By Tim Bonfield
The Cincinnati Enquirer
The music is returning to Terry LaBolt's life. Last month, the accomplished pianist and one of the longest HIV/AIDS survivors in Greater Cincinnati was dying. After living about 20 years with a combined HIV and hepatitis B infection, a tumor had formed on his already failing liver.
He was weak. His skin was sallow. And the glossy refurbished piano that dominates his living room in Oakley had been silent for weeks.
"I was so scared he was going to die," said Carol Sherman-Jones, a close friend. "Every time I'd kiss him goodbye, I'd think, 'Is this the last time?' Not anymore."
Terry Labolt was the city's first HIV/AIDS sufferer to receive a liver transplant.
(Tony Jones photo)
LaBolt, 48, has lived long enough for medical science to catch up to his illness.
On Nov. 19, LaBolt became the first HIV-positive person in Greater Cincinnati - and among just a handful nationwide - to get a liver transplant, a procedure that was considered unthinkable by most doctors just a few years ago.
In the early decades after AIDS emerged worldwide, people with HIV were rejected for organ transplants because they weren't expected to live long enough to justify it. But since then, antiviral therapies became so successful that liver damage has emerged as one of the leading causes of death for people with HIV.
Even so, HIV patients weren't transplant candidates until very recently because doctors feared that post-surgery antirejection drugs could interfere with HIV medications.
LaBolt's transplant was part of a clinical trial run by researchers at the University of California-San Francisco; the University of Cincinnati is among 14 participating medical centers.
The new study calls for performing 130 liver transplants on people with HIV over the next three years, including nine in Cincinnati. That's a sharp increase, but still less than 1 percent of the more than 15,000 liver transplants performed nationwide in the same period.
Friends and doctors say the study offers hope to many people with HIV. Others are concerned about adding new demand for an already-scarce supply of donated organs.
Nationwide, 17,679 people are listed on liver transplant waiting lists, according to United Network for Organ Sharing. Through September, 4,244 liver transplants had been performed this year.
Researchers say it is too early to tell how many people with HIV - up to 900,000 people nationwide - will get sick enough in a given year to need a liver transplant. Before this national study started, about 50 people with HIV got new livers from 1997 through 2002 from transplant centers in San Francisco, Pittsburgh, Philadelphia and Miami.
LaBolt says the surgery has transformed his life.
"For the last five years, all I thought about was how to get another year of life out of one day's worth of gas. Just getting up the steps took all the energy I had," LaBolt said. "But when I woke up from surgery, my biggest problem became what to do with all the energy."
From Broadway to TV
LaBolt's musical career has taken him to Broadway, on concert tours with Carol Channing and to performances on a variety of television shows.
He taught musical theater for several years at the University of Cincinnati's College-Conservatory of Music. And until recent months, LaBolt occasionally performed at local fund-raisers and events.
LaBolt stayed alive by taking at least 12 different medications to control the viruses attacking his body and to prevent a litany of opportunistic infections that once were common killers of people with HIV.
Thanks to all those pills, LaBolt lived long enough that his hepatitis infection became a more immediate threat than his HIV.
He said he was crushed when told by a doctor that he would never qualify for a liver transplant.
To ease the burden on his failing liver, he followed a strict diet. Low sodium. No more that 60 milligrams of protein a day. Even so, his health was steadily failing.
Now, LaBolt is relearning how to live.
"I don't know how to just eat freestyle. I still want to count something," LaBolt said. "Just inhaling one breath is like 100 times the oxygen I used to get."
Almost as soon as the new clinical trial was launched, LaBolt heard about the study from doctors who had been treating him. He moved rapidly up the organ transplant waiting list because a tumor had formed on his liver.
Now, LaBolt is expected to have as good a chance at long-term survival as any other liver transplant recipient.
"This study challenges a lot of assumptions," said Dr. Ken Sherman, a liver disease expert who is coordinating UC's role in the national study. "As long as the patient does not have active AIDS, they can be transplanted. Life expectancy for HIV-positive people is not different from other transplant patients."
Liver failure a threat
When AIDS emerged in the early 1980s, there were no effective treatments and nearly all those who were infected died within months or a few years of becoming sick.
LaBolt says he has seen dozens of friends and co-performers die from AIDS. But thanks to a variety of new medications, he lived on.
"The science was changing almost every day," he said.
Because treatments have improved for other causes of AIDS-related death, liver failure has become a leading problem for people with HIV, said Dr. Michele Roland, a researcher at UC-San Francisco and co-director of the 14-center study.
Roland said 23 percent to 33 percent of people with HIV also have hepatitis C. Another 9 percent - like LaBolt - have hepatitis B. Meanwhile, liver damage is a potential side effect of nearly all the most common HIV-control drugs, she said.
