Liver Disease Puts Brothers’ Relationship to the Test

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.”

John and I listened, with our wives, on opposite sides of the conference table.

The surgeon, nurse coordinator and social worker outlined the alternative, with a waiting list of one: live donation.

There had been at least two deaths nationally among more than 2,000 live donors; another had died in Europe. Two others lost too much liver and went on the transplant list themselves.

All 28 donors at NEMC had survived, although about one-third had post-surgical complications, such as blood clots, bile leakage and infection. Livers regenerate to full size in weeks or months.

“Sometimes,” said social worker Michael Denapoli, “this is where people jump up and say, ‘I’m going to do it no matter what.’ ”

Nobody jumped up.

Denapoli explained that the recipient’s insurance covered donor bills -- typically about $50,000 -- and that was a deal compared to the cost of end-stage liver disease.

After John and his wife, Debbie, left, he added: There’s always a lot of pressure on potential donors to proceed, although it isn’t always obvious.

In phone calls afterward, our mother and sister listened but didn’t sound keen on what I thought was the good news about John’s chances for a cadaver liver.

It was my decision, each said.

*

Three days later, my brother and I sat at a coffee bar. I had set up the meeting at a neutral place, without our wives.

He hadn’t slept the night before, and there was a catch in his voice. Regardless of what Freeman said, John believed he’d do far worse without the right lobe of my liver. He thought that he might get so sick, he’d become ineligible for a cadaver liver.

“Why are you torturing me?” he asked.

John had never asked me to do it. And I’d first offered so long before that I couldn’t remember when -- maybe in 1997 after the first adult-to-adult live transplants, maybe after former pro football player Walter Payton died from the same disease two years later.

Honestly, I had begun wishing that someone else, anyone else, would volunteer. But that wouldn’t happen. Both his wife and our sister were ineligible because of their high blood pressure. Our mother badly wanted to, but at 78, she was too old.

But John didn’t need to know those thoughts.

“I don’t know why you’re so upset,” I answered. “I never changed from what I said I was going to do.”

*

As my medical testing proceeded through January and February, a heart arrhythmia was found, but turned out to be nothing serious. Liver volume was a bigger concern. Might I be left with too little to get through the first post-surgical weeks?

Dr. Mark Epstein, assigned as my advocate, estimated that my mortality risk was slightly higher than the usual 1%. In the transplant committee, he raised reservations.

Freeman studied outcomes at other transplant centers. Although my complications risk might be higher than the usual 30%, he believed that the mortality risk was unchanged.

The committee approved the transplant.

Freeman, who had done 28 such operations, would be my surgeon. Dr. Richard Rohrer would remove John’s liver and attach the new lobe. He’d done 27 so far.

Through March, John and I worked out -- on treadmills, stationary bikes, a college pool. I banked two units of blood.

For his birthday, I gave him a copy of the novel “Deliverance” with an inscription that we’d meet on the other side of our adventure.

*

On April 15, the morning of surgery, our wives arrived at dawn. The holding room slowly filled with staff and surgeons.

A housekeeper squeezed my hand. “You’re going to go to heaven for doing this,” she said. She didn’t mean right away. I looked at John as they prepared to put us under.

“You’ve still got your shoes,” I said.

“You got your shoes, you got your freedom,” he said.

*

I came fully awake with Saundra holding my hand, saying it went well.

John got out of surgery. The doctors said his liver had been worse than the lab tests showed, harder and lumpier. The timing was fortunate.

After two days, John left the intensive care unit. Blood tests showed that his new liver was working.

I turned yellow and initially had poor liver function, but improved.

John and I walked the hallways together, at first dragging IV poles. Inside two weeks, we went home. *

In June, John returned to work, a few weeks after I did. He still has regular tests and checkups, and takes about 20 pills a day.

One Saturday, he brought over the “Lonesome Dove” DVD and we watched all of it. He gave me a stainless steel Tag Heuer watch, identical to his, with a note: “Deliverance 4-15-03.”

“Thanks for making the adventure possible,” he wrote. “Your eternally grateful brother.”

I wear the watch every day.