimed Publishing,
P.O. 46181, Minneapolis, MN, 55446-9920
"Transplant Success Stories"
Contains histories of recipients and donor families.
Edited by Paul I. Terasaki and Jane Schoenberg, 1993
Published by the UCLA Tissue Typing Laboratory
Order $5.00 a copy:
UCLA Tissue Typing Laboratory
950 Veteran Avenue
Los Angeles, CA 90024
Telephone: (310) 825-7651
FAX: (310) 206-3216
(from Marion Leska <MarionL@aol.com>)
"LIFE from DEATH, The Organ and Tissue Donation and Transplantation
Source Book with Forms"
The P. Gaines Co.
P.O. Box 2253, Oak Park, Illinois, 60303
The book has several sections. It has a detailed explanation of the Nat'l
Organ Transplant Act, and then has sections on 1.Donation of
organs,tissues,etc; Law and legislation, U.S. and States. 2. Transplant
of Organs,tissues,etc. Law and legislation, US and States., and 3. Dead
bodies (honest!!!) Law and legislation, US and states.
"Taking Heart" by A.C. Greene.
1990, Simon & Schuster.
A first person account by a heart transplantee.
From Fritz Dolak <00fjdolak@bsuvc.bsu.edu>:
Video: "Dying to Breathe" It can be
obtained for $19.95 from Nova: 1-800-628-5355. Though it contains a 1993
copyright, I believe it was filmed c. 1989. I may be wrong in this. My
transplant center made all lung transplant candidates view it.
Transplant Video Journal
------------------------
A half-hour video newsmagazine covering transplantation topics nationwide
is available FREE of charge by sending your name, address, etc. to
transvidjr@aol.com. Or you may fax request to (201) 515-3434. Transplant
Video Journal is produced by TransCom Media through an educational grant
from Sandoz Pharmaceuticals Corporation, East Hanover, NJ.
List of waiting times at some US lung transplant centers
--------------------------------------------------------
Waiting time estimates were given by a center employee on April 1995.
These are unofficial numbers, and may have changed. Waiting time should
not be the sole criteria for choosing a transplant center. A complete
list of lung transplant centers is available from UNOS:
(from Joel Newman <NewmanJD@gwwpm1.unos.org>)
Please specify the programs for whom you want data and give us a
snail-mail address (there is a user's guide that accompanies the data,
and it's almost always too much to fax). The best number to call for
more info is the Communications Department at 804-330-8561. You can also
fax requests to us at 804-330-8507, or e-mail me and I'll pass it on.
Please try to allow a week or so for us to process and mail the info --
we're getting a lot of requests lately.
Baylor College of Medicine
Houston, TX
(713)790-2076713)70
average wait 6 - 9 months
Barnes Hospital
St. Louis, MO
1-800-321-4054
average wait 12 - 18 months
The Hospital of the University of Pennsylvannia
Philadelphia, PA
(215)662-2365
average wait 11 - 12 months
USCD Medical Center
San Diego, CA
(619)543-7777
average wait for single lung 7 months
average wait for double lung 12- 18 months
Shands Hospital
Gainsville, FLA
800-749-7424
average wait 6 - 8 months
University of Washington Medical
Seattle, WA
(206)543-3090
average wait 12 months
University Hospital
Denver, CO
(303)270-7891
average wait max. 12 months
Presbyterian University Hospital
Pittsburgh, PA
(412)648-9136
average wait two years
Columbia Presbyterian Medical Center
New York, NY
(212)305-7600
average wait two - three years
UNC Hospitals
Chapel Hill, NC
(919)966-6038
average wait for single 12 - 15 months
average wait for double 18 - 24 months
Baylor University
Dallas, TX
(214)820-6856
average wait 6 - 12 months
Cedars-Sinai Medical Center
Los Angeles, CA
(310)855-2354
average wait 18 months
Mayo Clinic
Rochester, MN
800-422-mayo
average wait 2 -3 years
University of Michigan Medical Center
Ann Arbor, MI
(313)936-8535
average wait 12 - 18 months
Medical Center Hospital
San Antonio, TX
(210)567-5777
average wait nine months
University of Minnesota Hospital
Minneapolis, MN
1-800-688-5252
average wait one year
Loyola University
Maywood, IL
(708)216-1169
average wait 7 months
University of Illinois
(312)413-1900
Chicago, IL
average wait 4-5 months
Living-Related Liver Transplant Programs in the US
--------------------------------------------------
from Lisa Carroccio, Chairwoman & CEO Biliary Atresia & Liver Transplant Network
Livers4Kids@earthlink.net
Complete list also available at http://www.asf.org/livingrelated.html
Baptist Medical Center of Oklahoma
Boston's Children's Hospital
Cardinal Glennon's Children's Hospital
Children's Hospital Medical Center, Cincinnati, OH
Children's Hospital of Philadelphia (CHOP)
Dallas Liver Transplant Program
Denver Children's Hospital
Fairview-University Medical Center
Hermann Hospital
John Hopkins Medical Center
Massachusetts General Hospital
Medical College of Virginia Hospital
Mount Sinai Medical Center
St. Christopher's Hospital for Children
Stanford University/Lucille Salter Packard Children's Hosp.
