The first element that tends to get ignored is the quality of the question
and its wording. Not all people interpret the written word the same way. This problem
can especially come to the fore if the creator of the questionnaire attempts to get
both humorous and a bit of a smart-aleck, as someone I know did with this one.
For example, this year we had a question, "In my opinion, a transplant
is merely a medical procedure, as opposed to what some are calling a 'miracle second
chance."' Forty percent answered "Yes" and sixty percent said "No".
But what did they think they meant? No, it's not a miracle second chance, or, yes,
it's a medical procedure. Back to the drawing boards for next year.
Then there were the ,"O.J. what did you think of the jury in the
first trial," questions. One such was, "In general, I feel that UNOS is
properly listing patients and fairly allocating organs that become available."
Ninety percent responded "Yes". Well, I guess they would. After all, they
get in line and did their wait and got their organ, the system had to be fair, if
it wasn't they wouldn't be here, perhaps. Oops, maybe that's the problem with the
question, would those who didn't make it to the operating table answer "Yes"'?
I don't think so.
Additionally. there was a rather major cultural faux-pas in that a
couple of questions used God in a rather off-hand manner. Some respondents just skipped
the question apparently indicating their displeasure. One or two said they don't
believe in God, therefore all such references are irrelevant. I think the one who
best put me in my place. as well as summing up the situation, was the young man who
said in response to "My Tx physician talks directly to God". " I sure
Of course, everyone automatically assumes the document itself and the
results are to be totally confidential. So in the creation thereof, I was very careful
not to include anything that might lead to personal identification. Not an altogether
smart move. With a couple of the questions. It would have helped to at least ask
whether it was a man or woman answering. and perhaps how old the person was. It wasn't
asked, but fortunately a very high percentage put a full return address on the envelope,
so in most cases it was possible to at least scope out the gender of the respondent.
The complete results are given in the tables. Please note that the
numbers don't always add to either the total of questionnaires, due to some questions
being left blank; nor do the percentages always add to precisely 100 due to rounding
on the part of the computer.
Another defect, if indeed it can be thus considered, is the total lack
of a relational data base from this questionnaire. Thus we have no idea whether the
people who worry a lot about their health are newer or more tenured transplants,
male or female, or evenly distributed throughout the population.
The sex situation was not a surprise at all, although in my experience
the vast majority suffer in silence. And again, the survey is lacking in even making
an effort to determine how much of the problem might be age related. One doesn't
find much assistance in the literature, nor in many of the support groups.
It was sort of pleasantly surprising to learn that so many of us are
now floating in the same prednisone addiction boat. If there's one contribution those
of us in the 6 to 10 year Tx tenure group have contributed to the advancement of
the field, it is that as a general rule patients can be successfully weaned from
prednisone provided such action is taken rather early on post-transplant. Those of
us who were kept on it while the transplant medical field debated and considered
the problem came up a bit short.
To learn that almost exactly 25% of recipients feel that their transplant
coordinator is below average is perhaps disturbing. Of course the terminology was
very loose, but it is doubtful that many misunderstood the answers. On the other
hand, in reviewing the comments it is probably very true that some coordinators suffer
from the "in the shoes of" complex, i.e. there is almost never a replacement
coordinator who is quite as good as the one who was there when the transplant took
The 35% of the respondents who said they weren't making any effort
to diet or watch their food intake was quite surprising. It is true that in today's
world "diet" implies a regimen or even a set of rules, and most transplant
recipients are not living under that kind of restrictions. Yet to have 35% appear
to indicate that they are consuming just about what they want in the quantities they
want is almost hopefully a false reading.
44% of us "rarely miss a dose" of our medications. Again,
the wording is hopefully poor. Let's hope the "missing" means a dose taken
late or even out of normal cycle, but not missed completely. I could be very wrong,
but my bet is that almost any recipient can count with one to three fingers the number
of times they totally missed their meds. and in addition remember the exact occasion.
It's blatantly obvious that Sandoz should really spend some time and
money on public relations with their patients. 75% of recipients hold the company
in less than high regard, and fully 55% have strong negative thoughts about the operating
conduct of the firm.
Regarding the more than twice nightly "treading of the path to
relief' the resulting total of "yes'" was almost amazing, but fully expected.
