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

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Archive-name: medicine/transplant-faq/part4

See reader questions & answers on this topic! - Help others by sharing your knowledge
Part 4 of bit.listserv.transplant FAQ

Last revised 11/15/99 by Russel Witte

The items below are copied from TransWeb at University of Michigan,
Department of Surgery.  Many people contribute to TransWeb, but the
principle authors of the material below are Eleanor Jones, Jeff Punch,
Joel Newman, P.J. Geraghty, Alan Leichtman, and Bob Merion.

Longer articles, including first hand accounts from transplant
recipients, links to other data, and the more accessible WWW/html format,
can be obtained by accessing TransWeb through use of a web browser and
the URL address below:
http://www.transweb.org

See Part 1, section II for list of TransWeb contents.

Contents
I. Organ and Tissue Donation: A Gift of Life
         What do I do if I want to donate?
         Top 10 Misconceptions About Organ Donation
II. Ask TransWeb Questions and Answers
III. Frequently Asked Questions
IV. Organizations Promoting Donation

==========================================================================
I. Organ and Tissue Donation: A Gift of Life
==========================================================================

What do I do if I want to donate?
---------------------------------

Talk about it with your family.

The single most important way to "register" as a donor is to "register"
your wishes with your family.

Donor cards, driver's license stickers, and other means may also be used,
but first be sure your next of kin knows your wishes.

In Michigan...

The Transplant Society of Michigan has begun a computerized list of
everyone in the state of Michigan who wants to donate their organs and
tissues, so that upon death their wishes can be immediately known.

Anyone wishing to join the registry should fill out and sign a card and
have two people witness it; then put the business reply card in the mail.
That person's wishes are then recorded in the database; he/she also
receives a card to carry.

So far, over 1,700 people have joined the registry. For cards, please call
the Transplantation Society of Michigan ("Gift of Life") at 1-800-482-4881.

For more information, please read the text of the brochure (below...to come
later).

In New England...

See the New England Organ Bank's site - and print out (and sign) a donor
card.

In other states...

Please call the nationwide donation hotline at the United Network for Organ
Sharing (UNOS) at 1-800-243-6667 (a.k.a. 1-800-24 DONOR) to order a donor
card, locate your local organ procurement organization, or get other
information.
---------------------------------------------------------------------------

Around the World...

Anyone having information on donor cards or the recommended procedures for
expressing your wishes regarding donation in other countries is invited to
write to the transplant webmaster. <egjones@umich.edu>
---------------------------------------------------------------------------

Top 10 Misconceptions About Organ Donation
------------------------------------------

1. I do not want my body mutilated.
      Donated organs are removed surgically, in a routine operation similar
      to gallbladder or appendix removal. Normal funeral arrangements are
      possible.

2. My family would be expected to pay for donating my organs.
      A donor's family is not charged for donation. If a family believes it
      has been billed incorrectly, the family immediately should contact its
      local organ procurement organization.

3. I might want to donate one organ, but I do not want to donate
everything.
      You may specify what organs you want donated. Your wishes will be
      followed.

4. If I am in an accident and the hospital knows that I want to be a donor,
the doctors will not try to save my life.
      The medical team treating you is separate from the transplant team.
      The organ procurement organization (OPO) is not notified until all
      lifesaving efforts have failed and death has been determined. The OPO
      does not notify the transplant team until your family has consented to
      donation.

5. I am not the right age for donation.
      Organs may be donated from someone as young as a newborn. Age limits
      for organ donation no longer exist; however, the general age limit for
      tissue donation is 70.

6. If I donate, I would worry that the recipient and/or the recipient's
family would discover my identity and cause more grief for my family.
      Information about the donor is released by the OPO to the recipients
      only if the family that donated requests that it be provided.

7. My religion does not support donation.
      All organized religions support donation, typically considering it a
      generous act that is the individual's choice.

8. Only heart, liver and kidneys can be transplanted.
      The pancreas, lungs, small and large intestines, and the stomach also
      can be transplanted.

9. Wealthy people are the only people who receive transplants.
      Anyone requiring a transplant is eligible for one. Arrangements can be
      made with the transplant hospital for individuals requiring financial
      assistance.

10. I have a history of medical illness. You would not want my organs or
tissues.
      At the time of death, the OPO will review medical and social histories
      to determine donor suitability on a case-by-case basis.

---------------------------------------------------------------------------
Posted on TransWeb by permission of CORE, the organ procurement
organization for the region of western and central Pennsylvania, West
Virginia, and southern New York (U.S.A.). CORE is the Center for Organ
Recovery and Education, located at 204 Sigma Drive, RIDC Park, Pittsburgh,
PA 15238. Phone: 412-963-6710 (However, please note that general questions
about donation in the U.S. should be directed to UNOS, at 1-800-DONOR24.)
---------------------------------------------------------------------------


==================================
II. Ask TransWeb Questions and Answers
==================================

If you have a question to ask, please access the submission form with a
web browser and the URL below.
http://www.transweb.org/qa/asktw.htm
Contents
1   *  Who is responsible for paying for the care of a donor?
2   *  Life expectancy of liver transplant patients, and can they be weaned
      off meds?
3   *  Spouses as kidney donors
4   *  How many transplant survivors are there in the US?
5   *  How long can donor organs last on life support?
6  *  Are organs allocated based on race?
7   *  What is the life expectancy of kidney/pancreas grafts?
8  *  If someone abuses their body, will they still be given a transplant?
9  *  What is the life expectancy of an LR kidney transplant?
10  *  What are the risks & benefits of kidney-pancreas transplants?
11  *  When can organs be "harvested"?
12  *  Can I sell my kidney?
13  *  Can well-connected people like Mickey Mantle get transplants faster?
14  *  What's the prognosis & treatment of Hep C in liver transplant
patients?
15  *  How long is rejection a concern?
16  *  Success, life expectancy, and preservation of heart transplants
17  *  What is brain death?
18  *  What does a liver transplant cost?
19   Other questions answered on TransWeb

--------------------------------------------------------------------------
1   *  Who is responsible for paying for the care of a donor?

Question:
Suppose a medical staffperson puts someone on life support waiting for
permission from relatives regarding organ donation. At what point does
financial responsibility end for the patient and/or relatives?

Answer:
The patient's family's financial responsibility ends when the person is
declared dead by brain criteria (brain dead). At the time at which this
is documented, the patient is legally dead and the hospital does not bill
the family for any charges incurred thereafter. If the patient becomes an
organ/tissue donor, the organ/tissue procurement organization (OPO) is
billed for the charges incurred during the management of the donor. The
OPO pays those charges according to established Medicare guidelines.

P.J. Geraghty (procurement coordinator), Washington Regional Transplant
Consortium
--------------------------------------------------------------------------
2   *  Life expectancy of liver transplant patients, and can they be weaned
      off meds?

Question:
What is the life expectancy of liver transplant patients?
Has anyone been weaned completely off antirejection medication?

