Collection of Internet/Collection of Internet.iso/faq/sci/medicine/transpla/part1

Internet Message Format | 1994-03-31 | 42KB

Path: bloom-beacon.mit.edu!hookup!swrinde!cs.utexas.edu!howland.reston.ans.net!darwin.sura.net!udel!newsserv.cs.sunysb.edu!ysics.physics.sunysb.edu!mhollowa
From: [e-mail] (Michael Holloway)
Newsgroups: bit.listserv.transplant,sci.med,sci.answers,news.answers
Subject: bit.listserv.transplant FAQ, Organ transplantation newsgroup (Part 1 of 2)
Followup-To: bit.listserv.transplant
Date: 31 Mar 1994 20:18:37 GMT
Organization: Institute For Theoretical Physics
Lines: 903
Approved: [e-mail]
Distribution: world
Expires: 04/30/94
Message-ID: <medicine/[e-mail]>
Reply-To: [e-mail] (Michael Holloway)
NNTP-Posting-Host: csws2.ic.sunysb.edu
Summary: This is a description of the bit.listserv.transplant newsgroup
    and its parent mail list, TRNSPLNT.  Frequently asked
    questions regarding organ transplantation are addressed.
    A list of resources for transplantation patients is provided.
Originator: [e-mail]
Xref: bloom-beacon.mit.edu bit.listserv.transplant:678 sci.med:37272 sci.answers:1028 news.answers:17058

Posted-By: auto-faq 2.4
Archive-name: medicine/transplant-faq/part1

3/31/94

Modifications since 2/14/94:

Addition of donor awareness stamp campaign information and sources for
  stickers, buttons, etc.(item VI).
Additional drug company information added to the resources
  directory (part 2).
Added UNOS's info e-mail address to Joel Newman.
Added info on "Encore: Another Chance at Life" gratis magazine
  subscription (item VII) and info about the magazine's publisher,
  Chronimed Pharmacy, to part 2.

Contents

Part 1:
I. The TRNSPLNT mail list
II. Organ and tissue transplant info via gopher
III. Organ donation, frequently asked questions
IV. The organ donor shortage
V. Transplant and organ donation myths
VI. Organ donor awareness postage stamp campaign and other awareness
    materials
VII. Sources of information on organ and tissue donation and
     transplantation
VIII. Transplant fund raising (BMT Newsletter)
IX. Live kidney donor information
X. Renal transplant specific sources and information
XI. Blood marrow transplant specific sources

Part 2:
National Transplant Patient Resources Directory


About this FAQ
 --------------
This FAQ is archived at rtfm.mit.edu and available by gopher or ftp
under usenet/bit.listserv.transplant.

The subjects treated in this FAQ are, for the most part, specific for the
state of organ and tissue transplantation in the United States.  If
anyone would be interested in providing information that might be helpful
to people of other countries please let me know.  If anyone has other
information they would like to have included in this FAQ please send it
along.

Many thanks to the people who have contributed information and otherwise
helped with the FAQ: Alex Bost, Dan Flasar, Kimberly Montgomery, Arthur
Flatau, Katherine Eberle and Anne Treffeisen.  Part 2, the National
Transplant Patient Resources Directory, lists information on
organizations providing support (financial and otherwise) to transplant
patients.  It is taken largely from a pamphlet published by Stadtlander
Pharmacy and The Transplant Foundation, a copy of which can be found on
Yale biomedical gopher site.

Mike Holloway
[e-mail]

=========================================================================
I. Description of the TRNSPLNT mail list and bit.listserv.transplant
=========================================================================

bit.listserv.transplant is a bi-directional echo of the listserv mail
list TRNSPLNT.  If you have an interest in transplantation, and think
that the posted news and discussions are of interest, it may be more
convenient for you to subscribe.  This also provides a way to see who's
listening since a list of subscribers and their addresses can be accessed
through the listserv.  All posts to TRNSPLNT or bit.listserv.transplant
are archived by the listserv system at Washington U.  You can get an
index of the archive by following the directions below.  To have a list
of listserv commands sent to you, send mail to [e-mail]
and place either HELP or INFO REFCARD on the first line of text.

