What is the current wisdom on such transplants?  How "successful" are
they?  How "ill" do you need to be to profit?  Can they create more
problems than they solve (immune system, etc.)?  Would someone with
extrinsic asthma + emphysema, but still functioning relatively well,
and otherwise in excellent health, be a candidate?  Can someone point
me to relevant literature?  Many thanks.

--
-----------------------------------------------------------------------
Ted Grusec - Communications Research Centre (CRC), Ottawa, Ont., Canada

Its always a shock to me when questions like this about organ transplants
pop up because of what it says of public knowledge about a lifesaving
procedure that REQUIRES their understanding and participation.  Unfortunately,
it doesn't have that, not until they, or a loved one, needs a transplant that
is.  

The fact is, for no particularly good reason, the general population is not
allowing for the donation of most organs.  The primary reason, like the
author of the post above, is that they do not really understand that there is
a severe shortage of people allowing donation.  

It doesn't take a rocket scientist to figure out that in such a situation
only the critically ill and dieing are going to be put on the waiting list
for an organ transplant.  Actually, it has never been different.  The
procedure has moved from purely experimental, performed only on the most life
threatened, to an accepted surgical procedure with an approximately 75% 5 year
survival rate (with good quality of life).  Yet there are so few organs to
transplant that only a fraction of the patients on the waiting list will
ever receive their chance.  Organ transplantation is performed when all else
has failed, in other words, only when you are dieing.  But being put on the
waiting list under such circumstances is far from being hopeful.

The most shocking thing about this is that it doesn't have to be this way.
Good estimates show that the numbers of potential cadaveric donors is roughly
equal to the number of people on the waiting list.  This would, of course,
still exclude from consideration anyone who actually did not need a
transplant.

If you'd like to see how bad the situation is, take a look at the tables of
statistics at the end of the UNOS Update issue I'm now posting.  Pages 45
and 46, if memory serves.

Mike Holloway

You're using the word "fact" rather loosely, IMHO.  I doubt anyone can
determine the actual motivation of the "general public", but there is a
perfectly good reason, in my view, for not signing a donor card. It is
because the behaviour of the medical profession in North America does
not warrant such trust. Donors tend to be young and poor, recipients
tend to be old and well-to-do.  And, presumably, transplant surgeons are
generally higher in the  medical hierarchy (not to mention the socio-
economic pyramid) than the emergency doctors treating the donors.  The
potential for abuse is enormous, and the medical profession's track
record in policing itself is less than illustrious.

                      Box 20033, Cornwall Ctr.
                             Regina, SK
                           Canada S4P 4J7

Well, it seems that I haven't even begun to be shocked.  In truth though, I
have seen this kind of irrational fear displayed before.  Irrational because
it ignores easily obtainable facts and hurts only innocents and not the
stated target (usually doctors).  The facts are that the public attitude
toward organ donation and their reasons for not allowing next-of-kin
cadaveric organ donation are of great interest to the families, friends and
professionals who must sit and watch thousands die because some people just
get their kicks out of spreading urban legends.  Enough redundant surveys
have been done, thank you.  Yes, we do know.  If you'd like the references
so that you can run right out and study up on it, I'd be happy to post
them.

The psychology of this attitude is a life-or-death issue for tens of thousands
of people.  Your answer to the next questions might actually be useful.  By
publicly speaking out against organ donation do you intend to hurt anyone?
Do you believe that speaking out against organ donation will hurt the
medical profession?  Why?  Rational inspection would, of course, show that
your statements don't hurt any medical professionals at all, just patients -
patients with no other hope for life but through an organ transplant.

This is the most tragic part, not just because it is obviously wrong, but
because it clearly shows the poster's intent to cause harm.  Below, for
anyone who might actually be interested in knowing, I've
copied a table of age statistics from the June issue of UNOS Update.
It also doesn't take a rocket scientist to realize that the terminal illnesses
that leave organ transplantation as the only hope do not recognize race or
financial position.