Answer:
No one knows the answer to this question. The longest living survivor was
transplanted in January of 1970, over 25 years ago. Yes, some patients
have been weaned completely off anti-rejection medications under very
special circumstances. Currently no one knows which patients can be
succesfully weaned from antirejection medications and which patients will
develop graft failure and die if weaning immunosuppression is attempted.

Jeff Punch, MD (transplant surgeon), University of Michigan
--------------------------------------------------------------------------

3   *  Spouses as kidney donors

Question:
Recently there has been more interest in spousal donors for kidney
transplants. What are the latest thoughts on this and what are the
statistics, if any, for such a donor transplant ?

Answer:
Fifteen years ago, (before the introduction of cyclosporine) the only
kidney transplants with good success rates were those from a very closely
matched blood relatives. Modern immunosuppression with cyclosporine and
Tacrolimus (FK506) has now improved overall results so much that tissue
matching for kidney transplants is much less important than it used to
be. Currently most transplant centers in the United States are willing to
consider donation by spouses if no volunteer donors that are blood
relations are available. Careful screening is followed to ensure that the
donor can safely donate a kidney. Experience with living donation has
shown that living donors are no more likely than the general population
to develop kidney failure.

The latest statistics were published in the New England Journal of
Medicine on August 10, 1995. Dr. Terasaki reported that in the United
States "three year survival rates were:

      85 percent for kidneys from 368 spouses
      81 percent for kidneys from 129 living unrelated donors who were not
            married to the recipients
      82 percent for kidneys from 3368 parents, and
      70 percent for 43,341 cadaver kidneys."

He concluded that "the graft survival rate is similar to that of
parental-donor kidneys. This high rate of survival is attributed to the
fact that the kidneys were uniformly healthy."(N Engl J Med 1995;333;333-6).


Jeff Punch, MD (transplant surgeon), University of Michigan
--------------------------------------------------------------------------

4   *  How many transplant survivors are there in the US?

Question:
How many transplant survivors are there in the US (by organ or total)?
World-wide?

Answer:
Estimating how many transplant recipients are living at any given moment
is very tricky. The latest estimate -- and this is in no way an exact
figure -- is that there are between 60,000 and 70,000 people living in
the U.S. who have at some time received an organ transplant. About
200,000 transplants have been performed in the U.S. since 1954, but
remember that many recipients have since died (due to graft failure or
other causes). Also, a number of the transplant operations have been
repeat transplants on the same individual (2 or 3 transplants per one
patient). I would not even be able to estimate similar figures worldwide.

Joel Newman, United Network for Organ Sharing
--------------------------------------------------------------------------

5   *  How long can donor organs last on life support?

Question:
How long could a person's organs last on life support until the
organs are deemed unusable?

Answer:
Like so many other things in the transplantation realm, the answer is "it
depends."

Because there are many variables in the management of the brain-injured
patient, it is impossible to give an estimate of how long organs could
last from the time brain death is declared (which is the time after which
it is acceptable to approach a family about organ donation and recovery
of those organs) until the time that the organs are actually removed from
the body.

One question is: when does brain death occur? The outward clinical signs
are not always very obvious. For purposes of brain death declaration,
brain death is said to have occurred when 1) the respiratory system has
stopped working; 2) the cranial nerves are no longer responsive; and/or
3) the brain's blood supply has been interrupted. While we can test for
the absence of all of these, we generally cannot overtly witness the
cessation of reflexes or blood flow. The bottom line is that patients are
often PRONOUNCED brain dead hours or even days after brain death has
actually occurred, simply because no one tests for it or because multiple
tests separated by some time period are required.

Another variable: how well has the patient been maintained? Sometimes,
medical staff will not treat brain-injured patients very aggressively, and
the patients will suffer organ damage. This will lessen the amount of time
available to recover the organs.

SO...the final answer is: it still depends. It can be anywhere from a few
minutes to several days. It depends on how well maintained the donor is
and how quickly brain death is identified and declared.

Hope this answers your question.

P.J. Geraghty, Procurement Coordinator, Washington Regional Transplant
Consortium
--------------------------------------------------------------------------

  6  *  Are organs allocated based on race?

Question:
Are organs allocated based on race?

Answer:

When an organ procurement organization ("OPO") places a person on the
UNOS waiting list race is a part of the information that is collected by
UNOS. They use this information to develop and evaluate allocation
policies and for research purposes. They also collect other information
on the potential recipients such as lab values and the duration of their
illness. Only the donor coordinator knows the organ donor's race until
the follow-up information is submitted to UNOS a month later.

Race does not play a part WHAT SO EVER in the allocation of organs. If a
donor's family stated that they only want their loved one's organs to be
transplanted into a person of a particular race, the OPO would tell them
that they could not guarentee this and would decline to proceed with the
donation under those terms. Every effort would be made to have the family
agree to allocate their loved one's organs by current UNOS policy. UNOS
has made great efforts to ensure a fair allocation system, one that does
not look at a person's heritage, sex, social status, or race.

Steve Emery (organ procurement coordinator), Iowa Statewide Organ
Procurement Organization
--------------------------------------------------------------------------

7   *  What is the life expectancy of kidney/pancreas grafts?

Question:
What is the life expectancy of the kidney and pancreas grafts? Do they
usually both quit at the same time? Is it usually long term rejection or
something else?

Answer:
On average about 75% of pancreas grafts function for at least a year, and
about 50-60% survive five years. When kidney and pancreas transplants are
performed simultaneously the grafts can have rejection together or
separately. The most common long term problem with both kidney and
pancreas transplants is rejection.

Jeff Punch, M.D. (University of Michigan)
--------------------------------------------------------------------------

8  *  If someone abuses their body, will they still be given a transplant?

Question:
I am doing a research paper on transplantation. Can you please answer
these questions?

1. Prior to a transplant, is life-long abuse of the individual organ
considered in the decision-making process?

2. If there is a choice between two patients, one who took care of an
organ, but it fails and the other who abused it, who gets the organ?

Answer:
The answer to both your questions is: NO, whether one's conditions is
self inflicted or not is not considered when allocating organs. Basing
allocation on a judgment of whether one's condition was self-inflicted is
simply not possible. Supposing that it is possible is far too simplistic
a view. Where would the line be drawn between someone that is "worthy" to
receive an organ and someone that had created their own problem and was
therefore not "worthy"?

