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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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.
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