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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Dr. Scotty Hermann was running late. Though he was usually rushing to deliver a baby, today he had promised his father-in-law, Ted Segal, that he would meet him at Providence Hospital in Waco to check the results of Ted’s catheterization, a test in which dye is pumped into the heart. Scotty arrived, breathless, just as the nurse was wheeling Ted to his room. They waved at one another, and Scotty promised that he and his wife, Tracie, would be back later to visit. Then he sat down with the cardiologist to watch a videotape of Ted’s test.
Scotty saw what he had expected but what he had hoped he would not see. He turned to the other doctor and said, “God Almighty, he ought to be dead.”
The film showed that Ted’s heart was pumping out only about 10 percent of the blood going through it. A normal heart should pump out at least 40 percent. What should have looked like a pumping fist looked more like a stiff new baseball glove with the fingers barely wiggling. And now, in April 1987, Ted had begun to develop the signs of heart failure—fluid retention, weight gain, shortness of breath, fatigue.
Scotty was amazed at how much self-control Ted had. “He didn’t let on how sick he was. He didn’t complain, but he knew as well as I did that he was a dying man,” Scotty recalls.
That night Scotty and Tracie went to the hospital room, where Pat, Ted’s wife, was with him. “What the hell are you waiting for Ted?” Scotty asked. “Either you get a heart transplant or you die.”
“Well, then, I guess I don’t have any choice,” Ted replied. “Let’s go get a transplant.”
Under a Lucky Star
Getting a transplanT—it sounded so simple. The classic front-page photo showed a Learjet, a handsome doctor, and an Igloo ice chest with a human heart inside. In 1986 surgeons transplanted 1,368 hearts; a year later four out of five recipients were still alive. Ted Segal liked his chances. But little did he know as he steeled himself to face the calculable risks of the operating room that he would soon be wrestling with the ethical and procedural vagaries of a whole new branch of medicine: organ banks. At 53, Ted was full of hope. It was only after months of frustration that he began to think of his search for a new heart as his “odyssey.”
Ted had known for years that the only way he would live to see his fifty-fifth birthday was to have a heart transplant. His first heart attack had come in 1977. He was watching his younger daughter, Dena, play softball when he started to feel bad. He drove himself to the hospital, walked into the emergency room, and announced that he was having a heart attack. Sure enough, his diagnosis was correct; he was having a myocardial infarction—the official term for “heart attack.”
At one time, Ted had aspired to be a doctor. Born and raised in Dallas, he left home after high school to attend the University of Texas at Austin. Overcome by restlessness, he joined the Navy in 1951 and trained as a hospital assistant. In 1955 he headed to Southern Methodist University on the GI bill to major in pre-med.
Two years later, though, Ted caved in to parental pressure and joined the family cotton-products manufacturing business with the promise of eventual partnership. Soon after, he met Pat Gordon of Houston on a San Jacinto Day blind date, and it was love at first sight. Four months later Pat and Ted were married, and Pat was soon pregnant. She lost two babies and underwent eight hospitalizations before their first daughter, Tracie, was born in 1961. Unable to have more children, Pat and Ted adopted Dena, then Bradley, and their family was complete.
In 1966 the Segals moved to Waco to take over Pat’s parents’ maternity-wardrobe business. Money was tight, but Ted remained optimistic. “I was born under a lucky star,” he often told Pat. “Things are going to get better—as long as we have our health and our children.” Pat remembers that when Ted first saw her at the hospital after his heart attack, he asked, “Did Dena get a hit?”
The myocardial infarction left 20 to 30 percent of his heart muscle dead; even a man as athletic as Ted was lucky to survive. But he rebounded, and after rehabilitation he was running 25 to 30 miles a week. He had never felt better.
Then one day in 1982 he couldn’t run his usual five miles; he could run only two. It was only a small symptom, and he didn’t complain. He tried not to worry, but he felt worse and worse and finally ended up back in the hospital with another heart attack. Once in the coronary-care unit, Ted had a second coronary. The damage was so extensive that doctors decided bypass surgery wouldn’t help, and they told Ted that without a heart transplant, he would be sedentary for the rest of his life.