Show me one adult human being alive that has never done something that
was known to be contrary to their health. Well, one little steak with
fries and lots of salt didn't cause anyone to get high blood pressure and
kidney failure and heart disease, did it? How about eating these foods
once a week; once a night? How about one glass of wine a night? An
occasional binge with the gang? Cigarettes that were smoked in an era
when everyone else smoked? What if someone was "stupid" enough not to
quit their job if it caused them to be exposed to a hazard, like
second-hand smoke? All of these behaviors cause diseases that may be
treatable by transplantation. What about the person that foolishly didn't
adhere to his doctor's advice to have a treatment that may have avoided
the need for a transplant? ("If that guy had only taken his blood
pressure medicines, he wouldn't have gotten kidney failure, therefore we
should withhold a kidney transplant because he is to blame for his
disease.") Is such a person less to blame for their disease than the
person who drank excessive amounts of alcohol when everyone in the room
was doing the same thing? Who is going to define just how much abuse was
permissible? What about the person that "abused" his heart by choosing to
have a job with a high amount of stress? Many occupations are known to be
associated with higher rates of heart failure. Do people in those
occupations deserve a heart transplant when someone who chose to be a
librarian needs the heart as well? What about the person who was abused
by their spouse and dealt with it by drinking alcohol to excess? Are they
not accountable for their disease? It is known that abused people tend to
drink too much. Do we want a medical system that defines exactly how we
have to live in order to be judged worthy of care? Organ transplant is
THE standard of care for chronic liver, kidney, heart and lung failure.

The amount of alcohol necessary to cause liver failure is extremely
variable. It is a misconception to suppose that everyone that has liver
failure from alcohol was a worthless boozing leach on society. Most
alcoholics are genuinely surprised to find out they have liver failure
from too much alcohol because they drink the same amount as their
buddies. Would we be judging them unworthy because of the fact that their
disease was self- inflicted, or because they were too naive to realize
they had a disease? There are people that probably could not drink enough
alcohol to damage their liver if they had to, and there are people that
can get liver disease from 4 drinks a day.

Organs are allocated based on need, fairness, and the likelihood that the
organ will succeed in restoring health. Patients that continue to abuse a
substance are not candidates for transplants. Patients that attend
alcohol rehabilitation, and are able to change their ways, are candidates
to receive a life-saving organ. If we were to hold them accountable for
past mistakes, we would be forced to hold every transplant patient
accountable for their mistakes out of fairness, and this would not be
possible. In general, if a patient does not follow medical advice when
caring for a transplanted organ, they are not a candidate for a
retransplant, whereas those who take care of their organs can rejoin the
list of those waiting if a retransplant is required.

Jeff Punch, MD (University of Michigan)
--------------------------------------------------------------------------

9  *  What is the life expectancy of an LR kidney transplant?

Question:
I had a Kidney transplant in 1989. The Kidney was from my sister. Is
there an expected life to a transplant or is the life range not known?
In other words can one say that a LRD kidney tranplant have an
expected life of 5-10 years or 10 to 15 etc.?

Answer:
Each of us inherits half of our genes from our mother and half from our
father. The genes responsible for immunological reactions to transplanted
organs are close to each other on a single chromosome; so, for the most
part, they are inherited as a single group, called a haplotype. If
siblings recieve the same group of genes from each parent, they are a
two-haplotype (full or complete) match. If they receive one group that is
the same and one group that is different, they are a one-haplotype (half)
match. If both groups of genes are different they are a zero haplotype
match.

In general, two-haplotyped matched living related donor kidney
transplants have a 50% chance of achieving 24 years of function,
one-haplotyped matched living related donor kidney transplants have a 50%
chance of achieving 12 years of function, and cadaver donor kidney
transplants have a 50% chance of achieving 9 years of function (Cecka and
Terasaki, "The UNOS Scientific Renal Transplant Registry", Clinical
Transplants 1993, Paul I Terasaki and JM Cecka, eds., UCLA Tissue Typing
Registry, 1993:1-18). This does not mean, for example, that a
two-haplotype matched living related transplant will function for 25
years and then fail, or that a cadaveric donor transplant will last 9
years and fail. Any individual transplant, if well cared for, may last
much longer.

Alan Leichtman, MD (University of Michigan)
--------------------------------------------------------------------------

10  *  What are the risks & benefits of kidney-pancreas transplants?

Question:
My wife's kidneys are failing and she will have to have a kidney
transplant soon. She is also a diabetic. The subject of a kidney-pancreas
transplant has come up. We are wondering if this is a wise option? What
are the risks? Her diabetes has been under very good control and she is
presently not suffering from any other side effects of diabetes, so this
option seems very attractive.

Answer:
The issue of whether to have a kidney transplant alone, or a combined
kidney pancreas transplant is extremely complex. The decision truly has
to be individualized. Unfortunately I cannot give the kind of individual
counseling your family needs in this forum. However, I would be happy to
mention several issues that should be addressed so that when you talk to
your nephrologists and surgeons you will have some background.

First of all, it is very clear that both kidney transplants and
kidney/pancreas combined (KP) result in longer life expectancy than
dialysis for diabetics. The best results in terms of graft survival
percentage is with a highly matched living donor kidney (usually from a
sibling). The next best results are from a less highly matched living
donor. Another advantage of a living donor kidney transplant is that it
can generally occur sooner, often before dialysis has even begun. The
wait for a KP is generally longer.

Most KP patients will not require insulin as long as the graft is
working. This is a particular advantage for a diabetic that has great
difficulty achieving control of their blood sugar and finds themselves in
the life threatening ranges of too high or too low very often. Another
advantage of a functioning pancreas is the progression of the retinal
disease, the neuropathy, and vascular disease may be slowed (but not
reversed) by a functioning pancreas. These advantages need to be weighed
against the higher rate of complications. These complications include
rejection, infections, the need for reoperation because of failure for
something to heal, dehydration due to the pancreas secretions, and
others.

Use the URL below for Graft and Patient Survival Rates for U.S.
Transplants (from the United Network for Organ Sharing
WWW site). http://www.unos.org/Data/main_default.htm
Jeff Punch, MD (transplant surgeon), University of Michigan
---------
This question is too complex for a brief answer. Pancreas transplantation
is life enhancing; but, unlike other transplants, not necessarily
life-saving or life-prolonging. Therefore, advice varies between
physicians as to the best choice for individual patients (i.e. to receive
a kidney transplant alone vs a combined kidney and pancreas transplant
from the same cadaveric donor vs a kidney transplant first, to be
followed by a pancreas transplant at a later date), and patients with
very similar medical histories may come to different conclusions
concerning the appropriateness of becoming pancreas transplant
recipients. In general, pancreas transplants will protect diabetic
patients who have difficulty detecting hypoglycemia (low blood sugars)
from suffering hypoglycemic seizures and comas. Working pancreas
transplants will also free the diabetic from the necessity of taking
insulin injections and of following a diabetic diet; and may over time
help to stabilize the progression of diabetic retinopathy and neuropathy,
and reduce the risk of the recurrence of diabetic changes in the
transplanted kidney (although these latter benefits are less definitely
proven). On the other hand, pancreas transplantation involves a more
extensive surgery and carries a higher risk of complication. My best
advice is for you and your wife to discuss the appropriateness of her
receiving a pancreas transplant with the physicians and staff of a
transplant program which offers pancreas transplantation as an option.

Alan Leichtman, MD (transplant nephrologist), University of Michigan

--------------------------------------------------------------------------

11  *  When can organs be "harvested"?

Question:
Can an organ be taken after biological death has occurred?
If so, what is the time window? Thank you.

