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Liver Disease Puts Brothers' Relationship to the Test

September 21, 2003|Michael Virtanen | Associated Press Writer

BOSTON — In the brightly lit room at New England Medical Center, John already wore faded teal scrubs when I returned from dinner. He had his Docksiders on too. "I remembered what Dad told me," he said wryly. "Keep your shoes."

Our father hadn't cared much for hospitals and had tried to slip out once or twice. He died in 1994 from Alzheimer's disease, only months after my brother's diagnosis with primary sclerosing cholangitis, the illness now destroying John's liver.

At 6 a.m., the doctors planned to wheel us into the operating room to cut out 60% of my liver and put it in him.

After the family tensions and medical obstacles of the previous six months, it was a relief to have nothing left but the transplant. If this were a roller-coaster ride, we'd have cleared the amusement-park gate, waited in line and ridden the cart to the top; it was all downhill from here.

"Tomorrow the adventure begins!" John said as he took a pill to help him sleep.

I lay awake in the next bed, for a while watching movies. Then I sealed short farewell notes to my wife and daughter in an envelope labeled "Do not open" and put it in the bag with my clothes. I'd spent weeks composing the few simple sentences.

Dying was OK as a prospect now. It was one I'd spent a lot of time considering. As surgery got closer, I relaxed about it. Everybody would move on in time.

The odds were I'd be healthy as ever in six months after my liver grew back to full size. And I'd have an older brother I could think about without a sense of sorrow.


We hadn't always gotten along. As kids, he pushed me around. That stopped, and one summer when I worked in the Adirondacks, he lent me his car.

Our daughters were frequent playmates until they hit their teens. Lately, though, although still living only 15 miles apart, we had drifted into our own separate worlds.

John, 51, figured that his disease appeared 30 years earlier, when he had little energy to play lacrosse in college. "I couldn't run," he said. The coach thought he was dogging it and benched him. It would be 20 more years before doctors identified the liver disease, with its jaundice, digestive problems and chronic tiredness.

John kept working as an investment analyst, supervising a multibillion-dollar property portfolio for a retirement fund.

With primary sclerosing cholangitis, believed genetic in origin, your immune system attacks your bile ducts. The bile builds up and damages liver cells. Cancers may develop. Your liver fails and you die.

John had surgery in 1994 that kept his bile flowing fairly well. But testing in 2002 showed that his tissue was too scarred to do it again -- and he was put on the transplant list.

With U.S. transplant centers getting only about 5,000 cadaver livers last year, about one-third the number needed, you had to be nearer death's door to get one. John's lab numbers were too low. The alternative was a live donation.


A tragedy last year made the prospect more unsettling.

Michael Hurewitz died three days after donating 60% of his liver to his older brother at Mount Sinai Hospital in Manhattan. I'd worked with Mike at the Albany, N.Y., newspaper, the Times Union. Friendly, funny guy.

At a memorial service, his widow, Vickie, vowed to stop the same thing from happening again. She tracked down other donor deaths. She sued the hospital.

In the fall, we called Vickie to talk about it.

She told my wife, Saundra, and me that her life was ruined; that she'd watched her husband grow terrified as he died; that she no longer spoke to his surviving brother and his wife, both physicians, as they went on with their lives. She told us not to do it, that the risks were understated.

Saundra knew things could go wrong. She'd had thyroid cancer as a young mother, which prompted her to return to school and become a registered nurse. Later, she had surgery and radiation treatments for breast cancer.

A skilled healer, with letters from patients attesting to her competence and compassion, she was frustrated with me. She wanted me to start doing research and seriously consider the consequences.

An autopsy showed that Hurewitz had inhaled bloody vomit caused by a bacterial stomach infection. The state temporarily halted Mount Sinai's live donations after finding post-surgical lapses in care, which the hospital says have been corrected.

At 57, Mike had been almost 10 years older than me. New England Medical Center had a good record.

It was easy to argue that his case didn't apply to mine.


We met the transplant team at New England Medical Center in December.

"He's not going to die tomorrow. He's not going to die next week," Dr. Richard Freeman, the team leader, told us.

Freeman, who headed a national committee that had recently retooled the eligibility list for cadaver livers, said John's status was low among the 17,000 people waiting. And the mortality rate for those waiting had dropped to about 10%, he said.

Still, he added, "sometimes the quality of life gets pretty bad."

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