Texas Children's Hospital
University of California at San Francisco (UCSF)
University of California at Los Angeles (UCLA)
University of Chicago/Wyler's
University of Miami/Jackson Memorial
University of Nebraska
University of Pittsburgh Children's Hospital
Washington University School of Medicine-St. Louis Children's Hospital
Wilford Hall Medical Center
============================================================================
III. Non-US professional organizations and patient support groups
============================================================================
If anyone would care to contribute information on transplant related
topics in other countries, please send it to
mike.holloway@stjude.org, or post it to bit.listserv.transplant.
Information from Wanda Bond, Gerald Huber, and Julio Real
UNOS-like Organizations and Transplant Programs in Other Countries
------------------------------------------------------------------
Metro Organ Retrieval, Toronto General Hospital 416/390-3587
Metro Transplantation, Montreal, Quebec 514/527-0047
Foothills Hospital, Calgary, Alberta 403/283-2243
Victoria General Hospital, Halifax, Nova Scotia 902/428-2222
Eurotransplant Foundation 011-31-071-268008
University Hospital
Rijnsburgerweg 10
2333 AA Leiden, The Netherlands
Attn: Bernard Cohen, Director
* As of October 10, 1995 Eurotransplant will be moving to:
Plesmanlaan 100
PO box 2304
2301 CH Leiden
the Netherlands
Attn: Bernard Cohen, Director
Phone: 011-31-71-(5*) 795 795
Fax: 011-31-71-(5*) 790 057
UK Transplant Center 011-44-272-507-777
Southmead Rd.
Bristol BS10 5ND
England
Scandia Transplant 011-46-8-7465-723
Dept. of Clinical Immunology
Huddinge Hospital
Huddinge, Sweden
Attn: Dr. Hakan Gobel
France-Transplant 011 -33(1)42.06.94.90
Hopital Saint Louis
1, av. Claude Vellefaux
75475 Paris Cedex 10
France
Attn: Pr. Jacques Hors, Secretary General
Center Hosp Lyon Sub, Lyon University, Division of
Nephrology, Pav 2F, 69310 Pierre Benite, Lyon Ph: (33)78 86
1309 Fax: (33) 78 861941
Hospital Edouard Herriot, Transplant Unit, Pl D'Arsonval,
69347 Lyon Cedex 03 Ph: (33) 78 540371 Fax: (33) 72
3370011
Organizacion Nacional de Trasplantes 011-34-1-3142406
Central Organ Exchange Coordination Office 3142474
Sinesio Delgado, 8 3142488
28029 Madrid 3142568
Spain 3142634
FAX: +34 3 314 29 69
Attn: Dr. Rafael Matesanz, National Transplant Coordinator 3142669
OCATT - Organitzacio Catalana de Transplantaments
Mejia Lequerica, 1
08028 Barcelona, Spain
voice Ph. +34 3 490 62 50
FAX +34 3 491 37 11
Head Coordinator: Dra. M. Antonia Viedma
Latvian Transplantation Center 011-007-0132-614210
13, Pilsonu str. 619091
P. Stradin Republic Clinical Hospital 613474
226002, Riga
Latvia
Swiss Transplant
National Reference Laboratory for Histocompatibility
Hopitat Cantonal Universitaire , Geneva
Switzerland
Attn: M. Jeannet or C. Goumaz
Hungary Transplant
Budapest 011-36-1-1334-143
1143-635
Szeged 011-36-06-62-21643
Dabrecen 011 -36-06-52- 18855
Italy-CCST 0l 1-39-91-651-7692-4
International Coordinating Center 011 -39-91 -543-554 Cod. 32118
Unsversita di Roma ZLa Sapienza"
II Clinica Chirurgica
Viale del Policlinico
00161 Roma
Italy
The European Transplant Coordinators Organization (ETCO)
--------------------------------------------------------
Contact: Linda Trekels, ETCO Executive Office, Steenveldstraat 18,
B-3210 Linden, BELGIUM.