But in 1982 the “miracle” anti-rejection drug, cyclosporine-A, was not yet on the market, and there were only three places in the United States where heart transplant continued experimentally: The University of Pittsburgh School of Medicine, the Stanford University School of Medicine, and the Medical College of Virginia at Richmond. Ted was betting that technology would someday catch up with his problem; he purchased a $1 million catastrophic health insurance policy and hunkered down.
In 1984 the job he had taken as a traveling carpet salesman became too difficult. The foods that fit his low-cholesterol, salt-free diet were hard to find in hotels and restaurants, and Pat worried about him constantly. Eventually, Ted couldn’t lift the carpet samples out of his car for demonstrations. By the following year, his condition had made it impossible for him to work full time. He opened a carpet showroom in his home and worked whenever he could.
By March 1987, Ted could not even walk to the end of the driveway to take out the garbage without having to sit down to rest. Just talking exhausted him. His heart became so weak that it couldn’t pump the blood and fluid out—a condition known as congestive heart failure. When the fluid and blood backed into his lungs, Ted felt a choking sensation, a new and ominous development. He had enough knowledge of human anatomy to realize that it wouldn’t be long before his kidneys, liver, and other internal organs began to fail too.
Before his son-in-law walked into his hospital room that April night in 1987, Ted knew what his choices were. Transplantation and its aftermath were fearsome and mysterious, but they sure beat the hell out of the here and now.
The Cyclosporine Era
By April 1987, heart transplantation had become more common, and Ted had several Texas programs from which to choose—three in Dallas, two in Houston, two in San Antonio, and one in Austin. With the exception of the two in Houston, none of the programs was older than a year and a half.
American doctors had begun experimenting with heart transplants in the early sixties at Stanford and the Medical College of Virginia. Doctors learned early on that the real problem was not the surgery itself but rejection by the host’s immune system. Then in 1967 an unknown surgeon, Christiaan Barnard of Cape Town, South Africa, captured the world’s imagination with the first human-heart transplant. Within the next eighteen months, more than one hundred patients received heart transplants worldwide.
Many of the early operations took place in Houston. Dr. Michael DeBakey of Methodist Hospital and his student-turned-rival Denton Cooley of St. Luke’s Episcopal Hospital became the new superstars of medicine. One third of all transplants during the eighteen months after Barnard’s first operation occurred at Methodist or St. Luke’s.
The transplant surgery itself was simple enough. Once a donor heart was found, it was preserved in a saline solution, then packed on ice. Meanwhile, surgeons made an incision near the breastbone of the recipient, attached him to a machine that pumped oxygen and blood, and removed the old heart, except for the atria, or upper chambers. They next attached the old atria to the donor atria, pulmonary artery, and aorta. After the new heart was in place, they forced out the air, removed the clamps from the aorta so blood could flow, and waited for the heart to beat on its own.
The surgery worked, but most of the early patients were dead within two years. Some died from rejection. Others inadvertently succumbed to steroids and other drugs used to keep the immune system from attacking the new heart. Those powerful drugs also suppressed the body’s overall ability to fight infections, turning even the common cold into a killer. In 1970 most institutions, including the two in Houston, declared a moratorium on heart transplants.
Coincidentally, the year the moratorium began was also the year cyclosporine was discovered. When Jean Borel, a researcher at the Swiss drug company Sandoz Limited, was vacationing in Norway, his company asked him, as it does all of its traveling employees, to bring back soil samples. There was always the hope that some anti-cancer agent could be found in the soil organisms. The soil that Borel brought back had not one but two new forms of fungus, and one extract killed “clinically irrelevant organisms.”
His company was not impressed, but Borel persisted in his research and by 1972 discovered the remarkable immunosuppressive effect of cyclosporine. American scientists at Johns Hopkins University School of Medicine in Baltimore began experimenting with cyclosporine and over several years determined that whereas the previously used immunosuppressive drugs had decimated the immune system, leaving it vulnerable to infection, cyclosporine destroyed only the part that rejected foreign tissue. The Food and Drug Administration approved cyclosporine in 1983, and a new era of heart transplantation began.
