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Surgeon's career cost him his health

The Starzl Story / Second of two parts

Monday, June 12, 2000

By Anita Srikameswaran, Post-Gazette Staff Writer

Dr. Thomas Starzl was always known for the way he immersed himself in his work. Over time, his body paid the price.

Dr. Thomas Starzl, playing with his dog last fall. (Darrell Sapp, Post-Gazette)  
In 1964, contact with infected blood during surgery gave him viral hepatitis, a disease that many other transplant pioneers acquired.

More than 20 years later, he began losing weight and having episodes of fever and night sweats, which turned out to be caused by pneumonia. The symptoms mimicked those produced by AIDS, and it occurred to Starzl that he was also at risk for that disease because he had operated on patients infected with HIV, the virus that causes AIDS.

Because of that, he made sure the Pitt surgery team underwent repeated tests for the virus. Somewhat to his surprise, no one had become infected.

On Christmas Eve, 1986, Starzl inadvertently glanced directly at a bright laser light used to cauterize bleeding vessels, and it left him partially blinded for six months while his left eye healed. After that, he said, his vision was not as sharp. He limited his involvement in children's transplant surgeries because he had trouble working with the miniaturized anatomy of children.

    Starzl Story / Part 1

Long hours standing by an operating table also took a toll on his back.

But perhaps what signaled most clearly to him that it was time to slow down was a heart condition that suddenly announced its presence in 1990, when he was 64.

"This thing was like a red hot poker right down the middle of my body," Starzl said.

He was climbing the first set of stairs to his office one Saturday morning when the pain struck. He lay down on the second floor landing until it subsided an hour later and then he got up and worked for another 12 hours. The pain recurred when he walked up the few steps to his house that night.

A doctor's wager

"I guess you would have to say that I had an inkling" there was something seriously wrong, the physician acknowledged wryly. The next morning, he went to the emergency room to meet a cardiologist. Starzl didn't want to have the recommended tests, insisting that he just had indigestion. A bargain was struck: He would walk down for a milkshake at Dave and Andy's, an Oakland ice cream shop. If he couldn't make it there and back, the tests would be done.

Starzl lost. The tests then revealed that one of his heart arteries was a sliver away from complete blockage. This vessel supplied most of the blood needed to nourish his heart muscle. Doctors opened up the artery using a catheter and balloon, but the fix was temporary. He needed bypass surgery.

He put off the operation for more than six weeks, until after he and his researchers presented several papers on the development of the anti-rejection drug FK506 at a meeting of the Transplantation Society in San Francisco.

His first bypass operation took place Aug. 24, 1990. The surgery was repeated last year because of recurring problems. And, in February, his gallbladder was removed. His health problems have curtailed a lifestyle that once included downhill skiing and bicycling.

Starzl stopped performing surgery soon after his first heart operation, once he had made sure there were surgeons to pick up where he had left off.

"There were some things I had never taught anybody," he said. "We had just developed intestinal transplant procedures. I had done all the donor cases and nobody else really knew how to do them."

Although he no longer wanted to perform surgery, Starzl still had plenty to do.

In 1992, Pitt surgeons undertook the first of two attempts to transplant a baboon liver into a human. That patient and another who got a baboon liver in early 1993 died from infections soon after the procedures.

The transfer of animal organs into humans, called xenotransplantation, was intended to relieve the shortage of human organs, but it was highly controversial.

At the time, advocates for patients experiencing long waiting periods for organs faced off against animal rights activists on the lawn of Starzl's home. Once again, he was at the center of a dispute.

This particular one led to one of the more unusual corrections to appear in the Pittsburgh Post-Gazette. A 1993 article said that xenotransplant protesters gathered at his home and chanted, "Call Starzl a cannibal!" A demonstrator phoned the paper after that story and demanded a correction. They had actually been shouting, "Hold Starzl accountable!"

Science at 5 a.m.

