Oriented to Thoracic Transplant Recipients -- August 1997

The UPBEAT! Archive

PATIENTS THRIVING WITH NEW OLD HEARTS

By Popsy Sadock - Tribune-Review

Like a dependable watch, the heart in Bill Galko's chest just keeps on ticking. It's not his original heart; that one gave up on him ages ago. His new heart came from a 43 year-old man who died of an aneurysm. Had it not been for a new program that allows doctors to use older, sometimes imperfect donor hearts for older, less perfect candidates, neither the heart nor its current user might be around today.

The Export resident was among those accepted for the Expanded Heart Program at the University of Pittsburgh Medical Center in Oakland. Patterned after a program started several years ago in Los Angeles, UPMC's program takes hearts from older donors that might be rejected by other programs and transplants them into patients 65 and older. The cutoff date for heart transplant recipients is generally 65.

The demand exceeds the supply in the search for new hearts for any age group. "The extended donor program is a way to expand the donor pool, which we need so badly," said Dr. Si Pham, director of the UPMC program, which is less than a year old. "Five patients have had the transplant (in Pittsburgh) and are doing extremely well.

"Traditionally, donors of 45 (and older) who have a mediocre medical history, transplant programs turn them down," Pham explained. "These hearts may reasonably have a good function. The only reason they are turned down is because not all hospitals in small cities have the capabilities of sophisticated testing. Older hearts may have certain risks."

If there is a problem with a heart, such as angioplasty, the cardiac surgeons try to correct it. Hence, these donor hearts are sometimes called "retreads" by the patients. "The hearts for transplant, if it had a flaw, they used to throw it away," said Galko. "They give you a catheterization after the transplant now and if there's a problem, they fix it."

Although the hearts still function well, they would be rejected for a younger person with a longer life expectancy, Pham said. "It's a difficult decision, from a philosophical point of view. Ethics enter into it," he said. "At least the donor pool is expanding. We want the public to be aware of the program. We do improve quality of life."

Galko, 67, was put on the "alternate donor list" at UPMC Oct. 17, and received a new heart Feb. 27. His problems started in October 1987, when he had a slight heart attack. After a massive heart attack the next New Year's Day, he had open heart surgery at West Penn Hospital in Bloomfield in March 1988.

Galko began to cut back on his active lifestyle, retiring and selling the roof truss business he owned in Murrysville. Then he began to have problems with angina and was in the hospital nine times from July to October 1996. "More surgery wasn't an option: my heart was too weak," he said. "Dr. Bartley Griffith (UPMC's chief of transplant surgery) told me the only alternative was a heart transplant."

But Galko was 67. "I had heard about an expanded donor pool program for older patients that began in Los Angeles, and were also done in Cleveland, Chicago and Pittsburgh with good results," Galko said. He was judged to be a good candidate for the program, he said, because he worked out regularly and was in good physical condition.

The alternate donor list for designated recipients older than 65 allows for evaluation and potential use of donor hearts deemed unsuitable for younger patients. All Status 1 (most medically urgent) patients of any age have access to the alternate list as well; the older recipients are maintained as Status 2 (medically urgent) to avoid usurping potential donors from younger patients.

The 65-and-over group must undergo even greater scrutiny by a transplant evaluation team and have no major noncardiac related disability.

Disqualification factors include organ damage from diabetes, liver dysfunction or a history of smoking.

While waiting for his new heart. Galko continued to work out, trying to maintain what physical strength he had left. "Everything was well except my heart," he said.

Galko said the six-month wait for a heart was "scary and tedious." "You anticipated every phone call," he said. "Finally ... the call came that they had a heart. The first feeling was like a lightning jolt that it was finally here."

The first heart, though, wasn't the right blood type, so Galko began the wait for a second heart. The call came at 11 p.m. Jan. 11, and he was at Presbyterian University Hospital in Oakland, a UPMC facility, in an hour. "I was all ready, tubes, catheter and on a gurney ready to go into the operating room ... again, the heart was no good and they sent me back home. I was disheartened, to say the least."