It might be
interesting to arrange for this misanthrope to meet some children on the
waiting list and capture it on film as he tells them that they do not
deserve a chance at life.  It wouldn't be worth the stress on children of
course, but maybe we can get some {*filter*}s to volunteer.
The tragic truth though is that his attitude is common.  This criminal
ignorance has to be stopped.  Hard.

                 Patients Waiting for Transplants
Number of Patient Registrations on the National Waiting List - 5/31/93
=======================================================================
BY ORGAN AND AGE WHEN FIRST ENTERED ON WAITING LIST

Number                           Kidney-                  Heart-
Percent         Kidney  Liver  Pancreas  Pancreas  Heart   Lung  Lung   Total

0 - 5 Years         84    282         0         7     69      7    17    466
                  0.36  10.62      0.00      0.82   2.43   3.87  1.58

6 - 10 Years       128     69         0         2     13      3    19    234
                  0.54   2.60      0.00      0.23   0.46   1.66  1.76

11 - 18 Years      685     87         0         0     55     29    68    924
                  2.90   3.28      0.00      0.00   1.93  16.02  6.30

19 - 45 Years   13,308    936       124       747    774    117   478 16,484
                 56.40  35.24     87.32     87.27  27.22  64.64 44.30

46 - 64 Years    8,445  1,145        18      100   1,858     25   489 12,080
                 35.79  43.11     12.68    11.68   65.35  13.81 45.32

65+ Years          947    137         0        0      74      0     8  1,166
                  4.01   5.16      0.00     0.00    2.60   0.00  0.74

Total           23,597  2,656       142      856   2,843    181 1,079 31,354

Note: Some patients are listed with more than one transplant center
(multiple listing), and therefore the number of registrations may be
greater than the actual number of patients.

Michael Holloway
--
Michael Holloway

phone: (516)444-3090

Please do. Meanwhile, I note that you have a penchant for abusing language,
and also those who disagree with you.

I have not spoken out against organ donation, I merely gave my honest reason
for never signing a donor card.  Name-calling is not much of an argument.

Well, it may be obvious and clear to you, but it certainly isn't to me.

Why talk about hope?  What statistics have you got on the race, financial
position or age of the actual recipients versus the actual donors?

And how good are  the statistics you do have?

Hmmm.  Let me think... What might be a fitting punishment?  Got it!
How about immediate forced donation of all my organs?

I guess the above must be considered a theatrical aside.  So now I am a
"misanthrope" with a "criminal" attitude, and all this just for expressing
fearfulness about giving unknown medical doctors permission to remove my
organs without the consent of my family!  Would I be overextrapolating to
assume you believe doctors should have carte blanche to remove useful organs
from those they consider past saving?  Dare I suggest that you approve of the
highly productive "donor" system of mainland China, where prisoners
are "executed" to order in transplant hospitals when the recipients are
ready to take possession?  Children dying will not destroy the fabric
of society, but {*filter*}ism may.  All your ranting won't change that.

I suggest you take a valium and call a psychiatrist in the morning.

Signing a donor card is a personal decision.  I believe the more
we can educate the need for organ donation the more people will become
donors.  Transplant surgeons are not made aware of a donor until the
family has consented to allow for donation.  Rarely is the donor
in the same hospital as the transplant surgeon.

As for recipients being old and well-to-do; I invite you to attend
our transplant support group and see the ages and
pocketbooks of most of the patients waiting (including myself)
for lung transplants.
I know many transplant patients and one might qualify as well-to-do.

John Flintom

--
   The opinions expressed are not necessarily those of the University of
     North Carolina at Chapel Hill, the Campus Office for Information
        Technology, or the Experimental Bulletin Board Service.
           internet:  laUNChpad.unc.edu or 152.2.22.80

I received this in my mail but this is a public discussion of
vital importance.

No, I'm afraid you're vigorously avoiding MY point.  The only
documented "cultural/m{*filter*}aversion" in the liturature is that of
some southwestern plains American Indians.  Feelings of suspicion
engendered from reading the latest cheap Robin Cook medical
{*filter*} novel do not count as cultural, m{*filter*}or religous
reasons for denying to save someone's life.  I suppose it is
possible that you meant something else. E-mail is supposed to be
spontaneous afterall.