Starzl's friends and colleagues know there are advantages to being a part of his life, not the least of which is the opportunity to participate in historic medical events. But there are some accommodations, too, as several pointed out.

Dr. Massimo Trucco, his colleague and neighbor: "We discuss science and it's fun. It's a little bit less fun when he's coming to my house at 5 a.m. on a Saturday. He's there continuously because he doesn't sleep anyway. He'll come to say the footnote to Figure No. 2 is wrong" on a scientific paper they've prepared.

Dr. John Fung, his protege: "He's a crazy driver. We were coming back from a donor operation and he made the driver go the wrong way down a one-way street to the emergency room. He parks anywhere. He'd park in the middle of the street if he thought he could get away with it."

Dr. Carl Groth, his closest friend: "He made a phone call to Sweden because we were writing a paper together. He couldn't get hold of me. Then he called the hospital. Finally, he called the national telephone company in Stockholm and told them they had to find me. They worked very hard on it, but ... they couldn't. I joked that next time, he should call the king [of Sweden], he might be able to help. He might well do that because he never gives up."

And finally, Joy Starzl, his wife of nearly 20 years: "At our first meeting, he told me he was an orderly."

Actually, she prefers telling people that when they met in 1977, she knocked Starzl off his feet. He was biking to the Denver hospital when she hit him with her car en route to her job as a lab technician. He brushed himself off, insisted that he was fine and a week later, he asked her to lunch. On these early but soon-to-be regular dates, Starzl neglected to mention his surname or the fact that he was a very well-known surgeon.

"I had no idea who Tom was," Joy recalled. "I never made the connection. One of the girls in the lab told me. She said, 'Do you know who that is? That's your boss's boss.' "

She was disappointed and "a little ticked" that the man she thought of as "warm and loving and understanding and nurturing" had tricked her. But when she confronted him, she accepted his explanation that he feared the truth would have sent her running. After all, he not only was her boss, he was almost 30 years her senior.

A growing relationship

In "The Puzzle People," his memoir, Starzl wrote of Joy Conger as a young, vibrant member of a research team he assembled in 1977, a year after he and his first wife, Barbara, had separated. That's when he and others on the team discovered that Conger was being physically abused by a man she was dating. In 1978, she sought a safe haven by leaving Denver to join her family in Texas.

While working in Dallas, Conger thought back to the stimulating conversations she and Starzl had shared over their lunches and movie dates. With her disheartening previous experiences with men and their age difference, she found it difficult to think of Starzl romantically. So she was taken aback when he proposed marriage. She didn't say yes right away.

Still, they kept in touch and traveled together occasionally. She helped him decorate his first home in Pittsburgh. One night, soon after her younger sister was married, Conger did some soul-searching.

"I do that sometimes, just sit by myself and think things through," she said. "And it was just that I was supposed to marry Tom. I called him and said, 'Do you still want to get married?' He said, 'You're kidding!' "

True to form, in the middle of the night, Starzl phoned Burl Osborne, a newspaper executive and one of Starzl's early kidney transplant patients, to ask a favor.

Osborne, by then the publisher of the Dallas Morning News, arranged to have a photographer at the August 1981 wedding.

The midnight phone calls are no surprise to Joy Starzl.

"If he calls anybody at that time, he has a brainstorm and he has to deal with it right at that time," she said. "The minute he has a thought, he has to tend to it. Many nights, I'll wake up and go upstairs [to his office] and he's writing, totally absorbed in what he's doing."

Can't sit still

Joy Starzl said her husband couldn't keep still and preferred to be walking, talking or otherwise on the go. With his restlessness, a leisurely dinner out on the town was practically impossible. They also limited their attendance at social events because, in her words, she'd get all dressed up and then lose her date when he'd be paged to go to the hospital 10 minutes after they arrived at a party.

"Now, when he's not in the midst of something, there's no problem" with their spending time together. But, she wistfully said, those moments have been "few and far between."

Joy is well-named. She is warm, vivacious and approachable, a charming counterpoint to a man who, while cordial, can seem intimidating, reserved and introverted to those who don't know him.

