Advertisement

The Surgeon and the Stealth Killer

Scott Harris last wrote for the magazine about one man's struggle with Lou Gehrig's disease

To the unschooled eye, a healthy human liver is neither particularly ugly nor appealing. Brownish-red inside the body, it pales to a pinkish-purple once a surgeon cuts off the blood flow and removes it. You might mistake the liver for a lady’s evening bag if it didn’t glisten like something from the butcher’s case.

No other organ is so taken for granted. Small children understand that the heart goes thump, that the brain adds two plus two, that the lungs capture each breath, that other organs process food. The liver, meanwhile, cleanses the blood of poisons, makes protein and bile and does scores of other tasks, not all of which scientists fully understand. Human genius has created kidney dialysis machines and artificial hearts, but it has yet to mimic the life-force character of the only internal organ that can regenerate.

“The liver is an amazing organ,” says one specialist. “I don’t want to comment on other organs, but the heart"--a dismissive shrug, a sly grin--"the heart is a piece of muscle. It is a piece of muscle that pumps blood to the liver so that the liver can function.”

The body’s unsung hero only gets noticed when it starts to fail.

Advertisement

Now, however, it is faltering en masse, in tens of thousands of cases every year. Liver doctors, or hepatologists (hepato being Greek for liver), say these figures represent just the edge of a gathering epidemic of chronic liver disease. They blame the crisis on hepatitis C, a blood-borne virus so stealthy that researchers labeled it non-A/non-B hepatitis before finally isolating and christening it 10 years ago. Now the leading cause of liver failure, it affects more than 170 million people worldwide, including about 4 million Americans, many of them unaware for decades of the peril.

Treatments sometimes neutralize the disease before it inflicts too much damage. But many people will just get sicker and sicker until they wind up on the transplant list kept by the nonprofit United Network for Organ Sharing (UNOS). In early June, it contained 13,095 names, more than triple the number waiting for hearts.

This is where the havoc wrought by hepatitis C collides with another crisis: a critical shortage of donor organs. Almost 4,500 liver transplants were performed last year, yet 1,319 patients died waiting--double the death toll of four years earlier. Demand for organs, particularly livers, far outpaces the modest gains in donations. Over time, hope rests with biotech research aimed at cloning organs and at genetically altering animal organs to implant in humans. Even then, experts caution, it will be much easier to replicate the kidney, essentially a filter, or the heart, a glorified pump, than the multifaceted liver. Meanwhile, America’s triage system for transplantation will be on trial. The disparity between the need and the supply will worsen before it improves, compounding the pressure not only on patients but on doctors.

All of which hints at why, on a spring day in subterranean Operating Room 1 of UCLA Medical Center, Dr. Ronald Busuttil is thrilled to see a liver that is so purplish and plump and glowing with the promise of life. “Oh, that’s great. That’s just beautiful,” he says of the blob on a table in the corner of the room. It is, actually, only the right half of a liver. But to Busuttil, one of the world’s best transplant surgeons, the only thing finer than a healthy donor liver is one expertly cut in two, to save two lives.

Advertisement

A few hours earlier, this organ rested unscathed beneath the abdominal wall of an Orange County man who died tragically young. (Transplant protocol prohibits doctors from releasing a donor’s identity or cause of death.) With his grieving parents’ consent, transplant teams from hospitals throughout Southern California converged at the hospital. After one team removed the kidneys and before another took the heart, Busuttil’s colleague, Dr. Hasan Yersiz, divided the liver inside the body, then placed the halves on ice in picnic coolers for the drive to Westwood. If it had been rush-hour, Yersiz would have gotten a helicopter ride.

Inside OR 1, the “Pulp Fiction” soundtrack plays low, Dick Dale’s surf guitar washing over 73-year-old Julie Stein. She lies anesthetized on the table, abdomen agape with an incision the shape of an upside-down Y. (“We give them the Mercedes emblem,” says Busuttil, a car buff.) Down the hall in OR 17, a 62-year-old man is being prepped to receive the left half of the liver.

Busuttil examines Stein’s half, touching it with gloved fingers. “I like the color, the way it feels and everything,” he says. Focusing through loupes that magnify his vision 2 1/2 times, he gently tugs at the organ’s plumbing with forceps. “Oh, it’s a beautiful artery,” he tells Yersiz. “But I do think you should put the external link on it. Now where’s the right hepatic vein? Let’s put a vein patch on this.”

Before he can remove Stein’s liver, devastated by hepatitis B, Busuttil takes an urgent call. A doctor quickly explains that one of her patients, a 6-month-old boy, has taken a turn for the worse. Is there any chance the half designated for OR 17 could save this baby?

