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Archive-name: medicine/transplant-faq/part4

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. 
---------------------------------------------------------------------------

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

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