Below is the introduction to TRNSPLNT written by Dan Flasar.  Since Dan
started the group early in `93 the posts have been on everything from
copies of news and information to recipes for low salt diets.  It has
been a useful electronic support group for some participants who are
either waiting for a transplant, recovering from a transplant, or just
getting on with life after a transplant.  We encourage recipients,
caregivers and medical professionals to introduce themselves to the
group.  The list is also a tool for organ and tissue donor education.

-------------------------------------------------------------------------
TRNSPLNT on [e-mail]
         or [e-mail]

   TRNSPLNT is a discussion list for organ transplant recipients and
   anyone else intested in the issues, experiences and realities of
   living with an organ trasplant.

   Over the last 30 years, the number of transplants performed each year
   has grown steadily in both absolute numbers and type of organs
   transplanted.

   Though there are hospital, clinical and pharmaceutical
   industry-sponsored newsletters, there are few, if any, completely
   independent discussion forums for those who have experienced this
   oftentimes dramaticaly effective therapy.

   There are many life issues for the transplant patient that are simply
   not covered in medical literature or by medical personnel.  TRNSPLNT
   will provide a way for members to share information on such things as
   as travel, both domestic and abroad, how to deal with a compromised
   immune system, stories about transplant experiences, and anything
   that the members feel is worth discussing.

   Archives of TRNSPLNT postings can be listed by sending an
      INDEX TRNSPLNT
   command to [e-mail] (or [e-mail]).

   To subscribe, send the following command to [e-mail]
   or [e-mail] via email:

      SUB TRNSPLNT Your Full Name

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

      SUB TRNSPLNT Billy Rubin

   Owner: Dan Flasar [e-mail]

   NOTE: This is NOT a medical forum!  Though advice may be offered, you
   should, as with any medical issue, check with your physician before
   you accept anything said in this forum as a basis for doing anything
   that might affect your physical condition!


=========================================================================
II. Organ and tissue transplant info via gopher
=========================================================================

The Yale biomedical gopher is accepting information related to
transplantation for presentation at their gopher site.  As of this
writing, issues of UNOS Update, UNOS ethics committee and statistics
reports, Stadtlanders list of support groups for transplant patients
and excerpts of the National Kidney Foundation newsletters are
available.

Point your gopher at:

                Hostname:       yaleinfo.yale.edu
                Port:           7000

The "Organ and tissue transplant information" submenu is under "Biomedical
disciplines and specific diseases/diseases and disorders".

Any organization that has information, newsletters, or papers that
they would like posted are invited to send an ASCII file to Susan
Grajek at Yale, email: [e-mail], phone:
203-785-5181.  Other file types can be accommodated but please check
with Ms. Grajek ahead of time.  If you need help with e-mail or
preparation of the file, please contact Michael Holloway at
[e-mail], phone: [phone].  Most word
processors have a simple command for making an ASCII, or plain text,
file from anything created in that program.

=========================================================================
III. Organ donation, frequently asked questions
=========================================================================

contributed by Alex Bost, [e-mail]

*** Commonly Asked Questions About Being an Organ Donor:

- Where can I get an Organ Donor Card?

  Many organizations, including the NKF and AAKP will provide donor
cards free of charge.  Many physicians, pharmacies, and hospitals will
also provide them.
[Free cards and pamphlets also available from (800)24-DONOR]

- Should I mention being an Organ Donor in my Will?

  No.  Your will may be read too late to take your organs.  However,
you should definitely mention Organ Donation in your Living Will.

- What is a Living Will?

  A Living Will is a document where you stipulate what kind of medical
attention you will receive if you are unable to make decisions for
yourself.  You may state your wish to become an organ donor in a Living
Will.

- Who pays for the medical costs of being a donor?

  The transplant recipient is responsible for all costs involved in
organ procurement.  The donor's family will not pay any of the cost.

- Does organ donation disrupt funeral arangements?