No way, Busuttil says into the phone. “It’s humongous. The lateral segment is huge. It’s too big. I’m not going to waste it.”

*

Know the difference between God and a surgeon?

God never wanted to be a surgeon.

Advertisement

“We do play God,” Ronald Wilfred Busuttil says matter-of-factly. “I mean, you don’t think you’re playing God, but you’re making a decision that determines whether that person lives or dies. Oftentimes, we don’t make the right decision. We put livers in people who are way too sick. We think we can do it--and they die, and the organ goes with them. Or else it could have gone into somebody else. So just deciding who an organ goes to, every time you do a transplant, you, in a sense, are playing God.”

If Busuttil is not the world’s most experienced liver transplant surgeon, he is close, fast on his way to his 3,000th transplant. In the 16 years since he stopped at a convenience store to buy a Styrofoam chest and ice for his first precious cargo, he has built UCLA’s liver program into the nation’s busiest. His influence extends far beyond Westwood. Busuttil launched a transplant satellite six years ago at UCI Medical Center and retains oversight duties there. He and proteges kept the transplant program alive a few years ago at Cedars-Sinai Medical Center, where Busuttil still holds the title of academic director. And as president of the American Society of Transplant Surgeons, this overachieving son of immigrants draws fire in the emotional debate over the nation’s organ allocation system.

“He’s a star. He’s world-class,” says Thomas E. Starzl, who performed the first successful liver transplant in 1967. How many other liver surgeons fit that description? “Not many. Two or three.”

Busuttil stands about 5 feet, 8 inches tall and has the trim build of a man who twice finished the New York City marathon and runs three to four miles a day. He is 54, with graying hair combed back and a manner that is by turns brisk and friendly. He plays a serious game of tennis and collects high-performance sports cars. His office decor at the Dumont-UCLA Transplant Center features a photo of him racing one of his Ferraris at Laguna Seca, an image that inspires jokes about Busuttil himself wanting to be an organ donor.

By all other appearances, however, Busuttil is a model of stability, a man of both science and faith, a Catholic who used to serve as a lector, and a husband who surprised his wife on their 25th anniversary with a lavish party at the Hotel Bel-Air. That night, the Busuttils renewed their vows before daughters Amber and Ashley and more than 100 guests. “My husband,” JoAnn Busuttil says, “never does anything halfway.”

At UCLA, “Dr. B” is a known workaholic, “addicted” to surgery, as one colleague puts it. Though sometimes impatient and demanding, Busuttil also seems well liked. Surgeon R. Mark Ghobrial describes his mentor as at once gutsy and very kind. Nurse Fong Chuu says her boss has mellowed since the day he rebuked her for a forceps fumble. “He said, ‘Fong, you do that one more time, I’ll chop your hand off.’ He claims he doesn’t remember.”

“Very intense,” Dr. Goran B. Klintmalm says of Busuttil. Now chief of the liver transplant program at Baylor University Medical Center in Dallas, Klintmalm and Busuttil are part of the generation of liver surgeons who trained under Starzl. Klintmalm and Busuttil didn’t write the book on liver transplantation. They edited it. The text, hefty as a family Bible and just $275 through amazon.com, contains 85 chapters written by more than 100 surgeons and hepatolgists from around the world.

“He’s very fast and quick in seeing the situation, in seeing the questions as well as the answers,” Klintmalm says of Busuttil. “He’s always busy with something. He has all these plans and ideas and thoughts. He is a visionary.” Which is not to suggest that Klintmalm and Busuttil always see eye-to-eye.

Advertisement

Transplant specialists work erratic hours, as many as it takes, responding as organs become available. Busuttil’s stamina is the stuff of legend: He once performed five consecutive transplants over a 28-hour stretch. But, associates say, he knows his limits. “He’s too much of a control freak to let his body get the better of him,” one says.

Of all the transplants, the liver operation is the most daunting, requiring delicate stitch work, or anastomosis, to link veins, arteries and the bile duct. The split-liver procedure is more challenging still. In a precarious “living-related” transplant this spring, Busuttil operated on a 4-week-old baby girl whose life hinged on receiving a piece of her mother’s liver, a segment that Busuttil described as the size of “half a piece of toast.” He maneuvered curved needles no larger than an eyelash to connect an artery one millimeter across. At this writing, mother and baby were doing well.

It takes an extraordinary ego, a profound self-confidence, to duel death day after bloody day. “First of all, you’ve got to absolutely love what you do,” Busuttil says. “Secondly, you’ve got to be absolutely committed to what you do. If you don’t have those two things, I think it’s difficult to have the confidence you need.