Both men and women commented how "I hate this". This situation certainly
effects quality of sleep, and in many cases for more than just the patient. It is
too bad that some compensating medicinal program has not been developed to alleviate
this lousy problem. Many commented on side effects being "swept under the rug"
when reported to the transplant team. The frequent nocturnal urination syndrome was
probably the first to suffer the broom and is now buried the deepest.
The willingness to accept a xenotransplant if all else were to fail
was expressed positively by 50% of the recipients, which seems to speak well for
the group. Regardless of the immediate future of xenotransplantation, when the situation
is developed enough to permit same, there will be volunteer Tx candidates out there
willing to put their life on the line to improve the future for others in need of
There were many, many comments both in answer to the most distressing
side effects of transplantation, but also to the "one wish" question at
the end. These will be reviewed in a future issue of UpBeat. Many thanks to all who
|TYPE OF TRANSPLANT||AGE OF TRANSPLANT|
|"CYCLO MELTDOWN"||15 YRS.+|
|SANDIMMUNE THEN NEORAL?||ATTEMPT TO WEAN FROM PREDNISONE?|
|FEELINGS ABOUT Tx COORDINATOR||WAS WEANING SUCCESSFUL?|
|WALKS ON H2O||YES|
|CANOES WITH SKILL||NO|
|FEELINGS TOWARD Tx CENTER||HOW OFTEN DO YOU EXERCISE?|
|ON CUTTING EDGE||1 HR. 3X/WEEK|
|TRIES HARDER||WALK 1 HR. 2X/WK.|
|$ BEFORE PATIENT||GOLF OR SHOP|
|HEATED CLINIC||USE REMOTE TV|
|ATTEND CARDIAC REHAB?||DO YOU WORRY ABOUT HEALTH?|
|WOULD YOU ACCEPT RE-Tx?||PERMIT XENO-TRANSPLANT?|
|ARE YOU USING A SPECIAL DIET?||ARE YOU COMPLIANT W/MEDS.?|
|HEARTWISE TO TEE||ALWAYS ON TIME|
|ALMOST HEARTWISE||RARELY MISS DOSE|
|NO, I DON'T DIET!||SKIP SOME|
|IT'S DRUGS FAULT!||I'M ALIVE, AREN'T I?|
|>1 YR. HOW OFTEN BIOPSIED?||>1 YR. HOW OFTEN TO CLINIC?|
|EVERY 3 MOS.||1 / MONTH|
|6 MOS.||1 / 3 MONTHS|
|YEAR||1 / 4 MONTHS|
|YEAR +||2 / YR.|
|NOT AT ALL||1 / YR.|
|1 YR. HOW OFTEN HAVE ANGIOGRAM?||IS U.N.O.S. SYSTEM FAIR?|
|FEELINGS ABOUT Tx PHYSICIAN?||HOW DO YOU FEEL ABOUT SANDOZ?|
|TALKS TO GOD||OWE THEM MY LIFE|
|CAN FAX GOD||VERY ALOOF-BUT OK|
|DOES PRECISE RX'S||WRINGING OUT BIG $|
|NEEDS PRAYERS||INVESTIGATE THEM!|
|IF NEW Tx CENTER FOR YOU?||DO YOU ATTEND SUPPORT GROUP?|
|HOW LONG DO YOU EXPECT TO LIVE?||HOW ARE YOUR FINANCES SINCE Tx?|
|YEAR||NEVER A PROBLEM|
|2 TO 5 YRS.||CONCERN, BUT OK|
|6 TO 10 YRS.||MINIMUM & HURTS|
|11+ YRS.-NORMAL||REAL PROBLEM|
|WOULD ATTEND SUPT GRP. IF THERE?||IS Tx MEDICAL OR MIRACLE?|
|TROUBLED BY EARS RINGING?||WORKING FULL-TIME NOW?|
|SINCE Tx, WORKED FULL-TIME?||DISCONTINUE UPBEAT?|
|OF THOSE WHO STARTED FULL TIME 41% HAVE SINCE STOPPED|
|HOW ARE YOUR MEDS. PAID FOR?|
|COMB. INS., GRANTS|
LONDON (Reuter 1/16/97) - The British government, worried about strange
viruses and other health issues, said Thursday it would ban animal-to-human organ
transplants until scientists knew more about their safety.