Fax: +32-16-622-981.
Dialysis and transplant support groups:
---------------------------------------------
The list below was compiled by Gerald Huber
<Gerald.Huber@geographie.uni-regensburg.de>, Julio Real
<IQIREAL@CC.UAB.ES>, and Bernardo Brotas Carvalho
<bernardo@cfn.ist.utl.pt>.
Austria:
Gesellschaft Nierentransplantierter
und Dialysepatienten Oesterreichs
z. Hd. Hfrat Dr. Herbert Schmidt
Neulerchenfelderstr. 10/I/3/17
A-1160 Wien, Austria
Phone: (0043) 4083818
Europe:
CEAPIR
c/o Patricia Doherty
Pembroke Road
156 Ballsbridge
Dublin 4, Ireland
Phone: 00353-1-689788/9
Fax: 00353-1-683820
Germany:
DIATRA Verlag GmbH German Association of Dialysis Physicians
Postfach 12 30 Deutsche Dialysegesellschaft
D-65332 Eltville/Rhein niedergelassener Aerzte e.V.
Germany Bundesallee 243
Phone: (06123) 73478 D-42103 Wuppertal
Fax: (06123) 73287 Phone: 0202/445655
Federal Association of Transplant Recipients German Heart Foundation
Bundesverband der Organtransplantierten Deutsche Herzstiftung e.V.
Triftstr. 6 Wolffsgangstr. 20
D-13353 Berlin D-60322 Frankfurt am Main
Phone: 030/4617894 Phone: 069/9567980
German Foundation for Organ Transplantation Heartchild Association
Deutsche Stiftung Organtransplantation Herzkind e.V.
Emil von Behring-Passage Husarenstr. 70
D-63263 Neu-Isenburg D-38102 Braunschweig
Phone: 06102/359210 Phone: 0531/797121
Italy (north):
Associazione Altoatesina nefropatici
Via C. Battisti Str. Nr. 33
I-39100 Bolzano, Italy
or via the president
Florian Mair
St-Peter-Weg 19
I-39018 Terlan, Italy
Phone: (0039) 471/57595
JTR Japan Transplant recipients organization
Address:
Osaka-City Kita-ku Minamimori-mati 2-3-20-502, Japan
Address Number 530
TEL 06-362-0411 FAX 06-362-2068
Office Manager
Mr. Okubo Mitikata
Luxenburg:
Association Luaxembourgeoise des Malades Renaux e Transplantes a.s.b.i
BP 2713
L-1027 Luxembourg
Louxembourg
Vic Christoph, president
Phone: 00352/378458 or 44112022
Portugal:
(from Bernardo Brotas Carvalho <bernardo@cfn.ist.utl.pt>)
APIR Associacao Portuguesa de Insuficientes Renais
c/o Ma Alcina Ascencao
Address: Via Princ. de Peoes, Zona 1, Lote 105, Chelas
1900 LISBOA
PORTUGAL
Phone: +351 1 8575753
Fax: +351 1 8370826
Spain:
(From Julio Real <IQIREAL@CC.UAB.ES>)
ADER ('Asociacion de Enfermos Renales': kidney patients association)
---------------------------------------------------------------------
ADER is the Catalan association of kidney patients. Full members are all
affected of ESRD (dialysis or transplanted). Others may be associate
members, according to our bylaws. We are a non-profit organization,
founded in 1976, and with a membership of ca. 1600 today. Our main goals
are to assist patients with chronic renal failure in all aspects
concerning their quality of life, providing factual, psychological and
nutritional advice, and services. And to inform the Catalan society of
the need and importance of organ donation.
The general services the association offers include:
- Travel advice and arrangements for patients in dialysis, worldwide, for
work or vacation. - Physical rehabilitation (massages, yoga... ).
- Nutritional information: cooking classes for kidney patients and
family members. We are now publishing a cookbook for ESRD diet (in
Catalan, a Spanish version will be forthcoming).
- We have periodic lectures (by urologists, nephrologists, and
others...), on the latest advances in treatment an therapy, and other
topics of interest, such as tax deductions for the handicapped.
- We organize a Symposium on 'Dialysis, Transplant and Organ
Procurement'. This year it will be held in Barcelona, on the fall.
Nephrologists, urologists, organ procurement coordinators (so far only
from Spain) give lectures followed by brief discussions.
-We publish a book of 'Proceedings', with the (more or less) summarized
lectures (Spanish). These Proceedings are available at a cost of $15.-
plus postage. I will send a short list of titles-contents.
