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Transplants in demand.

TRANSPLANTS IN DEMAND

Jimmy Moore is one of the lucky ones. Three years ago, at age 29, the Easley, South Carolina, resident had a heart transplant. Last October, he finished his fourth triathlon: he swam six-tenths of a mile, rode a bike for 25 miles, and wrapped it up by running 6.2 miles. But this display of exuberant health is not what makes Moor fortunate: he's lucky he has a heart at all.

Today, about 1,200 people are waiting for heart transplants; 30 percent of them have been waiting for more than six months. And 300 of these patients are, in effect, on death row: they'll die without ever having gotten a new heart. "The difference between supply and need is growing dramatically," says Moore's surgeon, William H. Frist, director of the heart transplant program at Vanderbilt University Medical Center and the author of Transplant (Little, Brown). But it doesn't have to be that way, because there are potentially enough organs available. About 25,000 people healthy enough to be organ donors die unexpectedly every year in the United States, most of them in accidents. But fewer than 4,000 become donors of hearts or any other organs.

What makes the heart shortage so acute is the soaring number of transplant operations. Last year, there were 1,647 heart transplants in the United States, up from a pioneering 172 in 1983. "What was once unattainable is now routine," Frist says. And many patients live a long time and lead normal lives. Their one-year mortality rate is below 20 percent, and their ten-year mortality rate is 27 percent, says a study by the International Society for Heart Transplantation.

Typical heart transplant patients are whie, male, and over 4k. Frequently, they're not long-term or chronic sufferers of cardiac disease--but, to qualify, they must be terminal cases. Often they're shocked at the sudden onset of their condition.

Terminal Case

Jimmy Moore certainly was. One day he went to doctor and was diagnosed with the flu. Two days later, still weak and feverish, he went back to the doctor. Flue again. Everybody's got it, he was told. But Moore just got worse. Before long, he was vomiting and listless, barely able to move. This time the doctor did a complete physical. The X-ray told the tale: his heart was so enlarged and dilated that the muscle was weakened and could barely pump. Within two months, he was at Vanderbilt waiting for a new heart. Five weeks later, he had one.

Despite dramatic breakthroughs, the operation and what follows are still an ordeal. For one thing, the immediate postop period is touchy and extremely difficult. Patients have to go through at least a month of physical therapy to recondition muscles that have atrophied during their enforced idleness. During that time, some patients live in a halfway house.

There is also danger when the body tries to reject the heart--something that happens to everyone at least once in the year following implantation, typically in the first three months. Usually there are no symptoms: the problem shows up only through a routine series of cardiac biopsies. The condition is treated with steroids. These drugs, however, weaken the immune system--so that everyday infections, such as colds, can prove fatal.

Heart transplants are not cheap: they average close to $140,000. What's more, first-year follow-up costs, including medication, are more than $20,000. From then on, pharmacy bills top $6,000 a year. The good news, though, is that insurance usually covers the bulk of the costs.

It can be surprisingly hard for patients to convince the rest of the world that they're not sick anymore. Like people who have overcome cancer or mental illness, transplant survivors are treated with kid gloves. Jimmy Moore, for instance, knew better than to try to get his old construction job back. Even a buddy, who runs a volunteer rescue squad, said he didn't want him driving the ambulance anymore. Moore was then turned down for work by the police, a sales merchandising group, and even a used-car dealer. Now he's recruiting new businesses for the Easley (South Carolina) Chamber of Commerce.

Others, however, have eased back into demanding jobs. Of course, it helps when the patient built the company. Take William McGowan, the chairman and CEO of MCI Communications, the long-distance phone company. Knocked out of commission for almost a year after a near-fatal heart attack and subsequent heart transplant, McGowan is again up and running hard--and his company is more profitable than it ever was.

Getting a heart transplant used to depend on how important you were, how much money you had, and whom you knew. Heart transplant "list jumping" was widespread. That all changed in 1984, when the National Organ Transplant Act set up a nationwide computerized system called the United Network for Organ Sharing (UNOS). This system, to which all transplant centers must be connected, matches donors and recipients--based on location, tissue and blood type, body size, and the urgency.

UNOS ironed out some of the kinks, but it did nothing for the bigger challenge of lining up more donors. Nor is the healthcare system doing much to recruit them. All hospitals receiving Medicare funds must have policies mandating that the next of kin of brain-dead patients with healthy organs be asked whether they want the organs donated. But rather than add to the family's distress, doctors and hospital administrators often fail to follow these rules.

Family Affair

All this makes it crucial that people wishing to donate organs tell their relatives. In 42 states, driver's licenses contain check-off boxes for expressing a desire to be a donor. Carrying an organ-donor card or writing a living will can accomplish the same purpose. But whichever way is chosen, organ donating is still not automatic. These documents are taken only as indications of a person's willingness to donate. One's closest relatives will almost always be asked to make the final decision.

For information on organ transplants and donations, call Richmond, virginia-based UNOS 24 hours a day at 800-24-DONOR, or try 804-330-8500 during working hours. Much as people put off drawing up a will, planning for the possibility that you may someday be a donor is unsettling. In the same vein, it's hard to think that someday you may need a donor. Although this may be one of the hardest decisions you'll ever make, it's one that can make the most difference.
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Author:Rothfeder, Jeffrey
Publication:Saturday Evening Post
Date:Nov 1, 1989
Words:1072
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