It said it would pass laws if necessary to prevent any human trials
of such transplants. known as xenotransplants.
"It is essential that the risks associated with xenotransplantation
are better understood before the technique is used on human patients," Health
Secretary Stephen Dorrell said in a statement.
He said new laws governing xenotransplants would be introduced as soon
"It is the right decision. There are risks, risks which go beyond
the actual patient," Robin Weiss of the Institute of Cancer Research told BBC
Experts say viruses not harmful to the host animal could kill people
-- and would be difficult to screen for. Once infected, a transplant patient could
infect many others.
For instance, the HIV virus that causes AIDS is believed to have originated
in monkeys or apes.
Last year the Nuffield Council on Bioethics, an advisory group made
up of doctors, scientists and other experts, said xenotransplants would be ethically
acceptable if precautions were taken to make sure humans did not risk infection and
animals were not abused.
David Shapiro, executive secretary of the council, said Britain was
probably the first country to make such a move.
"Both in the U.S. and in the U.K. we are gearing ourselves up
for it as we are likely to be the first two countries affected," he said.
"Britain has taken a decision. The United States is still in the
process... The U. K. has got there slightly ahead and there is a serious divide about
thinking on this."
The U.S. Institute of Medicine issued guidelines on possible animal
transplants last fall but has not called for national regulation.
Imutran, a Cambridge-based company that has been leading the development
of animal organs for transplant, said it accepted that further research was needed.
"Extensive research at Imutran is already in progress to investigate
the issues raised in the report, including the important
issue of patient safety," the company, owned by Novartis, said
in a statement.
"It is also important to understand that even when clinical trials
begin, it will be the next century before xenotransplantation could become a routine
procedure. Therefore it is essential to support existing efforts to increase organ
donation," it added.
"It may be that the real hope for the future is with artificial
organs," Dr. Vivienne Nathanson of the British Medical Association's ethics
committee, told the BBC.
Imutran has been breeding pigs that carry human genes. The cells of
their internal organs are coated with human molecules to help stop the recipient's
immune system from rejecting them.
Pigs are popular candidates because they are similar in size to people.
Pig insulin is already used to treat diabetics, and animal heart valves have been
used in heart surgery.
Animal welfare groups have urged that all animal-to-human transplants
be banned. Compassion in World Farming said it feared not only that viruses threatened
people, but that animals would be mistreated.
"Transgenic pigs will be reared in unnatural, sterile conditions,"
it said in a statement. "The track record of farm animal genetic engineering
is one of unfulfilled promises and widespread animal suffering."
TUCSON, Ariz. (AP 1/27/97) -- Researchers who plan to apply this year
for federal approval of an artificial heart are so optimistic that they are moving
the manufacturing plant that makes the devices from Canada to Arizona.
The heart is used only as a temporary device until patients are well
enough to undergo a heart transplant.
Results of the CardloWest artificial heart study have been encouraging
so far, said Richard Smith, a biomedical engineer at the University of Arizona Medical
Center who heads the project under way at five U.S. heart transplant centers.
Smith and others believe the study will convince the U.S. Food and
Drug Administration that the device should be marketed to the busiest heart transplant
centers. It's the only one available that completely replaces a patient's own heart.
"We have the numbers today to go forward with the pre-market approval
application," Smith said. CardioWest plans to submit an application to the FDA
this year for approval. But the application also must show that the system -- including
the heart and equipment to run and monitor it -- can be manufactured.
Moving the manufacturing plant from Vancouver to Tucson is aimed at
making it easier to go commercial. A 6,500 square foot state-of-the-art production
facility is being built in a warehouse about two miles from the university's medical
"The goal is to bring all of this together to meet all the stringent
regulatory requirements for commercialization," Smith said.
The air-powered, two-chambered plastic pump would be used only in situations
where no other artificial heart pump now available will suffice. That could include
patients who already have an artificial valve. or where both left and right ventricles
are in failure.