In 1982 Dr. Cooley, along with his protégé Dr. O. H. “Bud” Frazier, had begun experimental transplants using cyclosporine at the Texas Heart Institute. In 1984 Dr. DeBakey and Dr. George Noon resumed heart transplantation at the Methodist Hospital—Baylor College of Medicine Multi-Organ Transplant Center in Houston. Cyclosporine, as well as early detection of rejection and improved methods of patient management, ensured that 80 percent of recipients nationally were still alive at least one year after surgery.
In the best-case scenario, a heart-transplant patient could expect to return to work and normal life within a couple of months. In the worst case, death by rejection could occur within days. In 1984 Howard Pierce, of Houston was one of the first heart transplants at the Multi-Organ Transplant Center. He was dying before the surgery; within six weeks he was back at his job with an oil company. To look at him today, at the age of 49, says Dr. James Young, the clinical director of the program, “you would never know this guy had a transplant.”
Side effects from the drugs, however, make normal life nearly impossible for most transplant patients. William Day, 60, of Houston, has experienced the side effects of cyclosporine—hypertension and nuisance ailments like headaches and tremors. Terry Kalenda, 31 of Corpus Christi, received a new heart in 1984. He has suffered kidney ailments as a result of cyclosporine, but he and his wife are expecting a child in June. Henry Lauricella, 41, of San Antonio, had his transplant at Stanford University Hospital in early 1984. He suffers from some side effects of cyclosporine, such as acne, but is bothered most by the effects of steroids. Prednisone has caused mood swings along with aseptic necrosis of his hips, a complication that required total hip replacement.
Lauricella has also had problems getting a job. Before the transplant, he was an accountant; today he can’t find a good job. Employers, he complains, are often hesitant to hire transplant patients and especially to insure them. Drugs are costly too. “We’re fighting to say middle class,” says Lauricella.
Still, the side effects of drugs were better than certain death. Survival was the issue, and a high surgical success rate quickly lifted heart transplantation out of the experimental realm of academic medicine and into regular clinical practice. By 1985, Stanford was sponsoring training seminars so that after three days, a cardiovascular surgeon with the right equipment and support services was well on his way to setting up his own program. Suddenly St. Paul Medical Center, the Hearth Center at Methodist Medical Center, and Baylor University Medical Center in Dallas had heart-transplant programs, as did Humana Hospital and the University of Texas Health Science Center in San Antonio. “Heart Transplant was sexy, and everyone wanted on the bandwagon,” says Dr. Martin White, one of the founders of the Southwest Organ Bank in Dallas.
But sexiness wasn’t the only reason transplant programs sprang up. Convenience was another factor. As more and more heart patients were attracted to transplant programs, the wait for a heart grew longer. Patients and their families who had to camp out in strange cities found the waiting both demoralizing and expensive. The Multi-Organ Transplant Center in Houston estimated that two “frugal” people who had to bide their time there could expect to spend from $1,130 to $1,580 a month in living expenses alone.
One patient, 63-year-old Leroy Smith of Austin, announced to his cardiologist that he would rather die than wait for a heart in Houston. “I didn’t want to disrupt the lives of my children. I just wanted to be close to my family. What better support can you get?” he says.
Smith speaks with the happy hindsight of a man who has succeeded in getting a new heart without leaving his hometown. To Smith’s good fortune, doctors and administrators at smaller regional hospitals, such as Austin’s Seton Medical Center, in the mid-eighties had begun to perceive the need for local transplant programs. Leading the charge in Austin was Dr. John “Chip” Oswalt, an easygoing Fort Stockton native who had attended the University of Texas Medical Branch in Galveston and trained at the UT Health Science Center in San Antonio. In the fall of 1985 he and three surgical associates—H. S. Arnold, Jim Calhoon, and Emery Dilling—went to Stanford to learn how to set up a transplant program.
After the Stanford seminar, they went to the Tennessee Heart Institute in Nashville and Cooley’s Texas Heart Institute to observe. Then the surgical team went to San Antonio to experiment with transplanting the hearts of dogs at the UT Health Science Center. By February 1986, the three doctors were back in Austin, ready for their first transplant at Seton Central Texas Heart Institute. In their second operation they transplanted the heart of a seventeen-year-old into the chest of Leroy Smith.
