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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Ultimately, there were so many 1’s that doctors were back to choosing on a more subjective basis. While Ted Segal was in Seton for evaluation, he was listed as a 2, but he became a 3 when he and Pat settled into the Lexington. There was only one catch: Even though the most-critical patients get the hearts first, the surgical survival rate is higher for patients in stable condition. “Sometimes I was afraid I was too sick,” Ted said, “and other times I was afraid I wasn’t sick enough.” The system was eating him alive, and he knew it.
Ted was also caught in the middle of the escalating turf war among Texas organ banks. New state and federal legislation known as “Routine request” required all hospitals to inform families of brain-dead patients of the opportunity to donate organs. To comply with the law, a hospital needed to be affiliated with an organ bank. At the same time, the organ banks began to look farther afield to increase their donor territory. “Come under our umbrella,” they would urge, “and our organs will be available to your patients. All you have to do is sign an affiliation contract that commits your donors to us.
The turning point came in 1986, when the federal government put UNOS in charge of accrediting organ-procurement organizations and transplant programs. To qualify for federal funding of heart transplants, a program now had to perform at least fifteen transplants a year. Suddenly, transplant teams like Chip Oswalt’s in Austin were under the gun. In its first year, the Seton team had done only seven transplants. As Ted and Pat waited at the Lexington, the Austin program waited for news on its UNOS accreditation. Everyone was nervous now.
The giant in the transplant field was Southwest Organ Bank in Dallas. Because of another federal ruling that said there could be only one organ bank per region, the two organ banks in Houston became preoccupied with negotiating a merger, and each of the two San Antonio organ banks was caught up in securing UNOS accreditation and federal funding. Houston and San Antonio had spent their time meeting federal guidelines, not expanding their territory. And though Southwest’s closest competitor, the South Texas Organ Bank in San Antonio, covered 36 hospitals as far south as the Rio Grande Valley, many in its largely Hispanic donor base were uneasy with the idea of giving up their organs. When asked to endorse organ donations, the archbishop of San Antonio said he could not do so in good conscience until he had made up his mind about whether he would donate his own organs. Meanwhile, Southwest was busy gobbling up hospital affiliations in North, north Central and East Texas. It opened affiliated organ banks in Galveston, El Paso, and Corpus Christi. A full two thirds of the state was now Southwest’s.
But when Pat Segal asked her son-in-law Scotty Hermann to help her in broadening the search for a heart, Scotty advised her to contact Jim Hayes of the South Texas Organ Bank—because many Waco doctors had studied in San Antonio and because Waco was linked to the San Antonio organ bank.
Hayes is a trained hospital administrator, unlike most organ-procurement people, who typically are nurses or technicians. He is used to receiving desperate letters and photographs from transplant candidates or, more wrenchingly, from their parents. But he had never been called directly and asked, “Where are we going to get a heart fastest?” Hayes answered Pat Segal’s question truthfully: Southwest Organ Bank in Dallas.
Pat and Ted had heard from several sources that there was a doctor who had been doing transplants at the Baylor University Medical Center in Dallas for a little more than a year with a 100 percent surgical success rate. His name was Peter Alexander Alivizatos. It was now the end of July, and after eight weeks of fruitless waiting, Pat and Ted didn’t need much encouragement to go on a little shopping expedition.
Shopping for a Heart
Peter Alexander Alivizatos is the quintessential heart surgeon, with long, manicured fingers and a suave, continental air. His education took him from the University of Athens in Greece to Harvard Medical School, the Lahey Clinic in Boston, and Baylor Medical Center in Dallas. He studied general surgery at Boston University and cardiothoracic surgery at the Medical College of Virginia, where he performed his first human-heart transplants before cyclosporine was used. He spent a year doing transplant research in Virginia before going to Harefield Hospital in London from 1982 to 1984 to work with Magdi Yacoub, the English trailblazer in transplantation. Alivizatos’ office is filled with autographed photos of his medical mentors: Yacoub, Richard Lower of the Medical College of Virginia, and a Greek navy surgeon who, Alivizatos boasts, “had a technique that would make Cooley jealous.”
Unlike Chip Oswalt and the Austin team, whose program was based on community need, Alivizatos was an academic striving to build a first-rate research and clinical transplant program at the Baylor Medical Center. He saw himself as a pioneer obsessed with excellence in the surgical treatment of heart disease. And to Alivizatos, transplantation was the ultimate. “It’s the closest thing in medicine to resurrection,” he says. “No other procedure in medicine can avoid death and restore health all at once.”