But on Feb. 27, a third, healthy heart was found, donated by the family of a 43 year-old man who died from an aneurysm. "The heart fit perfectly, like a glove on a hand," Galko said.

He was home within a week, and was mowing the lawn three weeks later. He still works out three times a week, and his only physical restriction is no heavy lifting.

Aside from an irregular heartbeat, which was treated successfully, and diabetes caused by anti-rejection medication, for which he takes insulin, he has had no problems. "My wife, Doris, she had to learn how to cook for me. She watches me like a hawk. I lost 25 pounds, gained 15 back. Now I have a good appetite, like always," he said.

Donald Miller, 66, of Stanton Heights, described the process leading up to his "retread" heart transplant as "an emotional roller coaster."

"It's a real gift to have someone give you your life back," he said. Three months after receiving his heart, Miller was turkey hunting. As a police detective for the city of Pittsburgh for 38 years, Miller, who is 6 feet tall and 210 pounds, thought he was in good physical shape - until he had a heart attack in '91. His health subsequently deteriorated and he was in and out of Shadyside Hospital often. "I went to my barber one day and he said I didn't look too good. I was panting," he said. "That night I was back in Shadyside again in bad condition. There wasn't much heart function left. I couldn't catch my breath."

Miller recalls being evaluated by Griffith. "He said my options were zero -there was no choice. He gave me the pros and cons of the Expanded Heart Program, said they might use an older heart and I was an older recipient," he said. "Some people told me they wouldn't do it ... they wouldn't go for a transplant. I wasn't like that. I was glad I had a chance to live. I could have been looking' at the grass from the bottom up by now."

Miller was put on Status I and waited for six months in Shadyside Hospital for a heart. Some people don't survive the wait. On Dec. 9, in Presbyterian Hospital, Miller received the heart of a 50-year-old man killed in an automobile accident in West Virginia. "It fit perfectly. No pain afterward. Sedated to the max," he said. "After 14 days, I came home for Christmas with a new heart on my 66th birthday. Talk about being born again."

One setback: Miller contracted cytomegalovirus, a viral heart infection he terms "bad stuff." On intravenous medication for 21 days, he temporarily lost his appetite and his weight dropped by 80 pounds. "But the doctors handle everything with ease," he said. "It's like,' Oh, you have a little problem, eh? We'll sew the buttons back on. Don't worry.'"

Miller said he has no physical restrictions. And he's gotten lots of support from his wife, Audrey, plus his three children and five grandchildren, whose classmates in Catholic school prayed for him twice a day. "Their prayers were answered," Miller said. "And I was glad about that.

"Every day's a gift. I feel I'm age 50 on one side and 66 on the other. Some days I have a twinge or two, but so what'? It goes away. Life is good."

Joe Myers, 63, of Des Moines, Iowa, waited for his heart at Presbyterian Hospital from November to June. His wife, Sandy, stayed at the Holiday Inn University Center in Oakland the entire time, learning what it would take to get her husband back in shape. "We made it," she said uncomplainingly. "and that's what counts." He added with a smile, "But I'm about hospitaled out."

Myers had a heart valve replaced by world-renowned heart surgeon Dr. Michael E. DeBakey in Houston, Texas, Nov. 11. 1973. Twenty-four years later, he suffered from congestive heart failure and cardiomyopathy, an infection of the heart's lining, plus an aortic aneurysm. His cardiologist in Des Moines told him a new heart was his only chance to live. Myers was older than most patients considered for a transplant, but not yet 65. If he waited for a younger heart. he probably wouldn't make it.

He learned about the Expanded Heart Program, which could mean a shorter wait. and opted to come to Pittsburgh in November. Six months later, in April, his aneurysm was removed and he received the heart of a 47-year-old man who died in a car accident.

He, too, recovered from cytomega1ovirus. He was released from the hospital April 27, and returned to Des Moines June 17. "I'm tired, but I'm game to get into therapy," he said. "I never worked out at a gym before, but I'll do whatever it takes. Can you believe what they can do to give you a new life?" Myers is enjoying his back porch in Des Moines, visiting with friends and family. In a phone conversation earlier this month, Sandy Myers said, "Joe's out for a walk. That's something he couldn't do three weeks ago. It's a new life."