Now, the anonymous poster that I corrected repeated fallacies and
alluded to urgan legends that HAVE been documented to exist among
several minority groups in specific localities.  Perhaps this is
what you meant.  But, like the poster's clearly ridiculous
assertion that the majority of transplants go to the old and rich
(I suppose he would have added "white" if he had stopped to think
about it), these attitudes are tragically wrong.  Tragic because
these minority groups are allowing for the death of people from
within their own groups.  Tissue matching is far more likely
within ethnic and racial groups.  Then there's the often repeated
urban legend of stolen organs and organ black markets.  These can
only be believed by people who haven't the foggiest idea of what
it takes to find a tissue match.  You need two populations,
donors and patients, NOT SINGLE INDIVIDUALS, and a computer
between them.  Spiriting away a single person makes titillating
(and harmful) pulp fiction but is useless for organ
transplantation.

The problem here is ATTITUDE.  There are no cultural barriers to
organ donation.  Let's begin with you.  Why are you so anxious to
elevate urban legends to the level of cultural tradition?

Based on what numbers?  Are you extrapolating into the future?
Based on what and to what end?  The statistics of possible (not
actual) donors and numbers on the waiting list show rough corelation.
Were you aware of this when you wrote your message?

Your statement is misleading.  UNOS and the federal government
are regulating allocation and continue to fine tune the regs (see
the July-August UNOS Update that I uploaded).  Nobody's going to
claim that there aren't problems that need resolving but it was
never the capricious mess that you imply.

Only if nay-sayers volunteer in writing to stand face-to-face with
someone and tell them they do not deserve a chance at life.  This
would be a great way of clearly identifying sociopaths.  I'm only
half kidding.

Here you've clearly failed to make your point.  I've never seen a
more healthy and active example of the "failure" of organ
transplantation.  It's clear, from what's been reported, that
Casey would have soon died without the transplant and that he is
doing very well now.  Obviously, his success shows that his
doctors were correct in making him a candidate.  The rapidity of
finding a match for him has been fertile ground for {*filter*}
imaginings.  Once again, we have the problem of the general
population not understanding the necessity of tissue matching.
When a match is found for a critical patient the organs have to
be transplanted, immediately.  Governor Casey was very lucky.  If
you want to protest THAT you'll have to take it up with God.

Yes, there is.

What wrong do you imagine has been committed? Perhaps you might
even like the little girl if you met her.

Transplant program standards, which includes patient survival, are
maintained by UNOS, and to some degree, Blue Cross/Blue Shield.
The reviews are drawn up by people with MD stamped on the end of
their name.  This is not the medical community?

Once again, we have someone speaking out against the dreaded
scourge of organ donation even while people are dieing for want
of someone letting their deceased next-of-kin's organs do
something other than rot in a grave.  Again, we can see the
common elements of this antisocial behavior.  Vigorous denial
of the fact that people's lives depend on organ donation, and a
hatred of the medical profession that is directed, not at the
doctors, but at the defenseless patients.

Mike Holloway

I'm forwarding this in response and at the request of Dan Flasar.  Anyone in
the dark about organ transplantation, and the need for much greater concern
about organ donation, will find it very informative.  Dan has
started a mail list for transplant patients and anyone else interested in
the topic.  If anyone is interested please write either of us.  The patients
and caregivers in the group have stated that it has been very helpful.