- We publish a newsletter four times a year (in Spanish), including
topics of general and local interest. Subscriptions are available at a
cost of $25.- + postage per yr.
- Recreational activities: excursions, art shows, sports competitions, a
children festival, with clowns, etc.
- We have an arrangement with a pager service providing company, so that
the members in the waiting list can carry one at a discount.
- We organize periodic Donor Awareness campaigns, including the distribution of
Organ Donor Cards, information leaflet distribution, etc.
Switzerland:
VNPS
c/o Yvonne Guerini-Brunner
7 rte de Founex
CH-1291 Commugny
Switzerland
Phone: 0041/22/7761113
There is also a French SSMIR and an Italian ASPIR
group under the same adress.
============================================================================
IV. Transplant fundraising
============================================================================
(see also the National Transplant Patient Resources Directory, part 3 of
the FAQ)
UNOS has a paper-bound booklet entitled "FINANCING
TRANSPLANTATION (What Every Patient Needs to Know)." The
booklet is FREE and a copy can be obtained by calling
1-800-24-DONOR. It is loaded with invaluable information
relevant to those individuals considering and/or awaiting organ
transplantation.
The following is from the BMT Newsletter, November 1993, and reproduced
by Kimberly.A.Montgomery.1@ND.EDU with the publisher's permission.
Copyright 1993
BMT Newsletter
1985 Spruce Ave.
Highland Park, Illinois 60035
708-831-1913
The information is applicable to any kind of transplant
fundraising. Two other excellent articles from the BMT Newsletter
on organizing fundraising and support are available in the TRNSPLNT
archive and at the Yale biomedical gopher (see above).
Agencies Provide Fundraising Help
---------------------------------
What do you do when you need to raise $10,000 for a bone narrow transplant,
but have no fundraising experience? Some BMT patients have turned to groups
such as the Organ Transplant Fund in Memphis TN or the Children's Organ
Transplant Association in Bloomington IN for help.
The Organ Transplant Fund (OTF) was founded in 1983 to raise funds for
organ transplant recipients. Since its inception, the group has
orchestrated more than 500 successful fundraising campaigns including 100
for bone narrow transplant patients. On average, $200,000 is raised per
patient, says national director Suzanne Norman.
Initially, a staff person from Organ Transplant Fund meets with the family
to identify a fundraising chairperson, and to set up a committee of local
volunteers. "We then meet with the volunteers, help them develop a
fundraising plan, and show them how to tap into resources in their
community quickly and effectively. We provide them with a fundraising
packet and ideas for events, as well as access to low-cost products they
might want to sell to raise funds such as cookbooks, candy bars, etc."
Funds raised through OTF are used solely to pay transplant-related
expenses. OTF controls the funds and administers payments directly to the
health care provider. In the event of death, funds remain in the patient's
account for up to one year to pay transplant-related bills. Thereafter, the
funds are transferred to a general account that provides emergency grants
and support services for future patients.
"Since contributions to the Organ Transplant Fund are tax-deductible.
working with us expands the universe of potential contributors," says
Norman. "Large corporations, for example, will simply not make a
contribution to an individual but they will contribute to a tax-exempt
organization."
Fundraising guidance is not the only help Organ Transplant Fund provides.
'"We offer our families a multitude of support services such as arranging
for lodging and transportation to the transplant center, identifying BMT
centers that do transplants for their particular disease, negotiating a
reduced down payment at the BMT center so the transplant can begin quickly,
etc." says Norman.
Organ Transplant Fund retains 5 percent of the funds raised to cover
administrative costs. "Many patients have told us that our support
services, alone, are worth the price," says Norman.
The Children's Organ Transplant Association (COTA) also provides
fundraising assistance to organ transplant patients, both children and
adults. Founded in 1985, the group has conducted more than 150 fundraising
campaigns on behalf of organ transplant patients, approximately half of
which have been for bone marrow transplant patients, according to COTA
executive director David Cain.
"The amount of money varies according to the number of volunteers working
on the fundraising campaign and the size of the community." says Cain.
"Typically, $75,000-$100,000 can be raised in a period of 60-90 days."
Like OTF, COTA asks families to identify a network of volunteers who will
orchestrate fundraising activities in the community. "We provide them with
a fundraising kit, ideas for events, and help with publicity," says Cain.
"Depending on the amount of money to be raised, COTA staff may meet with
the family or simply provide guidance over the phone."
All contributions are deposited in a tax-exempt COTA fund and are used
strictly to pay medical expenses. "It's important that the public have
confidence that their contributions will be used only for necessary medical
expenses," says Cain. "Having the funds controlled directly by COTA rather
than the family provides that assurance."