NOW HERE'S WHAT TRANSPLANTATION IS ALL ABOUT!

A month or so ago, UpBeat asked for suggestions on how to celebrate the 10th anniversary of one's successful transplantation. There weren't many replies, but here's the one that tells it like it really is, and no party is required!

UpBeat,
Next year I will celebrate my 10th Anniversary of my heart/lung transplant by receiving my Masters of Fine Arts degree in Performing Arts Management.

I have accomplished many things in my life after my operation and found that I can do anything that I want to. I have survived so long because I have a positive attitude, wonderful friends and family, take my medication properly and have a lot of fun with everything I do. Yes, there have been numerous times being in the hospital with rejection or having my lung collapse, but those incidents have not stopped me from pursuing my goals.

I am now 25 years old, my heart and lungs are 9, and we are extremely happy together. I cannot wait until that MFA is in my hands and to prove to myself that once again - Nothing is impossible!

Allison McCartney Sparta, NJ
My anniversary is March 30, 1998.

HELP OF ALL TRANSPLANT RECIPIENTS REQUESTED

American Organ Transplant Association's Executive Director, Ellen Gordon Woodall, and her Executive Assistant, Barbara Haughton, spent several days on Capitol Hill, in Washington, D.C.,, to discuss H.R. 1061, a bill being presented in the House of Representatives. This bill extends Medicare coverage of lifesaving immunosuppressant medications for the life of the organ transplant recipient, from the current three-year limit. These medications must be taken to control rejection of the implanted organ. Without these extremely expensive medications, transplant recipients will most likely die, or in the case of kidney transplants, will lose the new kidney and be put back on expensive dialysis. The benefit of this legislation are much more than life-saving. If this bill is passed, it will be of great savings to Medicare.

Several congressmen personally told Ellen and Barbara that H.R. 1061 can pass if constituents and their families and friends from around the county would write or fax their congressional offices. It was made quite clear that a letter writing campaign would be successful for the passage of this bill.

For more information regarding H.R. 1061 or other organ transplant issues, please contact American Organ Transplant Association, 3335 Cartwright Road, Missouri City, TX 77459. Phone: (281} 261-2982. Fax: (281 } 499-2315.

LETTER TO THE EXECUTIVE DIRECTOR - AOTA Items, June 1997

Dear Ms. Woodall:
Knowing of your interest in organ transplant issues, I am pleased to inform you that I have agreed to co-sponsor legislation to expand Medicare coverage for post transplant immunosuppressive drugs.

This legislation (H.R. 1061) will help ensure that thousands of Medicare patients who have transplants have access to the drugs that help their immune systems accept their new organs. Under current law, Medicare provides coverage for three years following the transplant. However, transplant patients often must take these drugs for the rest of their lives. By repealing the time limit on Medicare coverage for immunosupressive drugs, H.R. 1061 will make an important contribution towards the successful recovery of Medicare patients who undergo transplants.

I hope this information is useful to you. If I may be of further assistance on this or any other matter, please do not hesitate to contact me.
With kindest personal regards. '
Sincerely,
Kenneth E. Bentsen Jr., Member of Congress

Executive Director's Note:
Everyone reading this should obligate themselves to contact their own congressmen and insist they vote favorably for this bill H.R. 1061. It's a matter of our lives and deaths. Ask them also to include coverage for immunosuppressant medication for recipients who are on Medicare, but whose transplant was not covered by Medicare at the time.

PVCS

Seems to me it wasn't long ago that Novartis ne. Sandoz was proclaiming that there was no way Sandimmune would be removed from the market. Well, not quite, from the tone of the following letter, it will be removed when Novartis ceases to reap the dollars it desires from the product. The letter is addressed to Ellen Woodall, Executive Director of American Organ Transplant Association of Missouri City, Texas.