Answer:
There are two basic types of donation: organ donation and tissue donation.
Organs that can be donated are the heart, lungs, liver, kidneys, pancreas,
and small intestine. These can be taken only while the heart is still
beating, when the donor is "brain-dead." Brain death is defined as the
irreversible cessation of all brain and brain stem functions. A brain dead
person is maintained on a ventilator, and because the machine breathes for
him, the donor's heart continues to beat and the organs continue to
receive a blood supply. These organs are cooled with a preservatrive
solution immediately after the heart is stopped in the operating room
during the organ recovery.

Tissues (skin, bone, corneas and heart valves) can be recovered up to 24
hours after the heart has stopped beating.

For more information on this question, please e-mail me at
geraghty@clark.net

P.J. Geraghty, Procurement Coordinator, Washington Regional Transplant
Consortium
--------------------------------------------------------------------------

12  *  Can I sell my kidney?

Question:

Is it legal to sell my own kidney. If so, how do I go about doing it? I
am in need of cash for my family needs.

Answer:
Paid donation is illegal in the United States, Canada, Mexico, and all of
Europe. In India, paid organ donation has been tolerated in the past, but
the government there has passed a resolution intended to eliminate the
practice. To date, no reputable organization pays for human organs
anywhere in the world. Although paid donation may occur in some parts of
the world, the lack of accountability of the unscrupulous individuals
that engage in this practice means that it is an unsafe to either donate
a kidney through such an organization, or purchase a kidney in this way.

Jeff Punch, Transplantation Surgery, University of Michigan
--------------------------------------------------------------------------

13  *  Can well-connected people like Mickey Mantle get transplants faster?

Question:
Is there a possibility that well-connected persons---e.g., Mickey Mantle,
Gov. Casey of PA, or wealthy foreigners---might get to the top of a list
preferentially rather than by medical indications alone?

Answer:
The short answer is : NO.

I take your question to mean "is there a realistic possibility that being
connected affects organ allocation. Of course, the answer to any question
that asks if there is "absolutely any possibility that".... is always,
yes it is possible. Is it possible that both sides of the conflict in
former Yugoslavia will kiss and make up? Well, yes it is possible, but
realistically it won't happen. Is it possible that connections make a
difference in organ allocation? As I said, anything is possible.
Realistically, it does not happen. In the United States it is illegal to
"engage in the commerce of human organs". The organ allocation system is
organized nationally by the United Network for Organ Sharing (UNOS)
charged with the equitable distribution of organs. Factors considered are
time waiting, tissue and blood type matching, size matching, and severity
of illness. The schemes for allocation are different for different
organs.

The case of Mickey Mantle has been covered extensively in the media.
*There is absolutely no evidence that he was not the most ill person in
his region of the country on the day he got his liver transplant.*
According to the allocation system for livers, he has priority over
people waiting longer, just as if he had been waiting longer than others
but they were more ill, they would have priority over him.

The case of Governor Casey was a special situation: he needed both a
heart and a liver. At the time his transplant occurred, there was no
national policy governing multi-organ transplants. The policy governing
multiple organ transplants in the area where he was transplanted placed
these patients at the top of the list. So when he was listed, he was
automatically first. Many multiple organ transplants had been performed
on patients previously. These cases did not make the headlines because
the patients were not famous, but they too were elevated to the top of
the list by virtue of the fact that they required multiple organs. Now
that multi-organ transplants are more common, a national policy covering
multi-organ recipients is in force.

Wealthy foreigners can come to this country and be placed on the
transplant lists if they meet medical criteria, just as they can donate
organs if they are killed while in this country. The priority on the list
is no different for foreigners, they take their place in line with
everyone else. To prevent the influx of non-US citizens from using too
many organs while US citizens are dying, UNOS has a policy that a
transplant center should not do more than 10% of their transplants on
non-citizens. In fact, most centers do far fewer than 10% of their
transplant on foreigners. So foreigners have no way to buy their way to
the top of the list.

We in the world of organ transplantation are very sensitive to the
fairness issue. Organ transplantation is perceived by some as something
that only saves the lives of wealthy old people. The reality couldn't be
farther from the truth. The goal of organ allocation couldn't be more
altruistic: provide organs as fairly as possible for as many as possible
before the patients die. The patients that are more ill have priority
over the ones that aren't as sick.

Unfortunately the perception of inequality keeps some people from
donating their organs. This is tragic. The disease that result in the
need for transplantation recognize no racial economic or geographic
barriers. The allocation scheme is as fair as humans have been able to
make it. Nevertheless, over 3000 people died last year because of a
shortage of life saving organs.

Give the gift of life: be an organ donor.

Jeff Punch MD, Transplant Surgery, University of Michigan
---------------------------------------------------------------------------

14 * What's the prognosis & treatment of Hep C in liver transplant patients?

Question:
What is the prognosis for and treatment of liver transplant recipients with
Hepatitis C? is Interferon B renal toxic? What have been the results of
using Ribivirin for treatment of Hep C generally?

Answer:
In non-transplant patients with hepatitis C, interferon therapy has been
shown to have a fairly good response rate. The biggest two problems are
that the therapy must be taken for a long time (usually at least 26 weeks)
and the patient has to give him/herself injections several times per week.
Unfortunately, only about 25% of patients have a sustained response after
the therapy is stopped. After liver transplantation, interferon's track
record has been even less stellar. There have been no randomized trials
(this is a way of critically evaluating new treatments to see if they
really are better than existing standard therapy). Likewise, ribivarin has
been used only anecdotally after liver transplant. The good news is that
many patients with hepatitis C who receive a liver transplant do extremely
well for many years. By blood testing, almost all show evidence that the
virus is still present and it usually will eventually set up shop in the
transplanted liver, although severe hepatitis with symptoms is the
exception rather than the rule. Long term, the hepatitis certainly may
damage the transplanted liver, but this is unpredictable both in terms of
timing and severity.

Bob Merion, MD (transplant surgeon), University of Michigan
---------------------------------------------------------------------------

15 * Question:
      My good friend just received a heart-lung transplant. How long
      should I worry about the chance of rejection? He got his
      transplant 2 days ago.

Answer:
Since heart-lung recipients are not on immunosuppressive
(antirejection) medications before the transplant, your friend could
face acute rejection anytime until an adequate level of these
medications are attained. This is usually not life threatening and
initially, can be treated with an increase in their immunosuppressive
regimen or steroids.

Jan D. Manzetti, RN, PhD, Coordinator of Cardiothoracic Transplantation,
University of Pittsburgh

-------------------------------------------------------------------------

16 * Question:
      What is the rate of heart tranplant success?
      What is the life expectancy of a successful heart transplant patient?
      What is the length of time and means of preservation of a harvested
heart?

Answer:

1) The success of heart transplantation obviously varies according to risk
factors prior to transplantation. In general the success rate of the
surgery is close to 95% in most centers on the average. Traditional risk
factors include age over 60, patients transplanted who are on a ventilator,
patients with an elevated panel reactive antibody level (antibodies in the
blood to foreign antigens seen rarely), patients who have had a previous
heart transplant, and patients who have high pressures in the pulmonary
(lung) blood vessels. At this time, however, a standard transplant has a
95% or higher chance of being initially successful, and if you survive the
initial 30 days the chances are close to 90% that you will be alive at the
end of the first year.