Seton would never have the money, research capabilities, or prestige of the Multi-Organ Transplant Center in Houston, UT-San Antonio, or Baylor in Dallas, but neither would an Austinite ever again have to move elsewhere for a transplant. “Now that we can transplant hearts, “ Says Oswalt, “we are well-rounded. You can get all the cardiac care you need in Austin.” Adds George Gentile, the vice president of operations for Seton Medical Center, “We don’t promote ourselves as a transplant center. We simply provide a community service.
Six Months to Live
Something about the Seton program appealed to Ted. He had always called himself “the squeaky wheel,” the guy who didn’t go along with the crowd. The Houston programs seemed big and impersonal; Seton, on the other hand, was young and small but growing. Ted also liked Seton’s emphasis on team effort. After a year and seven transplants, five patients were still alive. So in May 1987 Ted and Pat drove the hundred miles from Waco to Austin for an interview.
The Segals were greeted by Bobby Richards, a registered nurse who was the program’s transplant coordinator. Her cheerfulness and soft brown eyes belied the cold, sterile feeling of a hospital. Her job was to act as a lifeline between the patients and the medical team, and she offered candidates a message of hope even while talking bluntly about survival rates, the rigors of recover, and the side effects of the drugs.
Richards spent the first day educating Pat and Ted about transplantation. The physical evaluation would consist of a number of test—Ted would be poked, probed, catheterized, and x-rayed to check his heart, live, kidneys, lungs, and other organs. The ideal candidate is one whose only broken part is the heart. The healthier the rest of the body, the better.
Ted and Pat also met with a social worker, who asked questions about their family and how well they coped with crises. Would the rest of the family care for Ted when he couldn’t care for himself? Would he allow them to? The right physical condition wasn’t the only requirement; Ted would have to have the right attitude, the drive to live. The team had to know that Ted as stable enough emotionally to withstand the strain of waiting for a new heart and to care for it once he had it.
From the social worker, they went to a hospital financial officer, who asked about insurance coverage and family finances. The surgical fee was $10,000, and the average cost of hospitalization could be as much as $30,000 for the surgical and postsurgical period alone. The procurement of a donor heart—a cost passed from the organ bank to the hospital and then on to the patient—depended on the location of the donor, the price of the surgical suite and intensive-care unit for the donor from the moment of death, and whether or not a jet was used to transport the new heart. Seton’s records showed that procurement could cost as little as $5,000 and as much as $14,000. Cyclosporine and other life-sustaining drugs that Ted would have to take for the rest of his life could run from $6,000 to $10,000 a year.
Finally, Bobby Richards laid out Ted’s chances and described the surgery in detail. Organs were too scarce, she told Ted and Pat, to be wasted on smokers, drinkers, drug abusers, or anyone who failed to exercise or take the required medications. And Ted would probably have to wait at least six to eight weeks for a heart and maybe longer, because his blood type, B, was less common.
“How long do people who are selected for a transplant usually have to live?” Pat asked.
“About six months,” Richards replied. Pat was shocked. Ted’s condition had never been assigned a deadline. If that was the case, she wanted him on the waiting list immediately.
The Segals returned to Waco, and the next day Ted went into heart failure. Pat called Richards and arranged for Ted to officially enter the Seton program. The poking and probing began in earnest.
At first he had to be hospitalized so his cardiologist could regulate his drugs. At one point, Ted got tired of the needles and IVs and told Pat that he didn’t want to go through with the surgery. Pat cried and screamed at him. “What are you doing this for? Don’t you want to live?”
Bobby Richards came in and reminded Ted sweetly that he could drop out if he wanted, but to remember his options. Ted said he was tired of being sick—he just wanted a normal life and a beer too. Within minutes, Richards was back with a Miller Lite, and the storm passed.
Ted’s condition improved enough for him to leave the hospital, but the team thought he should stay in Austin until a heart became available. Richards arranged for the Lexington Hotel Suites in Austin to donate an apartment. Now it was time to settle down and wait for a new heart.