Dear Ms. Woodall:
Regarding a statement for your newsletter about the market availability of Sandimmune, I provide the following information for you to include:

Sandoz wishes to reassure the transplant community that it has no plans at the present time to withdraw Sandimmune from the marketplace. Should a decision be made to withdraw Sandimmune it would be done through close collaboration with the transplant community. Only the use of Neoral and Sandimmune, as well as customer

demand will determine, if, how, when, and under what circumstances Sandimmune should be withdrawn. Although we strongly believe Neoral is a better product than Sandimmune, Sandoz recognizes its responsibilities to the patients and physicians who depend on its products and will not make a decision to withdraw Sandimmune unless the market dictates. Sincerely,
Joanne Machalaba,
Director Sandoz transplant, a division of Novartis Pharmaceuticals

Golly gosh, after all the nice words, "collaboration, responsibilities, reassure" it comes down to "the market dictates." Really there's no argument with such a policy, but just tell it like it really is! Our policy places prices and total dollars before patients every time!


Just not quite sure what happened, but TRIO has quickly moved their annual conference from Chicago to Washington, DC. at the Hilton. Seems to me it' s been there a couple

of times previous. I know of one chapter that was actively involved in chartering a bus to Chicago, and darned if yours truly hadn't completely planned out his train trip. As of August 1, no program of events has been posted.


Speaking of TRIO, wouldn't it be apropos if at their annual conferences they held organ specific "10 years and Up Club" lunches, or whatever. And what about the potential of organ specific pins announcing the fact that the wearer has had a successful organ transplant for more than 10 years? Might just help both the wearer's morale and organ donation.

HEART TRANSPLANT OBSTACLES OVERCOME IN JAPAN

By Yuri Kageyama - AP Writer

TOKYO (AP 6/14/97) -- Performing his country's first heart transplant made him an instant hero. Then it made him a murder suspect.

Nearly 30 years later, Dr. Juro Wada still is cited by Japanese looking for examples of why doctors -- and the establishment in general -- should not be trusted.

His first heart transplant also was Japan's last. And it comes up often in the public debate over whether to rewrite a strict definition of death that results in Japan being the only industrial nation where doctors are unable to obtain viable hearts, livers and lungs for transplant.

When he carried out his Aug. 8, 1968, operation, Wada drew headlines and adulatory comparisons to TV's heroic Dr. Ben Casey. But reactions quickly soured when the patient died 83 days later. A group of herbal doctors demanded a criminal investigation.

While Wada was never charged, the prosecutors' investigation discovered he had kept no records of the heart donor's brain waves, which would have proved the patient was clinically dead when the organ was removed.

A witness said the donor was still breathing on his own at the time the heart was removed. Another doctor said the 18 year-old recipient hadn't really needed a transplant.

After the operation, a section appeared to be missing from the recipient's old heart, and one valve was suspected of being from a totally different heart. That raised suspicions Wada might have tampered with the heart to exaggerate the recipient's ailment.

Wada, now 75, still works as a doctor and denies he did anything wrong. He rarely speaks to the press, but in an interview with The Associated Press he said his only regret was that no other doctor followed his example.

"He was a lovely young man," Wada said of the heart recipient. "He was so happy. The outcome was short, but he had a rich, wonderful life."

Under current Japanese law, death is defined as the moment at which the heart stops beating. At that point, kidneys and corneas are still usable in transplants, but the heart, lungs and liver deteriorate too much.

By contrast, the United States and other countries where transplants are routine define death as the absence of brain activity, which often occurs before the heart stops beating. Machines can keep a body's blood pumping after brain death, thus keeping organs in good condition for transplant.

Legislation to recognize brain death and open the way for transplants failed last year in the Diet, Japan's parliament. This April, the lower house passed a bill that would allow the brain death standard to be used for transplant donors -- provided donors had left written consent for their organs to be used in transplants. But the bill stalled in the upper house.

Now, legislative leaders have worked out a version that would allow family members to overrule a doctor's diagnosis of brain death. The upper house is scheduled to vote on the bill Monday, and if it passes, the lower house would be expected to adopt it before the legislative session ends Wednesday.