2) Life expectancy folllowing heart transplant is somewhat harder to
predict because it depends upon a number of factors including age, patient
compliance, immunological match of donor to recipient, and the era in which
you were transplanted. Again average survival, obtained from the UNOS-ISHLT
data base (which by the way can be accessed via the ISHLT home page) is
approximately 60% at 5 years. In other words if 100 people have a heart
transplant, 60% of them will be alive at 5 years. If we just look at the
past 4 to 5 years, however, this number will be closer to 65 to 70%.
Obviously individual programs will have higher or lower rates of survival
depending upon not how good they are, but upon the types of patients they
are willing to accept in their individual programs. Keep in mind that the
average survival of a sick patient with congestive heart failure (again
depending upon how sick they are) is 50% survival at 2 years without a
heart transplant. By the way many centers have patients alive 8 to 10 years
after transplant.

3)Most transplant centers use a cold solution of iced salt water solution
to store a harvested heart in. This gives a comfort level of aproximately 3
to 4 hours of storage after a heart has been removed from a donor. On the
other hand excellent survival has been seen in many centers with hearts
that have been stored for up to 5 to 6 hours.

Bob Kormos, MD (transplant surgeon), University of Pittsburgh

----------------------------------------------------------------------------
-

17 * Question:
      Can you give me a range of cost for a liver transplant? (in the U.S.)

Answer:
The approximate range is $75,000 to $250,000. This is a broad range because
some patients will need prolonged hospitilization after a liver transplant,
while others are home in a week. The cost for an individual patient is
impossible to predict with any certainty.

Jeff Punch, MD (transplant surgeon), University of Michigan

----------------------------------------------------------------------------
--

18 * Question:
     What is brain death?

Answer:
Brain death is defined as the irreversible loss of all functions of the
brain. It can be determined in several ways. First - no electrical activity
in the brain; this is determined by an EEG. Second - no blood flow to the
brain; this is determined by blood flow studies. Third - absence of
function of all parts of the brain - as determined by clinical assessment
(no movement, no response to stimulation, no breathing, no brain reflexes.)

There are several ways in which a person can become brain dead, these
include:

   1. Anoxia caused by drowning, respiratory diseases, or drug overdose.
   2. Ischemia - Blockage of an artery leading to the brain or in the brain,
      heart attack (stoppage of the heart for a period of time), bleeding in
      the brain.
   3. Intracranial hematoma - caused by a head injury (a blow to the head)
      or a ruptured aneurism.
   4. A gunshot wound to the head - causes destruction of brain tissue and
      swelling of the brain.
   5. Intracranial Aneurysm - the ballooning of a blood vessel supplying the
      brain - can cut off blood supply or rupture.
   6. Brain tumors - can destroy brain tissue and increase pressure within
      the brain.

When any of the above occur, they cause swelling of the brain. Because the
brain is enclosed in the skull, it does not have room to swell, thus
pressure within the skull increases (this is "intracranial pressure"). This
can stop blood flow to the brain, killing brain cells and causes herniation
of the brain (pushing the brain outside of its normal space). When brain
cells die, they do not grow back, thus any damage caused is permanent and
irreversable.

Some points to note:

    * A persons' heart can still be beating because of the ventilator and
      medications helping to keep the blood pressure normal.
    * A person who is declared brain dead is legally dead.

In Iowa (and most other states) two physicians must declare a person brain
dead before organ donation can proceed.

Steve Emery (procurement coordinator), Iowa Statewide Organ Procurement
Organization

---------------------------------------------------------------------------
19  Other questions answered on the Ask TransWeb page
     http://www.transweb.org/qa/asktw/asktw_questions.html

    *  Meds prior to kidney transplant
    *  Post-transplant pregnancies: What information is available?
    *  Locating a source of corneas for research
    *  How should gums swollen by cyclosporine be cared for?
    *  Has anyone waited three years for a double lung txp before?
    *  Diet recommendations for ADPKD?
    *  Is it possible for a male to conceive children while taking FK506?
    *  Would discontinuing txp meds help prevent skin cancer?
    *  Can one switch from cyclo to FK506?
    *  How long does it take to recover from kidney donation?
    *  Side effects or concerns about switching from Imuran to CellCept?
    *  What are the indicators for kidney transplant?
    *  Is there any relationship between transplantation and Parkinson's?
    *  How can I reach as many transplant recipients as possible?
    *  What are the real costs of transplants?
    *  Is there an organ transplant newsgroup?
    *  Waiting List Depletion
    *  Are there CRF-related newsgroups?
    *  How can I get money donated for a heart txp?
    *  Can you direct me to a lung txp program?
    *  How long does kidney donation recovery take?
    *  Can I donate if I have Hepatitis C?
    *  When was the first liver transplant?
    *  What are the risks to kidney donors?
    *  Info on news coverage of the 25th anniversary of the first heart
      transplant?
    *  What is the cause and treatment of neuropathic pain after txp?
    *  How do you cope with the stress of waiting on the transplant list?
    *  Where can I find support groups?
    *  Was your transplant worth it?
    *  How long can a liver last ?

=======================================================================
III. Frequently Asked Questions
=======================================================================
Important!

Nothing on this page is medical advice! If you need a transplant, you need
to seek the advice and
care of qualified transplant physicians. This is a general source of
information and only
represents the opinion of each individual contributor.

1. Myth about Organ Donors Not Receiving Good Medical Care
2. Looking for a Transplant Center
3. Does my religion approve of organ donation?
4. A More Technical Explanation of ABO Organ Matching
5. What is chronic rejection? What is being done about it?

1. Myth about Organ Donors Not Receiving Good Medical Care
----------------------------------------------------------

People have told us that they would not carry donor cards because they
thought that, if they were in critical condition, they would not receive
the best care available. They believe that harvesting their organs might be
more important to physicians than keeping them alive.

This is another very unfortunate myth, and is one that is difficult to
convince people is false. In practice, the physician must always look out
for what is best for his or her patient and treat them accordingly. Perhaps
it will help to give a technical explanation of what goes on under these
circumstances:

The situation that produces brain death is one of too much pressure inside
the skull. The skull is hard and cannot expand. When the brain is injured
by a blow, it swells just the way an injured ankle swells. Except the skull
prevents the brain from expanding and therefore causes the pressure inside
it to rise. If the pressure gets so high that blood can no longer get into
the skull and reach the brain -- then brain death is the result. Brain
death can also happen when bleeding occurs inside the brain (a ruptured
aneurysm is a common reason) and the blood has no place to go. Again, since
the skull cannot expand, too much pressure builds up.