COTA's administrative expenses are covered by the interest earned on the
accounts into which funds raised for patients are deposited. All funds are
invested in government securities, says Cain.
"Our goal is not only to raise funds for transplant patients, but to get
the community educated and involved in the process," says Cain. "Our
emphasis is on having friends and neighbors help each other."
To contact the Organ Transplant Fund, phone 800-489-FUND. To contact the
Children's Organ Transplant Association, phone 800-366-2682. Life-Core
(Oregon), 503-366-9125, also provides fundraising assistance.
============================================================================
V. Live kidney donor information
============================================================================
The following is a summary of "Donating a kidney to a family member- How
primary care physicians can help prepare potential donors"
Authors: Michael L. O'Dell, MD
Kristi J. O'Dell, ACSW
Thomas T. Crouch, MD
VOL 89/NO 3/February 15, 1991/Postgraduate Medicine . Kidney
Donation
Summarized by Katherine Eberle, eberle@gdls.com for the
TRNSPLNT FAQ Jan 1994.
Preview
When a relative needs a kidney to survive, family members often
impulsively offer to donate one without stopping to consider the
physical, emotional, and financial ramifications, which can be
considerable. The family's primary care physician can be very
helpful in guiding and educating potential donors and, by arranging
for screening to be done in the community, can ease the financial
strain. The authors discuss the things a potential kidney donor
should consider.
The desirability of transplantation is increasing and the supply of
cadaveric kidneys falls far short of the demand. So searching for a
possible living related donor is becoming more and more common.
Much of the preliminary testing required to identify a donor can be
easily performed in the potential donor's community, under the
direction of the primary care physician in communication with the
transplant team. Additionally, the donor's care is aided when the
evaluating physician serves as an advocate.
Evaluation for Immunologic Match
Usually, the first test performed is determination of ABO blood type
compatibility. Many physicians follow ABO compatibility testing
with HLA typing.
Tests required by most centers and a description of results that may
prohibit transplantation:
TESTS Potential Disqualifying
Factor
History and Physical Age under 18 or over 55 yr
Examination Obesity
Hypertension
Systemic disorder with
potential to impair health
Psychiatric disorder
Deep vein thrombosis
Family history of polycystic
kidney disease,
diabetes in both parents,
hereditary nephritis,
systemic lupus erythematosus
Laboratory Studies
Blood typing Poor match with recipient
Complete blood cell count Anemia or blood dyscrasia
Automated biochemical Abnormalities indicating
analysis significant disease state
Screening for diabetes Evidence of diabetes
Serologic tests for syphilis Evidence of current
infection
Hepatitis B surface antigen, Evidence of current
antibodies, core antigen infection
Human immunodeficiency virus Evidence of current
testing infection
24-hr urine collection for
Creatinine Diminished clearance
Protein Significant proteinuria
Calcium Hypercalciuria
Oxalate Hyperoxaluria
Urate Hyperuricemia
Urine osmolality after Inability to concentrate to
overnight thirst >700 mOsm/L
Urinalysis Unexplained hematuria and/or
other abnormality
(eg, proteinuria)
Urine culture Evidence of urinary tract
infection
Pregnancy test (where Positive for pregnancy
applicable)
HLA typing Poor immunologic match with
recipient
Radiographic Studies
Chest x-ray film Evidence of significant
disease
Intravenous urography Anatomic abnormality
Renal arteriography Anatomic abnormality
Other Studies
other significant
abnormality
Tuberculin and Candida skin Evidence of active
tests tuberculosis or anergy
Multiple gated acquisition Evidence of ischemic heart
stress test (in men over age disease
45 yr and women over 50 yr)
Pulmonary function testing Significant abnormality in
(in smokers) lung function
If the potential recipient is a reasonable match, renal angiography
is performed to determine which of the donor's kidneys is the more
accessible and the better anatomic match and to screen for
abnormalities that might preclude uninephrectomy. In general, the
left kidney, with its longer renal vein, is selected.
Potential donors should also be screened for psychosocial risk
factors. An evaluation of the stability of the individual and the
family and the financial impact of donation should be undertaken.
This is often performed by social workers. An important
consideration is psychosocial evaluation is whether the potential
donor is being coerced into the donation. Purchase of a kidney is
illegal in the United States. Occasionally, evaluators discover
potential donors who are unwilling to donate and yet are being
significantly pressured to do so by family members. Such persons
should be skillfully assisted in resisting such coercion, perhaps by
honestly describing them as "not an appropriate match."