Mike Holloway

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

      My name is Dan Flasar.  I'm a solidly middle class system manager at
Washington U School of Medicine.  I have had 3 kidney trasnplants, and i'm
one of many average citizens of all ages and income levels who have received
an organ transplant.
      My first transplant was from a living-related donor, my maternal aunt,
in 1969.  The procedure, even for such a close match, was still considered
experimental at the time, and was covered by research funding and private
insurance through my father, a union butcher.  The transplant had rejection
problems from  the beginning, but it lasted almost 9 years, giving me time
to get married and have children, take on and keep various jobs and continue
my college education.  Finally, the rejections became too frequent and I
lost the kidney, putting me in the hospital for 4 months with serious graft
vs. host disease.  I wasn't rich, or old in 1969, and I was even less rich,
tho a bit older (28), when I received my second transplant, after waiting a
year on dialysis.
    My second transplant was obtained from someone who died in a car accident.
I was on Social Security SSI while on dialysis and received Medicare benefits
for two years after the transplant, at which time the insurance I obtained
from my job at Washington kicked in.  I have worked there since.  However,
like the first transplant, I had chronic, slow rejection, though none of it
was serious enough to risk bombarding me with stron anti-rejection {*filter*} and
keeping me in the hospital.  This graft lasted 9 years also.  Even during
the final year before I started dialysis, i not only kept my job, but had near
perfect attendence.  This was maintained during the next 4 1/2 years of dial-
ysis while I waited for a suitable kidney.
    During this time, occasionally, a patient would receive a transplant and
they would leave the unit.  We were always very happy to see this.  While
there, a black woman who I had known from 1968 got here first transplant,
because she couldn't find a match.  This woman had spent 20 years on dialysis,
keeping herself as healthy as possible, waiting for that phone to ring.  She
was now in her 50s and she once agains felt 'normal'.  20 years, because there
were not enough organs to provide the kind of tissue type she needed. She was
neither old, nor rich.  She had other problems, including diabetes, which
caused problems with her keeping some kinds of jobs.  Nevertheless, she worked
everyday.
     I saw a young woman, 18 years old, get a transplant w/in 9 months.  She
hadn't even been able to enter the work force. Her bill was entirely paid
for by Medicare.  She had been on welfare because she was unable to work.
She has now finished college and is employed, paying taxes, and has her own
insurance.  Another young woman, just married, was on dialysis for 3 years.
She also had diabetes, and had severe complications. After 3 years on dialysis,
she received a kidney-pancreas transplant.  She is now raising here family
and has been dialysis and insulin free for 4 years.
    There are so many more. I can provide names, if you wish, and stories
as long as you want to hear them.  ALL ages, ALL races, both sexes, any
orientations.  The federal government guarantees that anyone who needs dial-
ysis and a kidney transplant can receive one, and it doesn't matter who you
are, or how much money you have.
    I waited 4 1/2 years, untill 1990, when I received my last trasnplant.  It
has been rock-stable, no signs of rejection whatsoever.  I feel great.  During
dialysis, I actually tripled my salary by applying for and receivin a new
position at Washington U.
     Whoever you are, I'm sure sorry that somewhere in your life, you had some
kind of a bad experience w/ the health care system.  I've had my own, but
obviously, the overwhelming outcome is success and gratitude.
     Claiming that only the rich and the old get transplants is simply false.
And you know this.  I hope that whatever has made you so negative about this
will think about all those people who are still sitting on dialysis, waiting
to get back their energy, waiting to be freed of this burden, or those people
who die, daily, because there are not enough hearts, livers, lungs or pan-
creas available for transplantation.   There is no machine to keep them alive
while a match can be found.  Spreading gossip and ignorance about organ
donation is more than irresponsible, it can{*filter*}out a life.
    Feel free to contact me with any questions you may have about this, or
if you would prefer, and are close to St. Louis, I would be glad to meet
with you and spring for coffee and conversation.
     I can be reached at:

PS:  This friday night, the 30th year reunion of the first transplant per-
formed at Barnes Hospital in St. Louis was held.  The hall was packed, and
the slightly chubby-faced crowd was indistinguishable from any cross-section
of St. Louisans you can  find.

Whatever happened to Netiquette whereby permission is sought before
reprinting Email wholesale?

I would suspect that if you ask the average man on the street,
he would report some squeemishness in donating his organs.  And
this guy is probably not even from the southwest plains.

.<<<rest of one-sided tirade deleted>>>.

You know, I've met anti-{*filter*} lunatics and raving, fiery animal-rights
advocates before, but I've never heard from a organ-donor fanatic;
up till now, I didn't even know there was such a thing.  Almost
enough to make me tear up my organ-donor card.

I'm sorry if this post appears twice.  My first attempt didn't seem
to make it.