Preliminary figures show survival rates above 90 percent, which pleases
"It works. It's technology that should be made available."
said Dr. Jack Copeland. chief heart surgeon at the Arizona center.
CardioWest is a nonprofit partnership of University Medical Center
and the University of Utah's Medforte Research Foundation. It brought in consultants
to determine whether to keep the business once government approval is obtained. then
to develop a business model and five-year plan, and finally to design an efficient
plant, Smith said.
The new plant will be able to produce at least l0 to 15 hearts per
month, Smith said. The devices currently cost American centers in the study $32,500
A key goal of the new operation will be to develop a portable driver
that can be worn on a patient's back at home. The consoles now used weigh several
hundred pounds anti are the size of a washing machine.
It's difficult to pinpoint how many artificial hearts would be needed
in a given year. Smith said. "It's a very limited market."
The likeliest customers are some 50 centers in the United States that
perform at least 25 heart transplants annually and have waiting lists of 50 or more
In all, about 125 American medical centers perform some 2,000 heart
transplants annually. Worldwide, only about 3,000 are done each year.
Not all patients to receive an artificial heart implant in the continuing
study have met all criteria. which range from age limits of 18 to 60 to proven right-sided
heart fail ure.
Of 24 patients who have met all criteria. 23 of them, or nearly 96
percent. went on to receive human transplants. And 22 of the 24, or 91.6 percent,
are alive today, Smith said.
The study, which began four years ago. officially includes only the
FDA-authorized U.S. centers in Tucson, Chicago. Pittsburgh. Milwaukee and Salt Lake
In all, there have been 37 implants of the device in the United States
and six in Canada, as well as 44 in Europe -- 87 total worldwide -- since the study
"We could go forward as we stand right now, with the numbers that
we have today. if I had the rest of the package together." Smith said. "The
toughest thing we've accomplished, the clinical side of it."
More than a dozen additional uses of the artificial heart in this country
did not meet all the criteria.
Though research is under way to develop permanently implantable artificial
hearts, Smith said a niche will remain for a total artificial heart like the CardloWest
for years to come. "Until the day you never do another heart transplant ..."
he said. "When you're doing transplants, you need bridges to transplants."
TOKYO (AP 1/30/97) -- Masanori Suzuki says a prayer of gratitude every
night for the kidney transplant he received in the United States 12 years ago.
"It's as though I live with an American I don't even know,"
said Suzuki, 54, one of the few Japanese to have had a transplant operation overseas.
Hundreds of Japanese die each year awaiting heart and liver transplants,
which are routine in the United States but are not done in Japan because of laws
about when death occurs and traditions regarding human remains.
Only one heart transplant has been performed in this country, and that
was 30 years ago. Patients can only get part of a liver from a living donor and hope
it will grow in them. And only 800 kidney transplants are done a year, most from
living donors, compared to more than 10,000 a year in the United States.
For Japanese in need of a heart or liver, the only glimmer of hope
may come from the few organs donated at one of the four U.S. military hospitals in
Japan and transplanted into Japanese patients.
"It could be the breakthrough transplant," said surgeon Hikaru
Matsuda, the spokesman for 4,000 doctors who want to perform more transplant operations
in Japan. "We hope it will get people thinking about why we have to turn to
a foreign country."
In the past two years, at least three Japanese have received transplants
of kidneys and a cornea from U.S. military donors.
The latest American organ donor was a 5-year-old boy who loved "The
Lion King," pizza and his rock collection.
Alex Van Cleave, the son of a naval officer at the Yokosuka base near
Tokyo, died after an accidental fall while going to school four months ago. Two Japanese
youngsters -- one 10 years old, the other 19 -- received his kidneys.
Many surgeons hope the story of little Alex will help win over a skeptical
Japanese public. There are no laws banning transplant operations in Japan, but there
is a big obstacle: the definition of death. In Japan, death is declared after the
heart stops beating. At that point, the heart and liver die quickly and cannot used
in transplants. Doctors elsewhere use machines to keep the heart of brain-dead patients
beating so their organs can be donated, but Japanese doctors often will not sign
death certificates for brain-dead patients.
Doctors also face strong resistance from families who don't want their
loved ones cut open, even though most Japanese are cremated. Autopsies are done in
criminal cases, but are not performed nearly as often in Japan as in the United States.