“And you have to have confidence. I mean, my God, you take a little baby that’s four weeks of age and you’re going to change its liver? You can’t go into that with . . .” He stops himself. “I mean, I do go into it with trepidation. I have a tremendous amount of trepidation every time I go into the operating room. If I didn’t, I’d be a little bit concerned about myself.

“But the overwhelming emotion is not trepidation. It’s concern for the patient, but with the confidence that you can get that job done. That you can do it. If you don’t have that, you’re not going to be very successful.”

That is the man of science speaking. But whenever Busuttil finishes a difficult operation and tells the patient’s loved ones “it’s in God’s hands now,” it is a prayer.

*

Inside or 1, faint wisps of smoke rise from Julie Stein’s abdomen, carrying the unpleasant odor of flesh seared by instruments that cauterize as they cut. Her charts show that anesthesia commenced at 12:15 p.m, with the incision made 47 minutes later. Now, at 2:51 p.m., Busuttil removes the mottled, diseased liver. Out with the old, in with the new, a liver 50 years younger than she is. Busuttil cradles it as if it were a newborn and places it on her belly. A med student holds it there as the scrub nurse hands Busuttil a suture to begin the first vascular connection.

Over in OR 17, a 62-year-old Ventura County man is getting his Mercedes incision, compliments of a young surgical resident. The patient, who later declines requests for an interview, is here because of hepatitis C. Like hepatitis B, it causes scar tissue that disrupts the liver’s blood flow. Many people contracted hepatitis via medical transfusions before it was added to the blood bank screening list, but the disease also has spread widely among intravenous drug users who shared needles. Also at higher risk are those who engage in tattooing, body piercing and unprotected sex. Vaccines have recently been developed for types A and B, but not C.

Whatever brought him to the table, the patient in OR 17 happens to be lucky this day. He’s the right blood type and stature to get half of the liver that the UNOS computer had designated for Julie Stein. Once Busuttil is satisfied with her progress, he leaves her and moves to OR 17.

The split-liver operation is becoming common, but not this kind of split. In most cases only the left lateral lobe, about one-fifth of the liver, is sheared away to save a child or a small adult. But this organ was large and healthy enough for Yersiz, with Busuttil’s OK, to divide virtually down the middle, for two adults. The transplant requires surgeons to split and rebuild the vena cava going into the heart.

Busuttil pauses in the hallway to considers a question: If a liver can be bisected to save two lives, could it be trisected to save three?

“Theoretically, it’s possible. Is it practical? I don’t know.”

Every operation is unique, and the one in OR 17 proves tricky. The scrub nurse works too slowly to suit Busuttil. She and the circulation nurse exchange commiserative looks. At one point, the resident steps away from the table. “This is a bitch of an anastamosis,” he says.

An oldies CD segues to the Ohio Express.

Yummy yummy yummy/I’ve got love in my tummy

“Change the music,” Busuttil orders.

*

If dozens are injured in a bus accident, paramedics and emergency room staff treat the most critical cases first. This is peacetime triage, and the moral issue is so clear it is scarcely an issue at all. In war, triage is tougher. Some soldiers are left to die so that more may live. Transplant triage in this era of escalating demand is even more complicated. Utilitarian philosophies diverge: Should the sickest always be treated first? Or is it wiser to try to get the most life out of each donor liver?

In a generous world, fewer people would die waiting, and their surgeons would be happier. Ron Busuttil would spend more time in the OR and less time debating other doctors. Goran Klintmalm wouldn’t feel so dismayed by all the political gyrations in medicine. John Fung, the outspoken chief of the liver transplant program at the University of Pittsburgh Medical Center, wouldn’t have suggested in a letter that Busuttil either “purposely or inadvertently misled” members of Congress.

The debate raging over equity in organ transplantation is a tribute to advances in surgical care. Yesterday’s miracle is today’s right. Yet as Busuttil plaintively told a committee in Washington in April: “I must again emphasize that until there is an adequate supply of organs, absolute fairness in organ allocation will be illusive and rationing these precious organs is a necessity.”

This time, Busuttil faced a panel formed by the Institute of Medicine to referee a highly politicized battle that represents the downside of progress. In the early 1980s, liver transplantation was so rare that only a handful of programs existed, led by Pittsburgh, Starzl’s base. Even before Medicare lifted the operation’s “experimental” classification in 1991, making the operation reimbursable--indeed, lucrative--and private insurers followed suit, hospitals had dispatched surgeons to Pittsburgh and other centers for training. Now, America has more than 120 liver transplant programs. The competition for patients and donor organs--generally pitting the big centers against the small--has often grown nasty, each side accusing the other of caring about the bottom line as much as the patients.

