Dying for a Heart
Ted Segal was racing against the clock. If he didn’t get a transplant in six months, he’d be dead. Any number of surgeons and organ banks in Texas were available to help him, but a wrong turn could kill him as sure as anything.
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The donor’s EKG reading showed that the heart had a ventricular conduction abnormality, similar to a faulty wire in a lamp. Early in his training, Alivizatos had once observed a similar heart transplanted unsuccessfully, and he wasn’t ready to risk a repeat. Scotty was shocked; he had looked the EKG himself and it had seemed fine. But who was he to second-guess a cardiologist? The only real complaint he could make was that the cardiologist had not realized the EKG belonged to a potential donor heart.
Even without talking to the cardiologist directly, Alivizatos could tell that the heart’s abnormality was significant. And if his patient hadn’t been holding steady, his decision might have been different. After talking to Ted and Pat, Alivizatos told the donor coordinator they would pass. A call went immediately to the Texas Heart Institute. The Houston doctors were on their way to Waco in minutes.
Because it is customary for a staff doctor at the donor hospital to assist with the organ harvest, Scotty obligingly scrubbed for surgery and helped the Houston doctors take the heart that he had wanted for his father-in-law. When Scotty checked the next day, the heart had been successfully transplanted, and the 61-year-old recipient was doing just fine.
In Austin, shortly after Ted’s departure from the Seton program, the local organ bank received a call. Another agency had a type B heart, one that UNOS said might work for Ted. The Austin coordinator had to reply that Ted was no longer at Seton. To this day she does not know what became of the type B heart.
Prisoner of the Heart
Ted Segal lay in bed in the back room of his house, thinking about Einstein’s theories of time and relativity and about what it must be like to be a prisoner of war or a hostage in Beirut. Drugs left him without the attention span to read or work crossword puzzles, pastimes that had once been his favorites. Now he watched football on television and dreamed of running along the shores of the Brazos River, in a marathon maybe, with a banner to boost organ donation. When would that cosmic moment of death-that-meant-life come? Would it come at all?
Dr. Alivizatos returned from Greece; Labor Day weekend, another time for drunk drivers, car accidents, and the donor organs, came and went with no new heart. Four months turned into five months.
Pat was spending more time at the grocery store. “Ted completely focused on food, just like an old man,” she says. “What else did he have to look forward to?”
Dena’s baby was due soon. Pat had thought, back in the summer, that Ted would have surgery and be, if not well, then at least regulated on cyclosporine by the time the new grandchild came. Lately, though, Pat had begun to abandon any hope of predictability or control over her life.
Pat had suitcases neatly packed; they were lying side by side in Brad’s old bedroom. Her toiletries were lined up, ready to be scooped into a bag. The checkbook, address book, junk novel, and unpaid hospital bills now totaling close to $30,000 were stacked in another corner of the room, also ready to go. She had gone through trial runs and figured that when the call came, they could be in the car and on the way to Dallas within fifteen minutes.
Communication with the Dallas program was much more sporadic than it had been with the one in Austin. Dr. Alivizatos tended to run a one-man show and had no transplant coordinator at the time Ted was his patient. Ted received a call every two weeks or so, mainly to let him know that no heart had been found. If problems arose in the meantime, he would go to his Waco cardiologist.
Yet Ted kept his faith in Alivizatos. Ted acknowledged that the Austin team had been warmer and more personal, but he also reminded himself that Alivizatos had never lost a transplant patient. He picked the best candidates and the best hearts. If Ted wondered how many of Alivizatos’ patients died waiting for a perfect heart, he never asked aloud.
Worst Fears
The experts say that patients with hearts as sick as Ted Segal’s can feel themselves slipping. “They are so in touch with their bodies and especially their heartbeats that when they begin to die, they know it, and that’s when the panic really grows,” explains Bobby Richards.
Ted knew he was slipping. Tracie knew it too. Her father began to sleep longer and lost his appetite. His voice quavered more than ever, a sign of arrhythmia, and Scotty had warned her that this was an ominous sign.
Tracie had been trying to run Ted’s carpet business. “When I did things wrong—talked to a customer differently than he would or forgot to write in his daily diary or make a deposit—he yelled at me,” she says. One day when he yelled she finally dissolved in tears.
Ted got out of bed and followed Tracie into the next room. He watched her crying and said softly, “You know, when my mother was dying, I was there for her. One day when’ I’m dead you’ll be glad you did this for me.”