The care of patients under these conditions is very standardized. Sometimes
the swelling stops short of the critical point and the patient recovers.
Sometimes the swelling reaches the critical point and the patient dies.
Fortunately for transplant patients, the heart and the other organs may be
fine even though the patient "dies" when the brain is no longer being
perfused. Many times, however, the other organs are injured by attempts to
keep the swelling down in the brain. It is understood by everyone in the
transplant business that some organs may not be useful to us because they
were, in essence, sacrificed in the attempt to save the patient's life.
This is as it should be. In reality, a patient's survival chances are not
affected by their being a potentially useful organ donor. This is the issue
that the people voicing his myth do not understand.

If techniques changed from our current method of treating brain injuries,
there could potentially be a conflict of interest. This is extremely
unlikely from a scientific point of view, however, because we already know
of one possible way to prevent the swelling of the brain from resulting in
a loss of blood flow to the brain: remove the skull. This hideous sounding
treatment has been shown to make no difference at all in the long run:
people that have sustained brain injuries that are going to cause brain
death eventually go on to die, while the people that were going to survive
with conventional management survive as they would have anyway.

If anything, it is more common that heroic, extraordinary means are used to
keep the patient's heart beating, so that they can potentially donate
organs when patient's life is clearly not salvageable. Brain dead is dead.
In reality, you must be "more dead" to be brain dead than is necessary to
be declared dead. As weird as this sounds, you are officially dead when a
licensed physician declares you dead -- you are brain dead when a complex
set of conditions are satisfied that vary from state to state and from
hospital to hospital. Commonly, this involves radiological testing to
determine lack of blood flow to the brain, and clinical conditions that
include normal body temperature, normal blood pressure, lack of barbiturate
sedatives in the blood, and more. In many situations, a patient cannot meet
the criteria for brain death -- even though they are in fact dead. In these
cases, the patient is declared dead and that is it. My point is that there
are enough safeguards in the system to prevent any bias from entering into
the care of the patient before they are declared brain dead. In addition,
the teams involved with organ procurement have no role in the care of the
patient until after they are declared dead.

Unfortunately, I have still heard this myth expressed quite often. We need
to work on finding ways of easing the public's concern about the issue.

Jeff Punch
Transplantation Surgery
University of Michigan
jeff.punch@umich.edu

---------------------------------------------------------------------------

2. Looking for a Transplant Center
----------------------------------

When looking for a transplant center, you should realize that many
excellent places exist. Gather all the information you can. Ask for names
of other patients and talk to them. Ask these patients if they know of
unhappy patients, and try to contact them. Transplant patients are
generally willing to talk about their experiences. Ask the transplant
center staff about the waiting times, the patient and graft survival rates,
and the number of transplants done per year. Transplant surgeons are
generally willing to talk about these issues. Look at all these factors as
well as your own convenience. Yes, for a "gift of life" the extra added
effort may be worth traveling to a center you like, but don't assume a
distant center is best merely because it is hard to get to.

Also, don't focus TOO much on the numbers: use them not to specifically
rank centers but to rule out places that seem sub-par. You should realize
that a center that does only twenty transplants a year, while it may be an
excellent place, can be devastated by bad luck statistically. Each lost
graft can cut the graft survival down by 5%. If over time, a center
averages three lost grafts a year, but by chance, they lose 5 or 6 grafts
in one year, it may make an excellent center look terrible. The reverse can
happen with very good results from a small center. They may be just one
patient away from having three graft losses in a row, and their above
average statistics will plummet. Also, many times a lower graft survival
just indicates that a particular center does more high risk patients, not
that they are any worse a transplant center. So use survival statistics
with caution and in conjunction with all the rest of the information that
you can find.

Good luck.

Jeff Punch
Transplantation Surgery
University of Michigan
jeff.punch@umich.edu

---------------------------------------------------------------------------

3. Does my religion approve of organ donation?
----------------------------------------------
See also:
http://www.transweb.org/qa/qa_don/religion.htm
An often-heard question when organ donation is being discussed is: "Does my
religion approve?" Recently the New York Regional Transplant Program
published the views of major religion on the subject. Here are those
positions.

AMISH...Approved if there is a definite indication that the health of the
recipient would improve, but reluctant if the outcome is questionable.

BUDDHISM...Donation is a matter of individual conscience.

CATHOLICISM...Transplants are acceptable to the Vatican and donation is
encouraged as an act of charity.

CHRISTIAN SCIENCE...No position, leaving it to the individual.

GREEK ORTHODOX...No objection to procedures that contribute to restoration
of health, but donation of the entire body for experimentation or research
is not consistent with tradition.

HINDUISM...Donation of transplant is a individual decision.

ISLAM...Moslems approve of donation provided the donors consent in writing
in advance and the organs are not stored but are transplanted immediately.
You can also read an article on donation posted at the Islamic Center of
Southern California.

JEHOVAH"S WITNESS...Donation is a matter of individual conscience with
provision that all organs and tissues be completely drained of blood.

JUDAISM...Jews believe that if it is possible to donate an organ to save a
life, it is obligatory to do so. Since restoring sight is considered life
saving, this includes cornea organ transplantation.

PROTESTANTISM...Encourage and endorse organ donation.

MORMON...Donation of transplants is an individual decision.

QUAKER...Donation or transplants is an individual decision.

So while there are variations in specific views, it is clear that major
religions of the world do in FACT PERMIT, ALLOW and SUPPORT transplantation
and organ donation. I am passing this information to all on the subscribers
of the net in hope that it will aid you in your discussions with friends on
the importance of organ donations.

Stan Simbal
slats@j51.com

---------------------------------------------------------------------------

4. A More Technical Explanation of ABO Organ Matching
-----------------------------------------------------

In the case of liver, heart and lung transplants no 'matching' is done
except for blood group (O,A,B,AB) and organ size. An O organ can be used in
an O, A, B, or AB patient, whereas, an O patient can only receive an O
organ. The reason it works this way is because cells have proteins for the
blood group on their surface such that:

    * AB patients have both A and B proteins
    * A patients have A but not B protein
    * B patients have B but not A
    * O patients have neither protein.

If a patient lacks particular proteins, they develop antibodies to the ones
they are lacking (the reason for this is unclear):

    * AB patients develop no antibodies
    * A patients develop antibodies against B
    * B patients develop antibodies against A
    * O patients develop antibodies against A and B proteins.

Now in practice, if a patient has a transplant with an organ that has
proteins on it (say an A organ that has A proteins on it) and that patient
already has antibodies against that protein (say a B patient that naturally
has antibodies against A proteins) the organ will fail very quickly (within
minutes). So if the B patient gets transplanted with an A kidney, it will
not function and be promptly rejected (by antibodies against B protein).
This makes O a universal donor and AB a universal recipient.

For reasons of fairness, organs are allocated primarily to their own blood
group. Otherwise, the O patients would only have access to a fraction of
the organs, while AB patients would have access to all organs.
Nevertheless, there are some inequities in the waiting times on particular
blood group lists.

Finally, what I have just explained does not seem to make much of a
difference in the case of liver transplants; the reason for this is
unclear. In other words it is known that one can use "blood group
incompatible" livers (an A liver in a B patient) with success rates almost
as good as blood group identical livers. We still use blood group identical
livers when at all possible because the success rate is higher overall. The
allocation schemes for organs takes these principles into account.