In addition, Japanese watchdog groups have for years filed complaints
with prosecutors seeking murder charges against doctors who performed transplants.
But none of the complaints have resulted in criminal charges.
Jimmy Jones, a pediatric surgeon at the U.S. Naval Hospital on the
southern island of Okinawa, is working with Japanese doctors to outline procedures
for future American organ donors and Japanese recipients.
"It has been a challenge. It has been fun.
And I think we have made a difference." Jones said. Jones has
already helped coordinate two successful transplants on Okinawa with organs donated
from naval hospitals.
Legislation now before Japan's parliament would clearly define the
rules that doctors should follow in extracting organs from brain-dead patients for
transplant operations. However, a similar bill failed last year and it is not clear
if this new bill has any chance of passing.
Its supporters include Satoru Todo, a professor of surgery at Hokkaido
Medical University. He recently returned to Japan after 13 years at the University
of Pittsburgh, where he performed more than 1.200 liver transplants from brain-dead
"The biggest difference is that the United States is a society
made up by the people. Japanese society is made up by the powers above," Todo
said. explaining his nation's hesitancy on the issue of transplants.
Suzuki, who received an American kidney, is harsher. "There is
no spirit of giving in Japan." he said.
Researchers at the University of Pennsylvania School of Medicine in
Philadelphia detailed what they said was believed to be the first account "of
cotransplantation of a heart and metastatic prostate adenocarcinoma cells" that
resulted in the patient being infected with prostate cancer cells.
The patient received the heart in February, 1994, from a 53-year-old
man who died of a brain hemorrhage. As the heart transplant was underway, doctors
planning to harvest the man's other organs discovered cancer cells in pelvic lymph
"The clinical scenario dictated that the ... heart transplantation
be completed," said
the report, published in this week's Journal of the American Medical
A biopsy 10 months later found a tumor on one of the man's ribs of
the type caused by spreading prostate cancer, although his prostate showed no signs
of the disease. The unidentified patient was still alive at the time the article
"In general, no attempt is made to evaluate solid organ donors
for occult (hidden) malignancies because the cost-benefit ratio is high and because
the delay imposed would make transplant sub optimal or untenable," the study
"This is particularly important for heart transplants, where four
hours is the maximum... time tolerated," it said, adding that in this case the
transplant was essentially completed before the cancer problem was discovered.
50.000. according to annual U.S. figures released Wednesday.
The United Network for Organ Sharing (UNOS), a Richmond. Virginia-based
non-profit organization that oversees U.S. organ allocation and transplants, said
more people had become organ donors but not enough to satisfy the growing demand.
One-year transplant survival has grown steadily, and UNOS has begun
tracking five year survival rates.
The annual report, which reflects survival data through 1994, showed
that 85 percent of people who received a new heart lived through the year. For lung
it was 76 percent, for heart-lung it was 74 percent, and for liver just under 84
For pancreas and kidney transplants, the rate was over 90 percent--
a remarkably high 97.8 percent for people who had received a kidney from a living
Most living donors are relatives but the percentage of non related
donors has edged up, the report said.
For five years, the survival rates ranged from more than 80 percent
for kidney recipients to 41 percent for heart-lung.
The number of transplants increased by 57 percent between 1988 and
1995, to more than 20,000. However, the waiting list lengthened even faster, and
now has more than 50,000 names.
"The good news is that there are more transplants and donors than
ever," said UNOS research director Mary Ellison. "The bad news is that
the number of registrants waiting for organs continues to rise at a much faster rate
than the number of organs available for transplant."
However, efforts to boost the number of minorities becoming donors
seems to be working, reaching its highest level.
"This suggests that efforts to increase donation rates among minority
groups are working," said UNOS president Dr. James Burdick, a kidney transplant
surgeon from Johns Hopkins University in Baltimore.
The bill, which has to be signed by President Fernando Henrique Cardoso
to become law, would allow authorities to use organs from bodies, unless specifically
instructed not to do so on the identity cards or driving licenses of the deceased.
"Brazil suffers from a lack of donors and paperwork that makes
organ-donation complicated," said Sen. Lucio Alcantara, who drew up the bill.