Organ donation is a personal choice.  I believe the more we can educate
the public with facts about organ donation, the more people will
become organ donors.

Transplant surgeons aren't even aware of a potential donor until
the consent is given by the next of kin to allow the donation.
Very rarely does a donor (accident victim or whatever) end up in the
same hospital where a transplant would occur.  The transplant
surgeon really has no influence at all in the care a potential
donor.

As for recipients being old and well-to-do; I'd like to invite you to
attend one of our group meetings of the lung transplant support
group at UNC.  We meet every other week.  Most attending the meetings
are people waiting for a transplant (including myself) and a few who
have received a transplant but haven't move home yet.  Most patients are
far from well-to-do.  Many people hold fund raisers to raise money to
relocate to the area.  The ages range from 8 to 60 with most in
their 20's or early 30's.

John Flintom

--
   The opinions expressed are not necessarily those of the University of
     North Carolina at Chapel Hill, the Campus Office for Information
        Technology, or the Experimental Bulletin Board Service.
           internet:  laUNChpad.unc.edu or 152.2.22.80

My abject apologies to this newsgroup for having unleashed several righteous
outbursts by my response to the original poster.  I should have known it
would result in postings without medical or scientific interest.  At least
I have resisted the urge to give lessons in reading and logic to my critics.

                      Box 20033, Cornwall Ctr.
                             Regina, SK
                           Canada S4P 4J7

Nonsense of previous anonymous poster summarized:
------------------------------------------------------------------
Claims that organs are taken without the permission of the next of
kin when no such policy exists in the country of the poster's
address, Canada.

Attempts to link organ donation in this country (and Canada
presumably) to horrible human rights abuses in China.

Claims that recipients are all old and rich and when shown the
stastics, kept by the US administrative agency for organ procurement
and allocation, which show the actual age distribution, he challenges
their authenticity and produces more anti-donation fallacies.

Claims to not speak against organ donation while telling the world
of his "excellent" reasons for refusing to sign an organ donation
card.
-------------------------------------------------------------------

This person obviously isn't looking for a discussion or information.

I want to use the above as an example.  My point is that there
is no comfort in the fact that such trash is not generally
accepted.  So long as the small number of people who spread it are
unchallenged they will keep alive the urban legends that prevent
organ donation from working.  The situation at this moment is in
crisis and strong condemnation is absolutely necessary.  People
are dieing, every day, because someone did not realize the
importance of saying yes when organ donation is requested after the
death of a loved one. As mentioned in the July-August issue of UNOS
Update (posted recently to sci.med), and word-of-mouth from New York
State OPOs (organ procurement organizations), refusals of requests
for donation are actually increasing.  The situation is getting
worse.

The urban legends, lack of organ donor education information, and
the negative use of organ transplantation in popular fiction are
having their predictable effect and even more people die needlessly.
Despite the ready availability of organ donor education information
the trash continues to capture the public's attention because it has
emotional content.  It is not necessary for the next-of-kin of a
potential organ donor to understand, agree with, or even clearly
remember anti-donor trash.  When the time comes for their decision
these people are in severe grief and it's impressions that matter.  
The emotional involvement, the feeling of crisis, that is needed to
make the next-of-kin realize that they, and the deceased, can save a
life, is not being provided.  Organ donor education has got to be
active, not passive, if lives are to be saved.  Incorrect,
irresponsible, thoughtless and selfserving pronouncements damning
organ transplantation have got to be actively condemned in the
strongest possible manner.  Freedom of speech does not extend to
speech that endangers other people's lives.

Mike Holloway

re: organ donation:

I signed my organ donor card in 1979, and have carried it with me ever
since.  My two closest relatives witnessed my signature.  At the time,
I told them: "You don't believe in ghosts, and I don't believe in
ghosts.  But I swear to you, that if you refuse permission to harvest
any usable organs, I *will* haunt you."

Where can you get a donor card?  Most Department of Motor Vehicles
offices carry them, as do hospitals, and various foundations like the
Kidney Foundation, etc.  Do it today, and make your wishes known to
your next of kin.

Kay Klier     Biology Dept     UNI