At issue is a Clinton administration initiative to revamp the triage system used by UNOS, which oversees 63 agencies that coordinate procurement and allocation. Critics say the UNOS policy fails the ethical ideal of first addressing the sickest patients because of the rule that requires donor organs to stay within the locality from where they are recovered. In a recent study, for example, the median wait for liver patients with type-O blood was 511 days in New York and 56 days across the Hudson River in New Jersey.

President Clinton heard about such inequities in a letter from an old college classmate who happened to be a major Democratic Party contributor and also had business dealings with the University of Pittsburgh Medical Center. Once the nation’s busiest transplant center, the center had been hard hit by the new competition and had long lobbied for reforms. The Department of Health and Human Services soon offered a plan to “put patients first” by allocating organs in a much wider geographic range--even coast-to-coast sharing, when feasible.

It contains ideals similar to those expressed in a 1993 letter to a key congressman written by Klintmalm and signed by Busuttil, Fung and a few of their peers: “Candidates for liver transplantation should have equitable access to organs, regardless of geographical location. . . . The issue of equitable organ distribution can be solved only by eliminating the local ‘priority of use’ principle currently in operation and by nullifying the current regional barriers to equitable access.”

Busuttil’s views have since evolved considerably. Last year, he helped persuade Congress to postpone the Clinton administration’s plan, after some testy verbal sparring with a Fung colleague over the viability of livers that travel long distances. In this often arcane, highly nuanced debate, it was Busuttil’s spin on statistical data that prompted Fung to question his intellectual honesty.

“John Fung and I have a fundamental disagreement,” Busuttil says. He switched sides, he says, simply because he became convinced that the administration’s plan to widen the geographic range would do more harm than good, especially given the progress in the split-liver procedures, an advance now ignored in UNOS guidelines. What good is equity, he asks, that results in more death?

Busuttil says he shares the conviction of many procurement officials that the local priority rule encourages donation. In testimony, he cited the example of a Compton hospital with a primarily African American clientele that had an almost 50% increase in donations after an educational campaign showed that organs would stay in the community.

Moreover, Busuttil says, “Any allocation policy that closes local transplant centers that represent a community will have a negative impact on donation.” With the hepatitis C crisis, he adds, policy should focus on how best to maximize organ use through such innovations as split-liver operations.

Busuttil advocates modest reforms that would eliminate “absurd” boundaries that keep New Jersey livers out of New York, or Fort Worth livers out of Dallas. At the same time, as the split-liver procedure becomes routine, he wants to see the risks of a wasted organ minimized. Though studies show that a donor liver deteriorates dramatically if it’s left “in the bucket,” or outside the body, for more than 10 to 12 hours, Busuttil would limit travel to about 500 miles as a precaution against logistical snafus that could imperil two lives.

This wasn’t Busuttil’s first flip-flop on an important issue. A decade ago, after Chicago surgeon Christoph Broelsch performed the nation’s first living-related liver transplant, Busuttil appeared on “Nightline” to express Hippocratic reservations. “It was the only operation I knew of with a potential mortality of 200%,” he explains.

A few years later, Busuttil began performing the operation himself, motivated in part by the effectiveness of laws requiring seat belts, motorcycle and bicycle helmets, and better child restraints. With fewer organs available, he explains, “I was starting to have babies die on my list.”

Busuttil much prefers splitting a dead person’s liver to a live one’s. He believes the latter procedure could be minimized if UNOS and transplant centers embrace an initiative favored by directors of major pediatric programs. It would mandate the sharing of all livers judged healthy enough for splitting, saving an estimated 1,000 lives a year.

Still, sharing seldom comes easily. One day a few months ago, Busuttil’s mood rode a roller coaster. A liver had been designated for a UCLA patient who, at that moment, was too ill to undergo surgery. Busuttil wanted to split the organ between another adult and a child awaiting surgery at UCLA. UNOS protocol, however, dictated that it go to the next person on the local list, a patient at another Southern California hospital. Doctors there--Busuttil is too diplomatic say who--refused to split the liver.

*

It is 6:40 p.m. when Busuttil exits OR 17 to check on Stein. Again, he reaches into her gut, feeling the liver and its new connections. “Boy, it sure feels good. The artery feels terrific. The portal vein is just fine.” He checks a tube. “It’s making bile. No question about it, it is making bile.”

Pleased, he returns to OR 17. A little after 8 p.m., he leaves the patient in the care of his colleagues. By 8:20, he is on rounds, starting in the intensive care unit on the seventh floor. Some people here are waiting for livers, others are recovering from transplants. A man named Doyle greets him: “Thank you once again for saving my life.”