About 60 percent of the 25,000 Brazilians receiving dialysis treatment
for kidney disease could be cured if kidneys were available for transplant operations,
The bill would also require the government to carry out annual campaigns
encouraging families to offer the organs of dead relatives for transplant, he said.
The Order of Brazilian Lawyers (OAB), which consulted Congress on the
bill, was split on the issue, with some members arguing it was an infringement of
But OAB acting president Safe Carneiro, who told a congressional panel
he favored the bill, said the new legislation would save lives and help stamp out
illegal trafficking of organs.
"We have a vast pool of hospital patients who desperately need
organs and face death because some people consider the corpse of their loved ones
sacred," Safe said. "This bill is of the utmost importance."
The youth, 17-month-old Haden Thomas of Tompkinsville, had been waiting
for a transplant from a cadaver for nearly a year and had developed complications
before the 12-hour surgery was performed Tuesday. His father, 38-year-old Lynn Thomas,
remains hospitalized at the University of Pittsburgh Medical Center.
The surgery, known as a living-related pediatric liver transplant,
was the first of its kind performed in Pittsburgh. It has been performed elsewhere
in the United States. Germany and Japan.
Dr. Jorge Reyes, director of the hospital's Pediatric Transplant Program,
says the procedure "gives many patients new hope, since they may no longer have
to wait for a cadaver organ to become available."
Haden Thomas suffered from biliary atresia, a disease that does not
allow bile ducts to properly eliminate bile from the liver, causing the organ to
function improperly or not at all. If untreated, it can be fatal.
Fairview-University Medical Center said Tuesday it gained that distinction
last week with the successful completion of a liver transplant on a 22-month-old
toddler, who received a portion of his father' s liver in a 15-hour operation.
The operation made the hospital the first in the world to have successfully
transplanted kidneys, pancreases, bowels and livers from living, related donors.
Dr. Rainer Gruessner headed the transplant team and says his latest
transplant patient is doing fine.
The child had gone into sudden liver failure a few days before Christmas.
Gruessner said he would have died had the living donor transplant not
"This is an opportunity ... to promise the gift of life to another
human being," Rep. Dave Camp, R-Mich., said Thursday in announcing the new program.
"It's the chance to be a hero."
Camp cosponsored the law when it was proposed in 1995. The bill was
signed last August. The cards :will be included in refund checks mailed out after
Feb. 1 to about 70 million U.S. households.
Because organ donation can only take place with next-of-kin consent,
many people die waiting for transplants because willing donors have not discussed
donation with their families and loved ones, Camp said. Michigan has traditionally
ranked low nationally in organ donation by its residents. Nearly 2,300 state residents
are awaiting organ transplants and eight to 10 people nationwide die each day waiting
Lamar Bass, 9, and Shameika Ashe, 13, received the new organs at the
University of Michigan Medical Center in Ann Arbor.
Relatives of the patients didn't know the same donor was involved until
later- and the surgeons didn't know the children were fourth cousins.
"They were in the operating room at the same time, but we didn't
know they were related," said Dr. Jeffrey Punch, who transplanted a new liver
"It's one of those things that are too amazing to believe."
The families didn't know either until the children were in surgery.
The donor was 12 years old, but hospital spokeswoman Kristen Lidke said no other
information would be released.
Going into Wednesday's transplant, Lamar was in critical condition
with liver failure. He had suffered since birth from biliary atresia, a condition
in which the liver's bile ducts fail to develop.
Shameika was born with a malformed heart.
The children will take medication all their lives to prevent rejection
of the new organs. The kidneys of the donor were also transplanted, Punch said.
Disclaimer: The material in this document has been collected by Don Marshall and friends. If any of the views and opinions expressed here are taken the wrong way, we can be nothing m ore than sorry. New ideas and materials are welcome all the time. As a policy, UpBeat is sent upon request to heart and heart/lung transplant recipients and other interested parties. Donations of $15 per year, or more, from Tx recipients, if not a burden, are vital. From all others t he donation is specifically requested. The date shown after the name on the address label indicates the last time a donation was received. Please make checks payable to Don Marshall, as we cannot afford to become nonprofit. Send materials, letters, or checks to:
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