Jeff Punch
Transplantation Surgery
University of Michigan
jeff.punch@umich.edu

---------------------------------------------------------------------------

5. What is chronic rejection? What is being done about it?
----------------------------------------------------------

There are three general forms of rejection: hyperacute, acute, and chronic.
"Hyperacute" rejection occurs within minutes of transplantation due to
antibodies in the organ recipients blood stream that react with the new
organ and result in organ failure within the first hours after
transplantation. The kidney and heart are most susceptible to this problem,
the liver is relatively resistant. Hyperacute rejection has not been
sufficiently studied in pancreas or lung transplantation. Cross matches are
done between a particular kidney and a potential recipient of that kidney
to decrease the likelihood that hyperacute rejection will occur. "Acute"
rejection generally occurs in the first 6 to 12 months after
transplantation. Lymphocytes from the thymus (t-cells) are blamed for
causing acute rejection. For most organs, the only way to show
unequivocally that rejection is occurring is by biopsy of that organ. For
practical reason, however, biopsies are not always done when acute
rejection is suspected. In some circumstances treatment for rejection is
begun and a biopsy is performed at a later date if the organ doesn't seem
to be improving. This strategy varies from organ to organ and transplant
center to transplant center. The diagnosis and treatment of acute rejection
can be extremely difficult at times.

Chronic rejection is less well defined than either hyperacute or acute
rejection. It is probably caused by multiple factors: antibodies as well as
lymphocytes. The definitive diagnosis of chronic rejection is again
generally made by biopsy of the organ in question. The heart is an
exception to this generalization: chronic rejection in heart grafts is felt
to be manifest by accelerated graft atherosclerosis. In other words, the
transplanted heart rapidly develops "hardening of the arteries". Kidneys
with chronic rejection have fibrosis (scarring) and damage to the
microscopic blood vessels in the substance of the kidney. Livers with
chronic rejection have a decreased number of bile ducts on biopsy. This is
referred to as the "vanishing bile duct syndrome". Transplanted lungs with
chronic rejection are said to have "bronchiolitis obilterans" a scarring
problem in the substance of the lung.

To date, most research has focused on graft survival for the first three
years. It is not that we, the physicians involved with transplantation,
don't care about long term results. The long term problem is simply tough
to tackle. Animal models exist but they do not perfectly reflect what goes
on in humans. Most studies on people that look at long term outcome are not
well "controlled", so their conclusions are nebulous. To be "controlled" a
study needs to have two groups of patients, one that received a particular
treatment and one that didn't. The best kind of controlled study is
prospective and randomized, meaning the decision as to which treatment the
patient has is decided before the treatment begins in a random fashion.
This eliminates many biases that otherwise appear. Theses studies take very
long time periods, are extremely difficult and labor intensive and require
large numbers of patients to look at long term results. More typically,
studies use "historical controls" meaning that one group, say patients
transplanted from 1987 to 1990 is compared to another group of patients
transplanted at a different time point, like 1984 to 1986. The problem with
such studies is that so many things changed between the two groups.
Techniques change: better perfusion solutions for the organs, quicker, more
accurate methods of measuring blood levels of cyclosporine ("Sandimmune").
New agents, like FK506 (tacrolimus or "Prograf") are introduced and other
agents are removed from the market. Understanding of common infections in
transplant patients improves; this improves overall results even though the
improvement wasn't exactly related to what immunosuppression they received.
The studies therefore get muddled over the years. To look at ten year
results today we have to look at transplants that were done in 1985 when
techniques were significantly different in many ways from the way we do
things now. So the bottom line is that much of what we do today is not
firmly based on actual evidence that it is the one best treatment. This
explains why different transplant centers do different things: their
particular experience has been biased by the particular patient population.


Fortunately, much work is currently being done on chronic rejection, both
in the lab and clinically. Some new agents not yet in use clinically look
to be particularly effective at combating chronic rejection. As these new
drugs appear long term graft survival will hopefully increase. In many
situations, the current standard treatment for chronic rejection is
retransplantation. This approach is not satisfactory, however, because it
makes the existing organ shortage worse, and retransplantation is more
difficult from a surgical perspective.

Jeff Punch
Transplant Surgery
University of Michigan
jeff.punch@umich.edu
---------------------------------------------------------------------------

========================================================================
IV. Organizations Promoting Donation
========================================================================
(See also Part 2)

                        The Mickey Mantle Foundation

Mickey's Team

               Get your free Mantle Foundation donor card now!
                   Call 1-800-422-9567 or 1-800-477-MICK or
                    Email transplant.webmaster@umich.edu

                             Be sure to include:
your name, complete mailing address, and the number of cards you would like
                                 (limit 5).

Mickey's personal message to each of us, printed on the Mickey's Team
donation cards, reads as follows:

      "The best gift I ever got was on June 8, 1995 when an organ donor
      gave me and five other patients at Baylor University Medical
      Center in Dallas the organs we needed to live. I guess you could
      say I got another time at bat.

      "Now I want to give something back. I can do that first by
      telling kids and parents to take care of their bodies. Don't
      drink or do drugs. Your health is the main thing you've got, so
      don't blow it.

      "Second, think hard about being an organ and tissue donor if the
      time ever comes. Sign this card, carry it with you, and let your
      family know how you feel.

      "Thanks for your prayers and kindness. I'll never be able to make
      up all I owe God and the American people. But if you will join me
      in supporting the cause of organ and tissue donation, it would be
      a great start."


Track star Carl Lewis writes about Mickey's Team
---------------------------------------------------------------------------

About the Mantle Foundation

Background:

Given a few precious extra weeks of life because of a liver transplant,
Mickey Mantle will be remembered for something more than his heroic
baseball career. This baseball great, considered a hero by many, was
overwhelmed by the selfless gift of a liver from a stranger. Learning of
the critical need for organ and tissue donation, Mickey became determined
to give something back at the end of his life. He directed that The Mickey
Mantle Foundation be established to promote organ and tissue donation.
Mickey had expected to lead Mickey's Team to the complete elimination of
deaths due to the shortge of organs and tissue, but this was not to be. Our
challenge is to make his dream come true.

Assessment:

The critical shortage of organ and tissue donors results from the American
public's being uninformed about the critical need, as well as the process,
of donation. The decision to be a donor is difficult for many Americans.
However, we believe that the American public will embrace organ and tissue
donation if the decision-making opportunity and the information is made
more readily available. Accessability and education are the keys.

The Mission:

Our initial mission is the complete elimination of the loss of life or the
loss of quality of life due to the lack of organs and tissue available for
transplantation.

The Plan:

We will work in concert with professionals in the donation and
transplantation community to accomplish this mission. Our strategy -
continuous public distribution of information relevant to organ and tissue
donation, along with the distribution of millions of donor cards. Mickey's
Team will be comprised of many from all walks of life. We must have those
with the financial tools, the media tools, the educational tools, and the
medical tools on this team! Our message will be factual, inspirational, and
educational. We must capture the minds and hearts of our fellow Americans.
We must make it easier for families and loved ones to make this important
decision during times of good health and clear thinking. We believe the
American people will say "yes!" to organ and tissue donation - Let's give
them the opportunity to join Mickey's Team.