But changing the law might not change the transplant situation. Opinion polls say Japan is deeply divided on transplants.

Japanese cultural beliefs about death is one obstacle. Some people think cutting open a corpse or taking away organs hurts a person after death.

But the most pervasive obstacle is a deep-rooted suspicion of the medical establishment.

Traditionally powerless before politicians, bureaucrats, bosses at work and other authority figures, Japanese are nervous about being kept in the dark about dangerous decisions, even if most feel they don't have the right to question their doctors. That fear is especially pronounced when the decisions involve death.

"I think transplants are sometimes a way for surgeons to show off," said a housewife, Eiko Mizuno.

The medical establishment' s reputation was further damaged recently by a scandal involving government health officials and doctors who knowingly used blood products tainted with the AIDS virus, causing the deaths of some 400 hemophiliacs. A prominent doctor, is being tried on criminal negligence charges in that case.

In a recent editorial, the national newspaper Asahi said organ transplants will never be accepted in Japan unless hospitals start practicing "medicine that patients can trust."

Doctors and patients must be on an equal footing, and the informed consent of patients as well as a more open, fair system of treatment must be guaranteed, it said.

Such concepts are alien to many in Japan.

Many doctors refuse to even tell patients when they have cancer or other serious illnesses. Malpractice lawsuits are rare.

Surgeons routinely accept cash gifts from patients, in addition to regular billing. and are believed to award better treatment to those who give the bigger gifts.

"In Japan, doctors are still viewed as way above their patients," said Katsunori Honda, a Tokyo University Hospital doctor.

ORGAN BILL PASSES JAPAN PARLIAMENT

By Yuri Kageyama - AP Writer

Tokyo (AP 6/17/97) -- After years of emotional debate on whether doctors can be entrusted with defining death, Japan's parliament passed a law today to allow heart and other organ transplants in a country where they are virtually banned.

The law, which will take effect in three months, will pave the way for the nation's first heart transplant in nearly 30 years. Japan's only heart transplant, in 1968, resulted in two criminal investigations against the chief surgeon and left the nation one of the few without such operations.

"This is a big step forward for transplants," Health Minister Junichiro Koizumi said in an interview after the voting.

Many remain wary of letting doctors define the moment of death -- which is required when key organs are donated -and that stalled the bill, proposed three years ago.

Cultural beliefs against cutting open corpses, for fear that may hurt the person after death, also have discouraged transplants.

Up to now, hundreds of patients needing heart, lung and other organ transplants have had no choice but to go abroad for the lifesaving operations. Only a handful of patients have been able to afford the trip.

I've been struggling for so many years to get this bill passed, I feel so relieved now." Hiroshi Takamori, a 34-year-old patient awaiting a heart-lung transplant, said in a telephone interview from the central city or' Nagoya.

The main sticking point in the dispute has been Japan's strict definition of death.

Under Japanese law, death comes at the moment when the heart stops beating. At that point, corneas and kidneys can still be used for transplants, but the heart, lung, liver and other organs deteriorate so much they can't be used.

The United States and other nations where organ transplants are routine recognize brain death, in which the brain ceases activity but the heart and other organs can be kept working with machines.

Transplants are not illegal in Japan but those from brain-dead donors are almost never performed.

"Japanese thinking has finally come closer to international standards," said Taro Nakayama, a doctor and lawmaker who proposed the initial bill.

Given the deeply divided public opinion on transplants, Nakayama's bill, which recognized brain death across the board, had to undergo major revisions to win today's 181-62 approval in the upper house and the 323-144 lower house vote.

Under the revised law, brain death will be recognized only for transplants. That means brain-dead people who don' t agree to transplants would still be considered alive and continue to receive treatment.

The law also specifies that transplants be allowed only from donors who have left written consent. Family members will also be able to overrule a doctor's diagnosis of brain death.

Outside the parliament building, about 25 demonstrators, some in wheelchairs, chanted protests against the law.

"We are afraid the law will lead to some people's lives being valued over others," said Norio Koga, a 37-year-old blind acupuncturist and protester.

