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 VII), a volunteer 
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 employ 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 "Organ Trafficking Myths", a paper by Todd 
Leventhal, USIA Senior Policy Officer, and "UNOS paper on organ 
theft myths", available through the Yale biomedical gopher (see 
above).


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 two 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:

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 after 6/1/94)

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 soon to be 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
======================================================================
====

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.

The following appears at the head of the petition sheet:
-----------------------------------------------------------------------
--
December 31, 1993         Revision No. 11    225,859 signatures 
secured

Ed Heyn, Chairman of Organ Transplants of Southwestern Michigan 
Support 
Group, has begun a campaign to create a United States postage stamp to 
promote organ donor awareness.  Eds's group must receive a positive 
recommendation from the Citizen's Stamp Advisory Committee before they 
go 
to the Postmaster General.  Please sign this support signature sheet 
and 
pass it around.  Upon completion please return it to the address on 
the 
bottom of this sheet.  This stamp will encourage donor awareness,
donor 
awareness saves lives.

Please return to Ed Heyn, 8637 Ruggles Rd. Baroda, MI 49101
-----------------------------------------------------------------------
---


Sources of the "Don't take your organs to heaven.  Heaven knows we 
need 
them here" bumper stickers and other materials:

The Aurora Group in Arkansas: 501-2-CHANCE.  
The New York Regional Transplant Organization: 212-870-2240 and 
  212-861-7370
UNOS (see below).

======================================================================
==== 
VII. Sources of information on organ donation and transplantation
 -Patient support groups
======================================================================
====

UNOS 
---- 
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.
------------------------------------------------

"UNOS Update" June '93, July/August `93 and Sept/Oct `93 issues,  
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 above).

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@comm5.unos.org.


The Partnership for Organ Donation, Inc.
----------------------------------------
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
100 Oliver St. International Place
Boston, Massachuetts  02110

telephone:(617)330-8650.
fax:(617)330-8651


Support groups
--------------

TRIO
----
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: (412) 687-2210.  They also have pamphlets and 
organ donor cards available.

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

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.


Long distance love
------------------
The Sept/Oct `93 issue of UNOS Update carried a story about a pen-pal 
support network for transplant recipients.  The address is: Long 
Distance 
Love, P.O. Box 2301, Ventnor, NJ 08406.  A $6 donation is requested.


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 and Magazines
-------------------

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 gratis subscription 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


"Taking Heart" by A.C. Greene.  
1990, Simon & Schuster.
A first person account by a heart transplantee. 

 
======================================================================
======
VIII. European 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.

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

 UK Transplant Center    011-44-272-507-777


(continued next message)
                                                                             

@FROM   :mhollowa@epo.som.sunysb.edu                                  
@SUBJECT:bit.listserv.transplant FAQ, Organ transplantation newsgroup 
@PACKOUT:10-23-94                                                     
(Continued from last message)
 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 Deloado 8     3142488 
 28029 Madrid     3142568
 Spain      3142634
 Attn: Dr. Rafael Matesanz, National Transplant Coordinator 3142669

 Organizacion Nacional de Trasplantes   011-34-3-4125454
 Coordinating Office for International Organ Exchange 4120969
 Gran Via de las Corts Catalans    5913398303
 I.C.S. Building, 5th Floor
 08007 Barcelona
 Spain
 Attn: Dra. Rosa Deulofeu

 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
 Hop i tat Can tonal Uni versi taire , 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 kidney transplant support groups: 
---------------------------------------------
The list below was compiled by Gerald Huber 
(Gerald.Huber@geographie.uni-regensburg.de).  

Germany: 
DIATRA Verlag GmbH
Postfach 12 30
D-65332 Eltville/Rhein
Germany 
Phone: (06123) 73478
Fax: (06123) 73287

Austria: 
Gesellschaft Nierentransplantierter 
 und Dialysepatienten Oesterreichs
z. Hd. Hfrat Dr. Herbert Schmidt
Neulerchenfelderstr. 10/I/3/17
A-1160 Wien 
Austria
Phone: (0043) 4083818

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. 

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

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

Europe:
CEAPIR
c/o Patricia Doherty 
Pembroke Road 
156 Ballsbridge 
Dublin 4
Ireland 
Phone: 00353-1-689788/9
Fax: 00353-1-683820

======================================================================
======
IX. Transplant fundraising 
======================================================================
======
(see also the National Transplant Patient Resources Directory, part 2 
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.


======================================================================
======
IX. 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 


(continued next message)
                                                                                                               

@FROM   :mhollowa@epo.som.sunysb.edu                                  
@SUBJECT:bit.listserv.transplant FAQ, Organ transplantation newsgroup 
@PACKOUT:10-23-94                                                     
(Continued from last message)
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.  

======================================================================
======
X. Renal transplant specific sources and information
======================================================================
======
(see also the National Transplant Patient Resources Directory, part 2 
of 
the FAQ)

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 in "Associations" Section


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.

======================================================================
=====
XI. 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.  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 above).

BONE MARROW TRANSPLANT SUPPORT NETWORK (800-826-9376)
A telephone support network for Bone Marrow Transplant patients & 
families.


BMT information gopher sites:
-----------------------------
Oncolink

Information and on-line versions of the BMT Newsletter and the BMT 
Handbook can be found in Oncolink.
WWW: http://cancer.med.upenn.edu/
gopher: cancer.med.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 (section II).

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.