The realty of Ted’s weakness enveloped Tracie, but Pat continued to cook for her family, at an almost furious pace. She could not, would not think of Ted dying. A heart would be coming anytime now, she was sure. Tracie observes, “It really bugged Dad that Mom couldn’t talk about it. But how could I say, ‘Mom, Dad’s dying. Why don’t you talk about it?’ We all hoped he’d get a heart soon. Mom was still totally optimistic.”
But Halloween passed with no heart, and things in the Segal home went from tense to foreboding. In early November, with the sixth month of waiting almost up, Ted reentered the Baylor Medical Center with arrhythmia. Doctors stabilized his condition, and there was talk about his going home. But Ted told a friend that he was fading and couldn’t talk anymore.
During the next 48 hours, his condition worsened. Doctors put him on an intra-aortic balloon pump, then a bypass machine. He stayed that way all through the night. Pat called Tracie and Scotty and told them Ted had gone back to intensive care. They went to Dallas, along with Dena, Homi, and Brad, thinking it was like every other time—Ted would be coming back. But as they gathered around a disbelieving Pat, it became clear that Ted was much worse. Tracie and Dena saw their father tethered to the dreaded machinery and were crestfallen. “Dena believed he could hear us, but I new he was gone,” Tracie says.
Word went out that Ted was on UNOS STAT. Dr. Alivizatos stood by, ready to operate at a moment’s notice. The UNOS computer turned up nothing, and on November 8, 1987, Ted Segal’s worst fears were realized. He died without a new heart and without ever seeing his new grandson, born two weeks later.
The Crapshoot
“It wasn’t meant to be, I guess,” is Pat’s tearful assessment. “There isn’t anyone to blame.”
If Ted was victimized by anything, it was by a technology that has jumped way ahead of both ethics and logistics. Can a computerized point system judge who should get hearts” Can doctors who have to meet annual quotas to keep their programs going be counted on to play fairly?
“The people using this system think that it is objective and free of values because it is a point system that can be applied mechanically,” says Dr. Baruch Brody, the director of the Center for Ethics, Medicine, and Public Issues at Baylor College of Medicine in Houston. “They are not taking into account more-human elements, like what the waiting time does to people.”
The fact remains that the second-largest organ bank in the country couldn’t find a donor for Ted Segal within three months. When asked why, Steve Haid, the executive director of Southwest Organ Bank, replied, “Organ availability in the case of heart transplant is a function not only of quantity but of specifics, such as size and blood type. And in general our number of local donors is down by fourteen percent.”
There are not enough donors anywhere in the nation today, despite routine-request laws and increased donor awareness. Dr. Young at the Multi-Organ Transplant Center in Houston attributes the supply-and-demand imbalance to stricter drunk-driving and seat-belt laws. Others just don’t think that routine requests for donors are all that effective—brain death is still a concept that flies in the face of most religious teachings.
To this day, Dr. Alivizatos believes that he did the right thing by not taking the Waco heart in August. “It would have been an unnecessary risk because Ted was stable at the time. If he had been desperate, I’d have taken anything,” he says. Obviously, desperation is hard to measure. The Texas Heart Institute took the heart, and at this writing the patient who received it is still alive.
Alivizatos is more concerned that a heart did come available that he was never notified about. One of the competing hospitals in Dallas reportedly harvested the organs of a Type O donor during Ted’s waiting period, and because O is the universal donor, the heart might have worked for Ted. Alivizatos thinks the hospital went around the organ bank and sent the heart directly to Houston, even though the liver was transplanted in Dallas.
His allegation is impossible to prove because at the time UNOS did not require organ banks to report donors to the computer. Other transplant surgeons and organ-bank people who hear of the charges are not surprised. The mad dash among transplant programs to meet UNOS standards during Ted’s wait partially turned transplantation into a nasty numbers game—a morbid melee of too many patients and too few donor organs.
But by any surgeon’s standards, Ted was a perfect candidate up until he died. “I am a fatalist,” says Alivizatos. “He was simply unlucky.” Even amid the high-tech gadgetry, sophisticated test, computer networks, jets, Igloo ice chests, and the incredible drugs that tell an entire immune system what to reject or accept, heart transplantation is still a crapshoot.
Ted Segal tried to control the roll of the dice and lost.
Cathy Schechter is a freelance writer who lives in Austin.
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