Perfection depended not just on surgical skill, said Alivizatos, but on the selection of the patient. Sensing Ted’s uncertainty, Alivizatos wasted no time clearing the air. “Ted, “ he said, “you are not K-Mart shopping here. You have to make a commitment to my program. That is what I ask of all my patients. This is like a marriage between us for the rest of our lives.”
Rules were the least of Ted’s worries. Ted had been happy with the Seton program, but it hadn’t found him a heart. He was not intimidated and told Alivizatos point-blank that he did not want to have to become critically ill to qualify for a heart. He wanted one now, while he was stable enough to withstand surgery.
Dr. Alivizatos assured Ted that what he had heard about Southwest Organ Bank was true. “Don’t worry, Ted,” he said. “You’re not going to die.”
Alivizatos put Ted in the hospital on July 30 and bumped him up to a 1 on the UNOS scale for the next ten days. If a heart was not found by the end of that time, Ted’s name would be removed from the computer for two and a half weeks while Alivizatos went to Greece for business and a vacation. Ted was not to worry; Alivizatos would find Ted a heart. Did the doctor designate another surgeon who could operate on Ted in his absence? No. The Segals were to go home and wait.
Who Gets A Heart?
Every day for three months as Scotty Hermann passed the emergency room at Waco’s Hillcrest Hospital on his way to make his rounds, he made a point of asking the nurses, “Have you found a heart for me?” All of the emergency-room personnel knew about Scotty’s father-in-law and had taken special interest in watching for potential donors.
The day before Ted and Pat were to return to Waco, Scotty made another routine inquiry. The response he got this time made his own heart skip. “We’ve got a guy in ICU with a gunshot wound to the head,” a nurse told him. Scotty dashed upstairs to check the chart.
The patient was a 32-year-old man with no history of drug or alcohol abuse. His blood type was B! The perfect donor for Ted. One more day, and Alivizatos would have been unavailable for surgery. Scotty tried to stifle his emotions. The line on the electroencephalograph (EKG) was not yet flat—a sign that the man with Ted’s heart was not yet brain dead.
Scotty sat in the intensive-care unit and watched the young man struggle for life. As much as he loved his father-in-law, Scotty had tried desperately to stay on the periphery. Now he was in the thick of the struggle, and he hoped against hope that this would be the beginning of the end of the long wait. “I had trained for twelve years to save lives, and here I was, waiting for this guy to die,” he recalls. “It was depressing and exhilarating all at once.”
The man died that afternoon, and his family agreed to donate his organs. Scotty Hermann weighed his options, then decided to have the hospital call Jim Hayes at the South Texas Organ Bank. Scotty knew the procurement agency had to service San Antonio first, but he hoped they would consider giving the heart to Ted. Scotty knew that this sort of professional courtesy broke UNOS rules. But his father-in-law’s life was at stake.
The donor coordinators at the South Texas Organ Bank had already been notified that the organs would be available, and their check revealed no local names on the waiting list. Regionally, however, there were two other patients in need—one at the Texas Heart Institute in Houston and one in St. Louis.
The task of seeing that a heart is not wasted falls to the organ-bank coordinator. Even though the UNOS system helps a coordinator decide whom to contact first, the final decision still lies in the hands of the transplant surgeons. Practical matters like distance (how quickly can the heart be delivered?) and preparedness (are your jet, surgical team, and patient ready?) are important, but no computer or point system can ever replace the on-the-spot judgment of doctors. The question they must ask themselves is, Is this really the best heart for the patient? Never, according to both doctors and organ-bank coordinators, do they base their decisions on anything other than medical criteria. A busboy with an eighth-grade education and a failing marriage does not necessarily wait in line behind a happily married, college-educated carpet salesman.
Much to Scotty’s relief, the St. Louis team turned down the Waco heart because the patient’s weight didn’t quite match the donor’s. The Texas Heart Institute reported that its patient wasn’t critically ill; he was at home and stable. After what seemed like eons of anxious waiting but was actually only a few minutes, the organ bank phoned to say that the heart was Ted’s. Scotty called Pat and Ted with the good news.
Tracie was packing by the time he got home, and Dena, Homi, and Brad were all ready to go. Then, in mid-frenzy, the phone rang. It was Pat calling from Dallas. Stop packing. Dr. Alivizatos had turned down the heart.
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