Potential Disqualifying Psychosocial Factors in Kidney
Donor:
Evidence of significant coercion to donate
Evidence that donation would cause extreme financial
hardship
Evidence that spouse is strongly opposed to donation
Evidence of significant psychiatric disturbance
Often, family members spontaneously decide to donate a kidney before
they have had an opportunity to consult medical personnel. They
make their decision on moral rather than technical grounds, often
describing it as "the right thing to do" or their "calling."
Effects on the Donor
PHYSICAL EFFECTS - The actual risks to the donor from uninephrectomy
may be divided into short- and long-term. Short-term risks are those
typically seen with this major surgical procedure (ie, pulmonary
embolus, severe infection or sepsis, renal failure, hepatitis,
myocardial infarction, splenic laceration, pneumothorax). Estimates
of the mortality rate are generally less than 0.1% and of
significant complications less than 5%. Less than 1% of donors have
any permanent disability. Long term risks are controversial and
largely unknown. In one third of all donors, nonprogressive
proteinuria develops. This finding has led to a recommendation that
donors restrict their protein intake after uninephrectomy. In
addition, donors experience a slight rise in the serum creatinine
level, which is also nonprogressive.
PSYCHOSOCIAL EFFECTS - These risks to potential and actual donors
may also be short- or long-term. Potential donors who choose not to
donate may experience guilt about their decision or be ostracized by
the family, although detailed studies of potential donors who choose
not to donate are few.
About one fourth of those who choose to donate experience moderate
to severe financial difficulties. Even though the cost of the
evaluation and procedure is borne by the federal End Stage Renal
Disease Program, unreimbursed financial losses resulting from job
absence and travel can be significant. Most authorities cite a
return to work 4 weeks after uncomplicated uninephrectomy. Some
centers use donor- specific blood transfusions as a means of
enhancing graft survival. This requires blood donation from the
potential donor several days before the actual procedure, which may
extend the time away from home and work.
Troubled marriages may fail when the added stress of a kidney
donation is introduced. According to one study, one third of the
couples whose marriage failed cited the kidney donation as a major
factor in the failure.
Although much attention may be lavished on the donor in the
perioperative period, it may be short-lived and tends to quickly
refocus on the recipient. The recipient may, paradoxically,
criticize the donor's decision or become distant or angry toward the
donor.
However, the increase in self-esteem gained from the altruistic
action of donating a kidney may counterbalance such losses.
Donation of a kidney has provided many donors with a sense of deep
satisfaction.
In view of the potential risks to donors, some centers refuse to
perform transplantation from a living related donor. With effective
immunosuppressive therapy, cadaveric transplantation is quite
successful, and these centers argue that the benefit to the
recipient is not greatly enhanced by transplantation from a living
related donor. However, cadaveric organs are scarce. In contrast,
proponents of transplantation from a living related donor argue that
thwarting legitimate altruistic behavior by denying the procedure is
paternalistic, particularly since enhanced graft survival is noted
in such recipients compared with recipients of a cadaveric
transplant.
Conclusion
Although the use of living related donors will remain controversial,
everyone involved should be struck by the courage of those willing
to donate a kidney to a relative. For physicians providing care to
these families, an exceptional opportunity for guidance exists.