The Old Pump
Years of sicknesses, children, financial problems, and other family crises had knit Pat and Ted Segal tightly together. They trusted each other’s strength absolutely. In early June there was not question in either of their minds that a heart would come. That they would have to adjust their lifestyle to a new set of circumstances seemed obvious. They would simply cope as they always had.
On the outside, they did it admirably. They settled into the Lexington. Ted’s condition, coupled with the heat, kept him a prisoner of his room and the television. Pat busied herself by going to Austin grocery stores, reading junk novels, and talking to her friends on the phone. She wore a beeper, which gave her some measure of freedom, but she chose to stay close to Ted. They took short walks to the pool to watch the life of the hotel. They dubbed the other regulars the Pervert, the Golfer, and the Lady’s Man, and one night they watched a drug bust. In the evening they explored restaurants to see which ones made the best salt-free meals. But beyond that, any semblance of a normal life stopped.
They looked forward to visits from their children. Bradley would be attending the University of Texas that fall and was looking for an apartment in Austin. Tracie and Scotty had a new baby, and Dena and her husband, Homi Seirafi, were expecting one in November. The experience of being grandparents was new and exciting for Pat and Ted, and they were sure that by the time Dena’s baby was born, Ted would be on the road to recovery. For now, they were just glad that Ted was not in the hospital tethered to an IV.
Ted was like a man treading water in a maelstrom. The episodes of congestive heart failure scared him because they were beyond his control. He had been a competitive athlete, and his fear of losing to his own heart, of all things, kept him struggling to stay on the surface. But he always feared that something, anything, would pull him into heart failure again.
Pat had always trusted Ted’s resilience so totally that every time they had wheeled him into the emergency room, she knew he would come back. Now, even though Ted had had some tough breaks, God still seemed to be holding that lucky star over him. After all, it wasn’t an accident that technology had arrived just in time to save Ted. The only thing that terrified Pat was the thought of having to sit by helplessly while Ted was in surgery. “It’s really weird,” she said, “to think of those few moments when his chest will be a big hole, when he has no heart at all.”
But Ted wasn’t bothered that his heart was going to be thrown away. “It’s just like an old pump in a broken car. If it can’t be fixed, you replace it. It’s not like they’re transplanting my brain,” he said.
What bothered Ted was that one day soon—he didn’t know when, but it had to be soon—some unsuspecting person would wake up, have breakfast with his or her family, go to work, and die. That unknown someone had Ted’s new heart, and Ted knew how upset his own family was. It unsettled him even more to picture a grieving widow or parent having to give away a loved one’s organs. Because a heart can survive no more than four to six hours without blood and oxygen, Ted Segal would probably finish out a day with a heart that had beat in another person that very morning.
The donor could be of any sex, race, creed, or nationality, could range in age from thirteen to forty, and could be as close as next door or as far away as two-hour jet ride. All that was required was that the donor have a healthy heart with type B-positive blood (Ted’s blood type) or type O (the universal donor) and roughly match his size and weight.
Ted’s presence at Seton was a coup for the young Austin program. For starters, it showed that people from other places in Central Texas would come to Seton for a transplant; it also brought publicity. Because Ted and Pat were open and articulate, they were naturals for television. KVUE-TV in Austin had been hot for a step-by-step transplant story, following a patient from initial evaluation through surgery and into the aftermath. Ted and Pat hoped that their story would increase donor awareness and draw attention to their plight. Seton was eager to have its image as a major medical center bolstered. Reporter Anna Martinez and cameraman Paul Rios, Jr., were assigned to the story and began to follow the Segals for several hours a day; they too wore beepers and were on call in case a heart came.
At first, Martinez and Rios were disarmed by Pat and Ted’s humor and candor. Only after three or four weeks did the couple’s apprehension and terror begin to emerge on film. “It was like they were anxious to get the surgery over with and move on to the rehabilitation,” Martinez says. “Another patient waiting at Seton had a successful transplant, and that seemed to increase their agitation, especially Pat’s. They were wondering, ‘Why can’t it be us?’”