Starzl encouraged his wife's decision to attend Chatham College and complete her undergraduate degree. She went on to receive a master's degree in social work at the University of Pittsburgh.

Now, Joy Starzl is in private practice in Shadyside, counseling people on a broad range of issues. Her experience as a lab technician convinced her that she didn't want to become a physician, but participating in early transplant research helped her understand her husband's professional passion.

"After we moved here, I didn't see much of Tom, but I knew what he was doing," she said. "The rewards are so great that I could never see missing him. I'm not saying that I was [always] happy for him to tear out of here. [But] I did not ever feel I needed to compete with his job."

Unconventional as Starzl's behavior can be at times, his friends find plenty to cherish.

Eight years ago, when Trucco, an Italian immigrant, needed to obtain a state medical license immediately to direct a lab, Starzl found out that one could be granted if a prestigious physician sponsored the doctor and provided proof of the candidate's medical knowledge to an expert panel.

The prestigious physician who introduced the Italian scientist to the panel was, of course, Starzl.

"He described this person that I didn't know was me," said Trucco, who still seems amazed by Starzl's effort on his behalf. "It was so unbelievable."

Passion for research

In the early 1960s, the first five patients on whom Starzl did liver transplants in Denver died soon after the operations because of bleeding or clotting problems. Starzl halted the trials and resolved to improve the procedure before attempting it again. Researchers in Boston and France did the same. It would take until 1967 for Starzl to perform the world's first successful liver transplant.

In that four-year interval, Starzl returned to the laboratory to engage in what he called a hobby -- the search for growth factors of the liver. It was one of the many research projects he would undertake over time, not only to advance knowledge in his field, but to give himself relief from the stresses and frustrations of transplant surgery.

"Throughout the years, whenever I came up against a brick wall in transplantation, I would just go over and work on [liver biology] for a while," he said. "It was life-saving."

Starzl's greatest satisfaction was a discovery by his research team in 1991 that helped explain why some transplant patients were able to stop taking anti-rejection drugs, which are given to keep the recipients' immune systems from attacking the transplanted organ.

The team found that in successful intestinal transplants, the bowel tissue contained cells not only from the donor, but also the recipient. Further study demonstrated that donor blood cells that had stowed away in the transplanted organ could circulate in the recipient's bloodstream and find a home in distant tissues.

The close co-existence of cells from two people is known as microchimerism, named for the Chimera, a Greek mythological creature that had the head of a lion, the body of a goat and a serpent as its tail.

The importance of this mixture of cells is that it shows that the transplanted tissue in effect can "train" the recipient's body to stop attacking the donated organ.

"I had a tremendous sense of intellectual accomplishment when the chimerism story unfolded," Starzl said. "The discoveries opened up a great window of insight."

Ahead of the pack

Groth, a transplant surgeon at Sweden's Karolinska Institute and Starzl's friend, said that scientists acknowledge the existence of chimerism, but it isn't clear to them whether it produces tolerance for a transplanted organ or is a product of that tolerance.

"This is going to take some time, I think," Groth said. "It's going to be awhile before we can tell."

But it may turn out that Starzl is simply ahead of the pack, as he has been so many times before.

"The fact is, he can pick out [important] things," said Fung, the Pittsburgh surgeon. "Maybe it's luck or a guess, but I think it's intuition. He has sort of a knack [and] he's usually right."

In a 1998 article in the New England Journal of Medicine, Starzl and Swiss immunologist and Nobel Prize winner Rolf Zinkernagel proposed that tolerance for a transplanted organ occurs because certain cells in the recipient's immune system that would have attacked the donated organ instead commit suicide, a process known as apoptosis.

They said the same process permits certain infections, such as Hepatitis C, to linger in the body for decades.

Starzl theorizes that in transplantation, this cellular suicide won't occur unless the patient's body is first allowed to mount an immune response to the foreign organ. If that's true, giving patients high amounts of anti-rejection drugs right after a transplant may doom their chances of ever being weaned off the drugs, he said.