Busuttil moves through another wing, checking on post-op patients. One is a man who had a tumor removed by Busuttil this morning, before he performed the liver transplants.

Rounds end in the pediatric ICU. Busuttil seeks out the baby whose condition, a failure of the bile ducts, earlier inspired the urgent call to the OR. The little boy is a pitiful sight, his stomach swollen by internal bleeding, his mother by his side. She had been medically disqualified from providing part of her liver, and the father’s blood type did not match. Every doctor and every nurse who sees the baby wears a grim expression.

The next day, an organ becomes available. Doctors warn his family that, even with the surgery, his chances are 50-50 at best. The transplant is performed. Within 24 hours, he dies.

*

It is the first Tuesday of the month, time for Journal Club. Ron Busuttil is known for throwing a good Journal Club, opening his home to colleagues and students for an event that is part party, part academic soiree. Tonight, tacos and enchiladas will be munched after discussions on such research papers as “Brain death and its influence on donor organ quality and outcome after transplantation.”

Like its Bel-Air neighbors, the Busuttil house is impressive, large, beautifully landscaped and handsomely furnished. If the owner has done good, he has also done well. The home is all the more impressive considering where Ron Busuttil lived at age 4.

It was, he says, a “little hut” next to an orange grove in Florida, the place where Rowland and Mora Busuttil settled after emigrating from Alexandria, Egypt, their son’s birthplace. They were British subjects of Italian and Maltese ancestry whose families had been in Alexandria’s cotton trade for more than a century. Amid the Arab nationalist uprising, they fled in 1949 with, their son says, only a few hundred dollars and the clothes in their suitcases.

Rowland Busuttil found work packing fruit as he set out in pursuit of the American Dream. Next came a job washing cars at a Hertz outlet. Within a few years he was managing the place, and ultimately opened his own car dealership. The family’s ambitions and work ethic extended to their son: “I was programmed to be a doctor. I can’t remember a time when I ever wanted to be anything else.”

At Journal Club, Busuttil is both host and ranking sage. When conversation inevitably turns to the organ shortage, he tells of pending Pennsylvania legislation that seeks to reward families who donate organs by providing $300 toward funeral costs. He thinks other states should follow the lead.

A fellow surgeon then raises a question: Do you favor living-related donation?

Of course, says Busuttil.

“How about living-unrelated?”

Well, Busuttil says with a shrug, if there’s a willing donor . . .

“How about living-unrelated donation with--"

“With a financial incentive?” Busuttil interjects, anticipating correctly. In some developing countries, poor people have been known to sell one kidney to the ailing rich.

Busuttil’s answer is no, absolutely not. Donor organs must remain gifts, not a commodity in a marketplace. Yet as more patients become desperate, such questions may be hard to dismiss.

“‘It’s a slippery slope,” Busuttil says later. “Very slippery.”

*

It is four weeks since Julie Stein received the liver she wasn’t sure she wanted. So many friends had said: You’re too old for that operation. Why subject your body to that? “My sister and I tell her she needs to reevaluate her theory of age,” says daughter Elsie Tokko. “In the Asian culture, you are old in your 50s, and in your 70s, you’re ancient,” she says. “But if you’re capable of doing things, why not do it?”

Her mother has moved into an apartment near UCLA during her recovery. Julie Stein, a native of Korea, has two daughters, five grandchildren, one great-grandson. She is 73 but looks 60. A regimen of drugs is keeping her body from rejecting her young liver. So far, it’s functioning beautifully.

How old is too old for a transplant? This is another among many questions that will grow louder as the waiting list grows longer. Should parents receive priority over the childless? Should people who abused their livers with alcohol or drugs be forgiven or punished?

Only God knows, perhaps. But surgeons will decide. As for Julie Stein, consider that she devoted 14 years caring for her bedridden mother. Then her husband was stricken with Alzheimer’s disease, and she spent six years nursing him at home until his death.

As the effects of her hepatitis B worsened, she decided to listen to her thoroughly Americanized daughters instead of her Korean friends. She was stunned to learn when her turn came that she would receive only half a liver. Later, she would meet the wife of the man who received the other half, and was pleased to hear he was also doing well.

No, she didn’t know anything about the young man whose liver they share. It’s sad to think about how she has benefited from another family’s tragedy. Yes, she’d heard that Dr. Busuttil had a good reputation. When he saw her in ICU, he was upbeat. “You have good DNA,” he told her. It was, she says, a funny kind of compliment. He seemed very nice.

“Now I feel pretty good,” Julie Stein says. “I feel like I am living.”


Advertisement