  No.  Organ donation will not disfigure the body.  A donor may still
have an "open casket" funeral.

- Will becoming a donor mean a doctor will let me die?

  Absolutely not!  Medical personnel must follow very strict guidelines
before a donor can be pronounced dead.  You can expect the same quality
of health care as you would if you weren't a donor.

------------------------------------------------------------------------
The following was written by Anne Treffeisen of the Long Island Chapter
of TRIO (Transplant Recipients International Organization)
(516-421-3258).  The week of April 18th to the 24th has been proclaimed
National Organ and Tissue Donor Awareness Week by the US Congress.  She
asks that pastors or rabbis include mention of the gift of life in their
sermon or bulletin during this week and provides this message as a guide.

ORGAN DONATION AND TRANSPLANTATION FACT SHEET

The donation of organs is a unique opportunity to save lives.
It is possible for the organs, tissues, and corneas of a single
donor to save or help as many as 25 people.

Transplantation works.  As of 1993, over 160 thousand people
have been transplanted, and the majority are living full
productive lives more than five years after surgery.

Over 28,000 people in the United States, many of them children
under 10 years of age, are currently waiting for transplants,
and someone is added to the waiting list every 30 minutes.
Many will die waiting.

All potential recipients are listed on the United Network for
Organ Sharing, UNOS, computer.  Organs are assigned as they
become available considering the severity of a patient's
condition, medical requirements (such as blood type, size, and
tissue match), proximity to the available organ, and time on
the waiting list.

More organ donors are needed.  Only about 20% of the potential
donors actually have their organs donated.

Organ donors are healthy people who have died suddenly, usually
through accident or head injury.  They are brain dead.  The
organs are kept alive through mechanical means.

No one involved with the life saving care of an individual is
involved in the transplantation or organ recovery process.  No
one on the transplant team has any role in the diagnosis,
treatment or declaration of death of a patient.

Organs for transplant must be made available soon after death.
Organ removal will not take place without the permission of the
next of kin.  Therefore, the decision to donate should have
been discussed earlier and the next of kin should understand
and be prepared to carry out their loved one's wishes.  This is
the heart of DONOR AWARENESS.

There is no cost or payment to the donor family or estate.  All
normal funeral arrangements are possible.

All religious groups approve of organ and tissue donation as
charitable acts toward one's fellow human beings.

Organ donation is a true gift.  In general, the donor family
will never know the recipient.  They do know that out of their
tragic loss, they have given others life and health.


==========================================================================
IV. The organ donor shortage
==========================================================================

UNOS statistics reveal that in 1992, on average, 7 people a day died in
the US while on the waiting list.  As organ transplantation has passed
out of the experimental stage, the number of people with end stage
diseases seeking a transplant has slowly but steadily increased.  The
number of donations however, has not increased.  Sadly, this is not
because there are not more potential donors.  Various estimates are that
anywhere from 60 to 80% of potential donations are either refused by the
next-of-kin or are never requested.  These estimates take into account
the criteria for brain-dead, heart-beating donors and other
contraindications.  Roughly half of the missed donations appear to result
from failure of physicians to either declare brain death in a timely
manner, or their failure to notify their Organ Procurement Organization
of potential donors.  This is despite enactment in all 50 states of
"required request" legislation that mandates that all potential donations
be sought.  Apparently, there is no enforcement of these laws.

There are a variety of proposals to increase the number of donations, for
example: public and professional education, and changing the structure of
donation from a required opting-in to a required opting-out strategy.
These and others have all met with resistance from sectors of the medical
community, public and government that don't seem to realize that the
present system, and the people trapped in it, are in a crisis situation.