Not everyone agrees with Starzl's model, but no researcher contacted was willing to voice his criticisms openly, which may be a testament to the power Starzl still wields in scientific circles.

Starzl himself is convinced that other scientists have come to accept the theory. "The requests for reprints [of the New England Journal paper] have been overwhelming, more than any other [paper] that I can remember," Starzl said. "A lot of people were threatening to write angry letters and criticism, but [the journal] never received one single line."

Scaling back, sort of

Starzl's current efforts show that he has engaged in a workaholic's version of cutting back.

As Fung put it, Starzl has "mellowed, but he's certainly not lying on the beach and he certainly isn't goofing off."

His mentor seems to be thinking more and more about those who will come after him, Fung said. His research work, for instance, may be aimed partly at guiding future generations of scientists to avenues he thinks are worth exploring.

Starzl also has given Fung some personal advice. He told him to put a priority on family life, perhaps because of his own regrets about spending too little time with his children.

One way Starzl is trying to recapture the time he spent in the lab and operating room is by watching many of the movies he missed.

And, like the scientist he is, he doesn't simply watch the films, but reads criticisms and interpretations of them to broaden his knowledge.

He admires directors, particularly Japan's Akira Kurosawa and America's Stanley Kubrick. "They create these things like painters," Starzl said. "I think the great art form of the 20th century is the movie."

While he may take a more studious approach to movies than others, he is not pursuing it with the near-maniacal fervor he might once have shown.

"If it had been the old days, he'd be going to three movies a day," Groth said. "He was unlimited in everything. Now he's doing things in a more balanced way. He doesn't feel he has to achieve and accomplish every hour of the day."

His daughter, Rebecca, credits Joy Starzl for those changes in his character.

Despite what some may believe, Rebecca Starzl said, her father isn't rigid, and he gives people a fair hearing.

"If you're babbling about the weather, he'll tune you right out. But if it's something important, like should Raskolnikov be punished," he'll listen, she said, making reference to the character in Fyodor Dostoevsky's novel "Crime and Punishment."

Rebecca Starzl also theorized that he might be close to her and Joy because the two women share what may be a unique ability: "We're the only two people in the world who tell him no."

And even though he has mellowed, his standout traits remain.

He is still regarded as a complex man. George Werner, the former dean of Trinity Episcopal Church and a longtime acquaintance, used to joke that he knew "11 of Starzl's 14 personalities."

Dr. Byers Shaw, chief of surgery at the University of Nebraska Medical Center and a Starzl trainee, summed him up as the most dedicated, frustrating genius with the biggest heart and most powerful single-mindedness he has ever met. "He's exceptional, there's no doubt about it, [because of] his brilliant mind and his relentless pursuit of the goals he sets for himself," Groth added.

Starzl needed all those traits to overcome the intense opposition he encountered as he tried to gain acceptance for liver transplants.

What kept him going in the face of so much skepticism?

"The real motivation was I wanted to treat diseases that couldn't be treated before," Starzl said. With a chuckle, he added, "One disease, that's all I really wanted. And it could even be an obscure one."

It turned out a little differently.

Liver transplants are now used to treat metabolic abnormalities; biliary atresia, a usually lethal condition in which bile-carrying ducts do not form; cirrhosis; and many other serious disorders.

And 33 years after he performed that first successful liver transplant, Starzl's legacy lives on in the sheer magnitude of what has followed.

Since that pioneer operation in 1967, about 5,000 liver transplants have been performed in Pittsburgh alone, and tens of thousands worldwide.

"The success of transplantation is bewildering, really," Starzl said, in part because so many people initially thought it was unnatural.

And even though he has been thinking about retirement, the new research into chimerism and the possibility of opening up animal-to-human organ transplants have delayed his decision.

"I think it requires tending for at least a short time," Starzl mused. "I'll do that."

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