Surgeons across Japan have been setting up organ networks, readying medical facilities for transplants and passing out organ-donor cards.

The nationwide medical association of surgeons has said a transplant from a braindead donor will be carried out before the year is over.

"The law is the first step toward the birth of a new kind of medicine that requires the participation of the entire society, not just doctors and patients," said Kikuo Nomoto, a doctor and transplant advocate. "It' s epoch-making for Japanese medicine."

GERMAN PARLIAMENT EASES RULES ON ORGAN TRANSPLANTS

Bonn, (Reuters 6/25/97) - Germany's parliament passed a bill on Wednesday that aims to resolve a shortage of organs available for transplant operations by relaxing rules on when physicians may remove body organs from clinically dead patients.

By a vote of 449 to 151, the parliament passed the controversial measure that permits relatives of clinically dead people to sign over the body organs even if the patients had not previously agreed in writing to the donations.

The measure passed after a five-hour debate in the Bundestag and a two-year-long discussion that caused divisions in all the political parties in parliament. There was cross-party voting both in favor and against the bill.

Strongly backed by health minister Horst Seehofer, who has complained of a shortage of donors, the measure was supported by the parliament leader of Chancellor Helmut Kohl's Christian Democrats, Wolfgang Schaeuble, as well as the opposition Social Democrats' parliamentary leader, Rudolf Scharping.

Opponents of the measure urged that the present system be maintained whereby organs could only be harvested from people who had specifically stated their willingness in advance.

HEART TRANSPLANTED INTO II-YEAR-OLD IN INDIA

Madras, India (Reuters 6/16/97) - An 11 year-old boy has undergone a successful heart transplant, becoming India's youngest recipient of a donor heart, hospital officials said Monday.

The Madras Medical Mission said the surgery late Sunday was also significant because the donor' s heart was removed from an accident victim at a distant hospital.

The heart was removed from the accident victim at Apollo Hospitals in Madras, placed in ice and taken 7.5 miles to the Madras Medical Mission's Institute of Cardio Vascular Diseases.

"The donor heart thus was deprived of blood circulation for nearly three hours and 10 minutes," the mission said in a statement, adding that the patient was recovering with no post-operative problems.

It was the fifth heart transplant at the institute, and all previous recipients were leading normal lives, the statement said.

BREAKTHROUGH IN CHILD HEART SURGERY

London, (Reuters 7/25/97) - A cardiac surgeon has pioneered a revolutionary procedure for child heart surgery, the Scottishbased HCI International Medical Center reported on Friday.

Dr. Tony Corno, director of the Center's pediatric cardiac program, has discovered children can endure heart surgery without having their body temperature lowered. Traditionally, heart surgery on the young involves chilling sick and fragile children before operating, a technique known as hypothermia surgery. The problem is that a quarter of children undergoing such surgery suffer serious side effects.

Corno's method, which he calls normothermia, had astonished doctors around the world, HCI, which is located near Glasgow, said. He has performed the technique, operating on children without lowering their body temperatures or slowing metabolism and blood flow, in 60 cases since last year.

"The benefits of the normothermic technique speak for themselves," Corno said. "Although it means we have to work much faster, we are able to avoid the complications which can arise from deliberately chilling and re-heating the child."

Corno, 47, said most of his patients leave the HCI intensive care unit after 24 hours and return home after five to seven days. Under traditional methods, 11 days is more normal.

In addition, fewer children require inotropic drugs to maintain the heart's ability to pump blood after surgery, while complications such as respiratory disorders and blood, liver and kidney difficulties are significantly reduced. All that adds up to a significant reduction in hospitalization costs.

FDA ADVISERS REJECT LASER ANGINA THERAPY

The Washington Post

AP (7/29/97) Government advisers yesterday rejected a revolutionary approach to treating heart angina: a laser treatment that promised to relieve chronic patients' crippling pain by zapping up to 40 tiny holes into the heart.

Some patients clearly showed relief from pain, advisers to the Food and Drug Administration said. But the company seeking approval for the treatment, PLC Medical Systems, had serious deficiencies in its study of the laser, which could even pose a risk to already-sick patients, the scientists said.