References:

Wolf JS
The role of the United Network for Organ Sharing and designated
organ procurement organizations in organ retrieval for transplantation.
Arch Pathol Lab Med 1991 Mar;115(3):246-9

Prottas J  Batten HL
Health professionals and hospital administrators in organ
  procurement: attitudes, reservations, and their resolutions.
Am J Public Health 1988 Jun;78(6):642-5

Annas GJ
The paradoxes of organ transplantation [editorial]
Am J Public Health 1988 Jun;78(6):621-2

Evans RW  Orians CE  Ascher NL
The potential supply of organ donors. An assessment of the efficacy
  of organ procurement efforts in the United States.
JAMA 1992 Jan 8;267(2):239-46

Spital A
Mandated choice. The preferred solution to the organ shortage?
Arch Intern Med 1992 Dec;152(12):2421-4

"Solving the Organ Donor Shortage", The Partnership for Organ Donation,
Inc. [phone].

UNOS Ethics Committee Reports on alternatives for organ donation:
"Financial Incentives for Organ Donation"
"Preferred Status for Organ Donors"
"An Evaluation of the Ethics of Presumed Consent and a Proposal Based on
Required Response"
- available from UNOS [phone]
- also available through the Yale biomedical gopher, yaleinfo.yale.edu
  port 7000


==========================================================================
V. Transplant and organ donation myths
==========================================================================

As with any new technology, rumors, myths and misunderstandings about
organ transplantation are wide spread.  Frustration produced by the high
cost, the effect of the organ donor shortage, and the unavailability of
transplantation throughout most of the rest of the world have probably
contributed to this.  Since rumors can often be more entertaining than
the truth, tabloid media will often pick up and help spread them, despite
the great harm they cause.  Urban legends about organ transplantation are
uniquely dangerous since organ transplantation can not succeed without
the participation and support of the majority of the population.  Bad
press, urban legends, even fiction portraying organ transplantation as
somehow evil, all have prevented full support for donation and led to the
death of people who might otherwise be leading productive and happy lives
now.

Another factor fueling the proliferation of myths is the unfortunate
institution in India of payment for unrelated live kidney donation that
preys on the poor in that country.  While it may be true that the Indian
medical community is not required to abide by western standards of
ethics, neither is the US medical community required to interact with
them, train their physicians, publish their research, etc.  Its past time
that the US medical community started taking visible responsibility for
influencing transplantation ethics in foreign countries.

The black market myth:
----------------------

There has never been any evidence produced that a black market in organs,
or organ-swiping, exists.

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 this
simple fact 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.

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 sticker 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
==========================================================================

UNOS
----
The United Network of Organ Sharing is a private, nonprofit,
corporation that set up, and continues to receive the federal
contracts to run, the Organ Procurement and Transplantation Network
(OPTN) and the U.S. Scientific Registry for Organ Transplantation
mandated by federal law.  In addition to it's responsibilities
related to procurement, matching and distribution of solid organs,
the latest renewal of these contracts places greater responsibility
on UNOS for communicating information to the public concerning organ
donation and transplantation. Information from UNOS on a number of
topics ranging from transplant center statistics to transplantation
ethics is available by e-mail, phone, mail, and through their
monthly to bi-monthly magazine "UNOS Update".  Sometime toward the
middle of 1994, they plan on making data and information available
to the general public over Internet.

"UNOS Update" June '93, July/August `93 and Sept/Oct `93 issues,
the UNOS Ethics Committee whitepaper reports on alternative organ
donation and a sample of a recent UNOS statistics report on organ
transplantation, are in the TRNSPLNT archive and available through
the Yale biomedical gopher (see above).

The UNOS 800 number for organ donation information, pamphlets, and organ
donor cards is: 1-800-24-donor.

To request transplantation statistics, UNOS Update, or ethics
committee reports call [phone].  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 [e-mail].

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: [phone].  They also have pamphlets and
organ donor cards available.

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.

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

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.

============================================================================
VIII. Transplant fundraising (BMT Newsletter)
============================================================================
(see also the National Transplant Patient Resources Directory, part 2 of
the FAQ)

The following is from the BMT Newsletter, November 1993, and reproduced
by [e-mail] 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 will
soon be available at the Yale biomedical gopher (yaleinfo.yale.edu port
7000).

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 [phone]. 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, [e-mail] 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.

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

contributed by Alex Bost, [e-mail]

*** 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. Blood marrow transplant specific sources
===========================================================================

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 [phone].

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