============================================================================
VI. Renal transplant specific sources and information
============================================================================
(see also the National Transplant Patient Resources Directory, part 3 of
the FAQ)
NATIONAL AMERICAN ASSOCIATION OF KIDNEY PATIENTS (AAKP)
-------------------------------------------------------
100 S Ashley Dr # 280
Tampa FL 33602
(800) 749-2257
Here are the chapters in the U.S.: (Names listed are 1995 chapter President)
NORTHERN REGION
* Meadowsland Chapter * Northern NJ Chapter
Howard Hurwitz Stan Gottlieb
PO Box 3032 528 Dinah Rd
Clifton NJ 07012-3032 Landing NJ 07850
(201) 471-5674 (Day) ((201) 398-2391
* Garrett Mountain Chapter * Long Island Chapter
Juana Santana Margie Ng Gencarelli
115 Genessee Ave 2 Maplewood Ave
Patterson NJ 07850 Farmingdale NY 11735
(201) 278-7860 (516) 756-9126
* New York Chapter
John Igoe
1541 Williams Bridge Rd, 5J
Bronx NY 10461
(718) 597-9750
WESTERN REGION
* Central Arizona Chapter * Colorado Chapter
Dale A. Ester Lew Gaiter
4401 W Hatcher Rd PO Box 8442
Glendale AZ 85302-3821 Denver CO 80201
(602) 939-7248 (303) 758-8610
* Harbor-South Bay Chapter * Sacramento Valley Chapter
Mary Heisick Patricia Jones
PO Box 8 565 Morrison Ave
Seal Beach CA 90740 Sacramento CA 95838
(310) 430-0786 (916) 924-1996
* Redding California Chapter * Los Angeles Chapter
Jamie Hale Judy Weintraub
18388 Utility Ave PO Box 76E87
Anderson CA 96007 Los Angeles CA 90067
(916) 246-7881 (310) 277-1763
SOUTHEASTERN REGION
* Palm Beach Chapter * South Florida Chapter
Ben Altman Rick Kral
7748 A Lexington Club Blvd 11501 NW 18th Court
Delray Beach FL 33446 Plantation FL 33323
(407) 499-2910 (305) 472-7935
MIDWEST REGION
* Alabama Chapter * Atlanta Georgia Chapter
John Streeter Pamela Printup
1408 29th St, North 6409 Lakeview Dr
Birmingham AL 35234 Buford GA 30518
(205) 252-9556 (404) 932-1100
* Chicagoland Chapter * Miami Valley Ohio Chapter
Gloria Combs Bob Felter
70 Lincoln Oaks Dr #707 4511 W State Route #571
Chicago IL 60514 West Milton OH 45383
(708) 325-3475 (513) 698-5847
* Rome Georgia Chapter
Hazel McDowell
118 Woodcrest Dr
Rome GA 30161
(706) 232-8989
SOUTHERN REGION
* Bayou Area Chapter * New Orleans Chapter
Louisiana Barrios Nick Blady
PO Box 400 3912 Delhi St
Lockport LA 70374 Metairie LA 70001
(504) 532-3542 (No phone listed)
* North Louisiana Chapter * Lone Star Chapter
Mike Salvail Charles Sawyer
2620 Centenary Blvd, Suite 110 7311 Lunar Dr
Shreveport LA 71104 Austin TX 78745
(318) 222-0400 (512) 448-3676
The Diabetes Transplant Exchange
--------------------------------
is an educational and social forum for people who have chosen to cure
diabetes through transplantation and for those interested in the advances
in immunology and transplantation to cure diabetes. For those living in
reach of New York City, events are held every three months (by invitation
so we know how many guests to expect). Currently there are 150 members in
the New York region (NY,NJ, PA, CT, MA). Regional affiliates are being
established. The Diabetes Transplant Exchange was founded in December
1994 by Deb Butterfield (kidney and pancreas recipient 4/93 and 8/94).
For information contact Deb Butterfield at <diabtx@aol.com> or by snail mail
at 345 East 69th St, 11G, New York, NY 10021
NATIONAL KIDNEY FOUNDATION
--------------------------
30 E. 33rd Street, 11th Floor
New York, New York 10016
800-622-9010
NKF's new Family Focus Program features two newsletters "The Parent
Connection" and "Straight Talk", for parents, and for children and
young adults respectively. If you would like to receive a free
subscription at home, please write to "PCST" c/o the address above
or call using the above phone number.
Information below contributed by Alex Bost, alex@unx.sas.com
*** Periodicals (Magazines) Available to Renal Patients:
RenaLife
Semi-Annual Publication
Publisher: American Association of Kidney Patients
Cost: Free with Membership
Contact: See AAKP above
For Patients Only
Bimonthly Publication
Publisher: Contemporary Dialysis, Inc.
Cost: $17/year; $27/two years; Canada, $22/year; Foreign, $32/year
Contact: For Patients Only 6300 Variel Ave. Suite I.
Woodland Hills, CA 91367.
*** Do I need a Hepatitis B Vaccine?
Hepatitis B is a serious viral disease that attacks the liver. It is
highly contagious and is potentially fatal. While there is no cure for
the dangerous Hepatitis B, there is a vaccine available.
Immunization is recommended for persons of all ages, especially those
who are in a high-risk category: healthcare workers; abusers of
injectable drugs, sexually active individuals (including heterosexuals
with more than one partner in a six month period; homosexuals;
bisexuals), patients on dialysis or those receiving frequent blood
transfusions, and patients waiting for organ transplantation.
If you fit into any of these categories, you should ask your physician
about the Hepatitis Vaccine.
*** Should I get a Flu Shot?
Yearly immunization for the influenza virus is recommended for anyone
who has a chronic condition. If you are a transplant recipient or on a
donor list, ask your physician about the Flu Vaccine. Starting in 1993,
Medicare will pay for the influenza vaccine.