"I have a close relative who needs this procedure. There's nothing I'd rather do than approve it," said Robert Califf of Duke University. But be called the data supporting the laser inadequate and troubling, and on a 9 to 2 vote, most of his fellow panel members agreed. At issue was a controversial but long-awaited procedure called transmyocardial revascularization (TMR). By blasting one millimeter holes into the left side of the heart, the procedure theoretically increases blood flow to portions of the muscle that have been severely damaged by advanced heart disease.

In the two-hour operation, doctors slice a four-inch cut between the ribs to insert the laser, and then blast directly into the heart. The outer layers of the heart heal almost immediately but the beating heart forces the laser-made channels to stay open in the interior. The theory is these channels diffuse oxygenated blood into the oxygen-starved tissue and relieve the crippling chest pain known as angina.

About 150,000 Americans have endstage coronary artery disease, which is almost always accompanied by angina.

The laser is intended for those who are not helped by standard medication, including nitroglycerin and other drugs, and who have already exhausted all surgical options such as bypass. Many patients with milder angina receive relief from medicines.

A study of 198 patients found those who received TMR had fewer angina attacks than control patients who took standard medication. For patients followed at least six months after the operation, 65 percent of the TMR recipients had significant angina improvement while drugs helped just 10 percent of the control patients.

Then doctors measured blood flow through the heart. Among TMR patients, 60 percent of those whose angina improved significantly also showed a significant increase in blood diffusion.

But complicating that measurement are suggestions that the holes in the heart do reclose several months after surgery. Several animal studies and a handful of human autopsies have shown holes almost completely reclosed, prompting critics to question if the therapy had done any good or if the mere thought of a helpful surgery had made patients feel better, a phenomenon called the placebo effect.

The FDA is not bound by advisory committee decisions but often follows them. Ed Note: Until something better might become available, this procedure appeared, on the surface at least, to be a viable "last ditch" opportunity for transplant recipients suffering from TCAD.

THE ULTIMATE CHARITY

By DR. TED LISTOKIN

New York University School of Medicine For AP Special Features 5/30/97

Today, eight Americans will die because they did not receive an organ transplant.

Potentially, there are plenty of organs available. The problem is that the majority of Americans do not tell family members that they would like to donate organs if they die suddenly. Since an organ donor card is not legally binding, the family must give physicians permission to procure organs.

For example, a young man we'll call John was killed in a tragic car accident. Because he had told his wife and parents that he wanted to donate organs, his family gave permission to harvest them. John's final act was that of saving the lives of several people. A teen-age boy with a rare heart disease received John's heart and the gift of life. A man who had been born blind saw his children for the first time with John's corneas. A young woman with diabetes was able to come off dialysis because of the transplant of one of John's kidneys. A little girl who was crippled in a car accident was able to walk again after one of John's tendons was transplanted into her knee.

John was only able to help these people because he had made it clear to his family that he wished to donate organs. His organs were harvested only after John was declared legally braindead, despite valiant efforts to save him. Donating organs did not disfigure John's body, nor did it cost any money to his family Although losing John was heart-wrenching, his family was comforted to know they were carrying out his last wish by donating his organs.

If you want to donate your organs, two things must be done. First, fill out an organ donor card and carry it in your wallet. Although it is not a legally binding document, it helps. You can get a card by calling the New York Organ Donor Network at (800) 443-8469. On the card, you may check off a box to give any needed organs or tissues, or you may choose to give only certain organs or tissues.

The second and most important step is telling your family about your decision. Talking about the issue now could make it easier for them to carry out your wish during a painful time.

Right now, 45,000 Americans need transplants, but only 4,500 people donate organs every year. Some policy-makers have proposed a "mandated choice" program in which a person would indicate whether or not they wanted to donate organs after his or her death.

Potential donors would record their choice on a form such as a driver s license or federal tax return. 'this would take the stud difficulty of decision making out of the family's hands. However, there is no such mandate yet

For now, telling your family about your decision to donate or not to donate is the best way to ensure that your wishes are followed.
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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