      The Mickey Mantle Foundation
      8080 N. Central Expressway, Suite 800
      Dallas, Texas 75206-1887

      Phone 800-477-MICK (6425) or (214) 891-8890
      Fax (214) 691-0418
---------------------------------------------------------------------------

Other pages about Mickey Mantle

* "Memories of Mickey", a multimedia gallery at ESPNET SportsZone
* Mantle Memorial at the official National Baseball Hall of Fame and Museum
page
*  Steven Louie's unofficial New York Yankees home page, with a page about
Mickey Mantle's stats
* Two fans' tribute pages: Maggie's and Michael Meister's.


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.

To contact the Coalition, please write to:

      Coalition on Donation
      1100 Boulders Parkway, Suite 500
      P.O. Box 13770
      Richmond, VA 23225-8770

      or call 1 - 800 - 355 - SHARE (7427)
      FAX: 804-330-8593

Local Coalitions on Donation

(listed in alphbetical order by state)
---------------------------------------------------------------------------
Alabama Coalition for Organ and Tissue Donation

Chuck Patrick
205-731-9200
---------------------------------------------------------------------------
Alaska Donor Program

Tracy O'Connell
907-562-5433
---------------------------------------------------------------------------
Arizona Coalition on Donation

Bob Miller
602-274-1035
---------------------------------------------------------------------------
Donation for Life (CA)

Carolyn Berry
415-837-5888
---------------------------------------------------------------------------
San Diego Coalition on Donation

Jim Cutler
619-294-6263
---------------------------------------------------------------------------
Southern California Coalition on Donation

Gloria Bohrer
619-756-3136
---------------------------------------------------------------------------
Transplant Council of the Rockies

Pat Brewster
303-337-3100
---------------------------------------------------------------------------
Connecticut Coalition for Organ & Tissue Donation

Molly Sherman
203-232-6054
---------------------------------------------------------------------------
MidAtlantic Coalition on Donation (DC, MD, VA)

Irelisse Fontanez
703-641-0100
---------------------------------------------------------------------------
Georgia Coalition on Donation

Tina Cone-Roland
404-266-8884
---------------------------------------------------------------------------
Hawaii Coalition on Donation

Maryann Mazzola
808-599-7630
---------------------------------------------------------------------------
Idaho Donor Network

Alex McDonald
801 -521 - 1755
---------------------------------------------------------------------------
Illinois Coalition on Donation

Jerry Anderson
312-431 -3600
---------------------------------------------------------------------------
IN-TOUCH (IN)

Stan Meadows
317-685-0389
---------------------------------------------------------------------------
Iowa LifeGift Committee

Reginald Morrow
319-337-7515
---------------------------------------------------------------------------
Coalition on Donation (KY)

Jenny Miller
606-278-3492
---------------------------------------------------------------------------
New England Coalition on Donation (MA, ME, NH, RH, VT)

Betsey Strock
617-244-8000
---------------------------------------------------------------------------
Michigan Coalition on Donation

Marilyn Lindenauer
313-764-3262
---------------------------------------------------------------------------
Upper Midwest Coalition on Donation (MN, ND, SD)

Wendy Muilenburg
612-623-4757
---------------------------------------------------------------------------
Ohio Transplant Recovery Council

Sue Janssen
216-791-9700
---------------------------------------------------------------------------
Donor Awareness Coalition (TX)

Nancy Johnson
214-879-6210
--------------------------------------------------------------------------
Oklahoma Donor Coalition

Phil Van Stavern
800-241 -4483
---------------------------------------------------------------------------
Oregon Donor Program

Mary Jane Hunt
503-494-7888
---------------------------------------------------------------------------
Partners for Life

Pat Kail
412-963-3550
---------------------------------------------------------------------------
Coalition on Donation (PA)

Kevin Sparkman
215-543-6391
---------------------------------------------------------------------------
Mid-America Coalition on Donation (MO)

Barry Freedman
3l4-99l-l66l
---------------------------------------------------------------------------
Organ and Tissue Donor Task Force of Nebraska, Inc.

Jane Taylor
402-572-3540
---------------------------------------------------------------------------
New Mexico Coalition on Donation

Maria Sanders
505-843-7672
---------------------------------------------------------------------------
Council for Organ and Tissue Donation (NY)

Barbara Bianchi
716-275-9157
---------------------------------------------------------------------------
Greater New York Coalition on Donation

Noel Mick
212-980-6700
---------------------------------------------------------------------------
Matter of Life Consortium (NC)

Jim Hunter
704-355-5620
---------------------------------------------------------------------------
Houston Coalition on Donation

Kent Guida
713-523-4438
---------------------------------------------------------------------------
Vital Alliance (TX)

Jim Hayes
210-614-7030
---------------------------------------------------------------------------
Utah Coalition for Organ, Eye and Tissue Donation

Alex McDonald
801-521-1755
---------------------------------------------------------------------------
Virginia Coalition on Donation

Barbara Bingham
804-786-6970
---------------------------------------------------------------------------
Northwest Donor Program (WA)

Mark Hatfield
206-889-8433
---------------------------------------------------------------------------
Inland Northwest Coalition on Donation

Candy Wells-Zabawa
509-455-3131
---------------------------------------------------------------------------


The Wendy Marx Foundation
-------------------------

The Wendy Marx Foundation for Organ Donor Awareness, an all volunteer
not-for-profit organization, was established in 1990 with a single
purpose: to increase public awareness of the need for organ and tissue
donation. In the United States, there is a desperate need for such
donations. Each day, eight Americans die waiting for an organ transplant,
and thousands of others wait for an available organ.

The story of the Wendy Marx Foundation begins with the story of Wendy
Marx,
(http://www.transweb.org/people/recips/experien/living_proof.html)
a native of Rye Brook, NY, and a graduate of Duke University, now
residing in San Francisco. In late 1989, when Wendy was 22, she was hit
with a severe case of viral hepatitis B, which destroyed her liver. Her
life was saved by a liver transplant. The Marx family, joined by family
friend and Olympic champion Carl Lewis, have been committed to the
Foundation and its cause ever since.

To date, Foundation accomplishments include support of the U.S.
Transplant Games; funding of a medical fellowship for doctors who want to
learn more about organ donation and transplantation; development of the
U.S. Sports Council on Organ Donation, which includes athletes, sports
journalists and collegiate and professional coaches; creation of a
Dribblin' for Donors program with Louisiana State University and Coach
Dale Brown; and the production and distribution of a video on organ donor
awareness targeting junior high school students and their families.

To contact us, please write to:

      The Wendy Marx Foundation
      322 South Caroline SE, Suite 201
      Washington, DC 20003

You can also e-mail Wendy Marx at WEMarx@aol.com.



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