===========================================================================
VII. Bone marrow transplant specific sources
===========================================================================
Become a marrow donor - (800)MARROW-2
---------------------
Information about how to be registered in the database for tissue type
matching and bone marrow donation can be obtained from the National Bone
Marrow Registry at (800) MARROW-2 (see WWW page info below). They'll answer
any questions and provide you with local centers for testing. To
register, a small amount of blood is needed for typing. The operation to
remove marrow is simple and only slightly discomforting. Within days, a
donor regenerates the marrow.
Bone marrow transplantation (BMT) is an effective treatment for some
forms of leukemia and is being evaluated in treatments for other
kinds of cancer. A donor is needed who matches the patient's tissue
type in order to make the transplant work. Since the odds of any two
people matching are small, a large number of possible donors is
needed in order to find a match.
Resources
---------
BMT-TALK mail list discussion group:
bmt-talk@ai.mit.edu is a moderated mailing list for the discussion
of Bone Marrow Transplants. To subscribe to bmt-talk send mail to
bmt-talk-request@ai.mit.edu with the only word "subscribe" (no
quotes) in the body of the message.
The BMT Newsletter is published bi-monthly by a former BMT patient for
BMT patients. It is free, although they also accepts contributions. The
address is: BMT Newsletter, 1985 Spruce Ave., Highland Park, IL 60035,
phone 708-831-1913. The on-line version is available through the
Oncolink gopher site (see below).
BONE MARROW TRANSPLANT SUPPORT NETWORK (800-826-9376)
A telephone support network for Bone Marrow Transplant patients &
families.
BMT information web and gopher sites:
-------------------------------------
The Anthony Nolan Bone Marrow Trust
-----------------------------------
http://wombat.doc.ic.ac.uk/bone-marrow/index.html
The Anthony Nolan Bone Marrow Trust, a leading centre for research and
also runs the UK register of potential donors. The more people there are
on the register, the better the chance of finding a compatible donor.
This site references other BMT international BMT sites.
Cambridge University Bone Marrow Campaign
-----------------------------------------
gopher.cam.ac.uk (port 70)
under Cambridge University / University Society Information /
Cambridge University Bone Marrow Campaign.
Alternatively, use the URL:
gopher://gopher.cam.ac.uk/11/CambUniv/univsoc/cubmc/
Contains the Bone Marrow Donation FAQ, information on the Cambridge
University Donor Clinic, and other sources.
The National Marrow Donor Program Information Web Site
------------------------------------------------------
http://WWW.Marrow.Org/
The NMDP maintains a computerized Registry of volunteer marrow donors,
willing to become donors if ever matched with a patient in need of a
transplant. Read further to find out how you can become a volunteer
donor or obtain help through the NMDP.
Contents:
Donor Story
Recipient Story
Questions & Answers
How Do I Become A Donor?
Contacting the National Marrow Donor Program
Current News
Links of Interest
Oncolink
--------
Information and on-line versions of the BMT Newsletter and the BMT
Handbook can be found in Oncolink.
http://oncolink.upenn.edu/
BMT information can be found in the Radiation Oncology and Medical
Oncology directories. A link to this BMT information has been made
through the transplantation information directory in the Yale
biomedical gopher site (Part 1, section II).
Bone marrow registries outside the US
-------------------------------------
The Australian Bone Marrow Donor Registry
Bone Marrow Transplant Unit
153 Clarence Street
Sydney, NSW 2000
Australia
Telephone: +61 2 229 4369
Linda Albinet
CNCC
401-555 West Eighth Avenue
Vancouver
Canada
V5Z 1C6
Telephone: +1 604 879 7551
Fax: +1 604 879 4255
Deutsche Knochenmarkspenderdatei
Kreuzstr. 52
D-72074 Tuebingen
Germany
Telephone: +49 (7071) 84400
Fax: +49 (7071) 27116
The Norwegian Bone Marrow Donor Registry
Institute of Transplantation Immunology
National Hospital
N-0027 Oslo 1
Norway
Telephone: +47 22 86 70 10
Bone Marrow Donor Programme
W.H.O. Immunology Center
National University of Singapore
Singapore 0511
Telephone: +65 772 3318
Fax: +65 777 5720
E-mail: micrenec@nus.sg
Bone Marrow Registry
Department of Clinical Immunology
F79, Huddinge Hospital
S-141 86 Huddinge
Sweden
Telephone: +46 (8) 746 8020
The Anthony Nolan Bone Marrow Trust
The Royal Free Hospital
London NW3 2QG
United Kingdom
Telephone: 0171 284 1234
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