To add insult to injury, that transplant story made the front page of the Austin American-Statesman and revealed that the patient had waited only two weeks. But as Bobby Richards explained to the Segals, the other patient and the donor each and type A blood. The patient was much smaller than Ted, and the donor had been a thirteen-year-old boy; their body weights were close. Even though Ted had waited longer, the donor heart had fit the other man and wouldn’t have worked for Ted at all.
Paul Rios, like Pat and everyone else closely associated with the Segals as they waited, began scouring the newspaper for accidents in the area; they key words were “critical condition with a head injury.” What would ordinarily be considered a morbid perversion became a daily routine.
The first week in July, six weeks after entering the program, Ted was still waiting. A Chicago-area hospital had offered a heart, but the donor was 46 years old and had been a smoker. Dr. Oswalt decided against it. Besides, as Ted had always said, pounding his chest, “I want something young and Primo.”
The Fourth of July, traditionally a time for car accidents and donor organs, came and went with no new heart. Each Monday brought depression for Pat and Ted because, as Pat said sardonically, “no one had died over the weekend.” Pat was beginning to jump at each ring of the phone. “I’m a Jewish mother,” said Pat, “and I’m used to being in control.”
Six weeks turned into eight weeks, and Ted and Pat began to have doubts about Ted’s chances. For one thing, the Central Texas Organ bank at Brackenridge Hospital, the procurement agency that would provide Ted’s new heart, covered only Travis County and the ten surrounding counties. And those counties were generally rural, lessening the likelihood of donors by violent death. Perhaps the organ bank was casting too small a net. Was there somewhere else they should be looking?
Supply and Demand
The offices of the Southwest Organ Bank in Dallas could not be more nondescript. A receptionist sits at the front with a telephone and a computer. Coordinators work two to an office. The only hint in the summer of 1987 that this was the second-largest organ bank in the country (behind one in Los Angeles) was the stack of Igloo ice chests at the doorway.
Founded in 1975 by three doctors, including kidney specialist Martin White, Southwest Organ Bank was originally a nonprofit, independent organ-procurement agency for the kidney-transplant programs at Dallas’ Parkland Memorial Hospital and Veterans Administration Medical Center. Even during the pre-cyclosporine hiatus in heart transplantation, kidney transplant continued. Kidneys can last for as long as 36 hours after removal, allowing immunologists time to make better matches between donors and recipients.
By 1976, San Antonio had a procurement agency, the South Texas Organ Bank, followed by another at the UT Health Science Center. Houston had two competing organ banks, one for the Multi-Organ Transplant Center and another serving the Texas Heart Institute and Hermann Hospital. With the advent of cyclosporine and the increased success rates of heart, lung, liver, and pancreas transplants, it soon became obvious that the network for sharing organs needed to be expanded and streamlined. The solution was a computerized clearinghouse, with organ banks serving as middlemen in an increasingly sophisticated process unofficially know as organ “harvesting.”
Once a family has agreed to donate a relative’s organs, the organ bank first looks for a local recipient. If one is not found immediately, the organ bank taps into the computerized waiting list at the United Network for Organ Sharing, in Richmond, Virginia. By sorting through its data base of patients according to organ size, blood type, urgency, and location, UNOS can identify a recipient somewhere else in the country in a matter of minutes.
But like most structures, this cleaning-house for organs has its flaws, all of which stem from the fact that the demand for organs far exceeds the supply. Each year, between 14,000 and 20,000 Americans suffering from end-stage heart disease would benefit from a transplant, but only 1,000 to 1,200 donor hearts are available.
To handle the pinch, the medical community has devised objective guidelines for who gets a heart. Until October 1987 UNOS worked by a simple point system. Every patient in the computer had a number—1 for “hospitalized and waiting” and 4 for “home and able to work.” A special designation, “UNOS STAT,” meant the patient was on life support with less than twelve hours to live. Under UNOS guidelines, organs automatically went to the sickest patient, if no local need existed. The problem was that doctors often inflated their patients’ ratings to move them up the UNOS list.
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.
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.
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.
“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.