While quite different from each other, both hepatitis viruses can be transmitted in the same ways that HIV spreads - by exposure to infected blood and bodily fluids during sexual contact, sharing needles during drug use, and from blood transfusions (primarily in the years before expanded testing of donated blood).
The goal of the new study is to pin down which HIV-control drugs work best with post-transplant, antirejection drugs and which medicine combinations should be avoided.
Right now, many transplant surgeons are not familiar with the complications of working with patients who have HIV, Sherman said. This study could develop recommended sets of medications that will help more transplant centers become comfortable taking on HIV-related cases, he said.
Limited organ supply
While gaining access to liver transplants may be good news for people with HIV, it also raises questions about the increased demand that could be placed on an already limited supply of donated organs.
Ethical debates about organ transplantation have long been tangled in judgments people make about other people's lifestyles.
Should prisoners get organ transplants? They have. Should people who lived a life of alcohol abuse or drug addiction get a transplant? They often do, including a controversial case in 1994 involving singer David Crosby, who had hepatitis C and a history of substance abuse.
In some cities, HIV patients seeking organ transplants have led to public battles.
Randall Terry, president of the Florida-based Society for Truth and Justice, said people with HIV should not be denied access to organ transplants.
"The Christian church has provided medical care for centuries to people, many of whom had illnesses or injuries as a direct result of improper behavior," he said.
But Terry does say questions should be asked about whether transplant recipients are still engaging in high-risk sexual acts or injected drug use.
"There should at least be a discussion about whether the behavior that brought about the illness has been put into check," Terry said.
In Cincinnati, there hasn't been any controversy about HIV patients getting organ transplants.
"The waiting list for organ transplants has been growing every year since 1986. But your chances of getting an organ transplant haven't changed that much with this study being in place," said Mark Somerville, assistant director of the LifeCenter Organ Donor Network.
Sherman, Roland, Somerville and others say it would be outright discrimination to prohibit HIV-positive people from receiving organ transplants.
"Where would you draw the line? Should people be denied heart transplantation if they had poor eating habits that contributed to their heart disease?" Somerville said.
If there is concern about organ supply, then the response should be to encourage more people to be organ donors, says Pamela Myers, a Tony-nominated vocalist who lives in Pleasant Ridge and has known LaBolt for years.
"The family that donated that organ are wonderful people," Myers said.
Now, just a few weeks after a major operation, LaBolt has started playing a few chords on his home piano. And he's thinking about how soon he can get back to work.
Not only does he want to get back to the stage, he wants to work more closely with others who have HIV.
"Some people look at me and see somebody who did something wrong to get AIDS. They might think that I wasn't deserving (of a transplant)," LaBolt said. "That's why it has been very important to me to be public about my HIV status. I like for people to know that there are people with HIV living all around them and that it's OK to touch the tomato that I touched at Kroger."
Kathryn Thompson, education coordinator for AIDS Volunteers of Cincinnati, said, "We're certainly very excited that somebody like Terry could get a transplant. It says that the medical community is looking at people with HIV in a different way than they have in the past.
"I've known Terry for nine years. I have never heard the energy in his voice that he has now," Thompson said.
"He will be an inspiration to others who may think they'll never feel good again."
Liver transplants and HIV
17,679 peoplenationwide are on official waiting lists for a liver transplant.
4,244 liver transplants were performed nationwide this year through September.
About 50 Americans with HIV received liver transplants from 1997 through 2002.
850,000 to 900,000 Americans are infected with HIV, 25 percent of whom don't know it.
Unknown: how many of those people will become sick enough to need a liver transplant in a given year.
Sources: United Network for Organ Sharing and Centers for Disease Control and Prevention
About Terry LaBolt
Profession: pianist/arranger/musical director
Assistant professor of musical theater at UC College-Conservatory of Music, 1987-1997.
Music director for several Broadway and national touring shows, including "Sugar Babies," "Hello, Dolly!" and "42nd Street," and as pianist for "The Phantom of the Opera," "Evita" and "Guys and Dolls."
Worked for years as musical director for Carol Channing, including a concert tour and performances on "The Tonight Show Starring Johnny Carson," the Jerry Lewis MDA Telethon and "The Merv Griffin Show," and on soundtracks for three episodes of "The Love Boat" television show.
Performed locally on many occasions, including concerts with the Northern Kentucky Symphony in 2000, stage director for performances of "Sweeney Todd" in 2002, and charity fund-raisers.
Diagnosed with HIV infection in 1987 and with hepatitis B. Estimates that infection occurred sometime before 1985, which makes him one of Greater Cincinnati's longest surviving persons with HIV/AIDS. Was recently diagnosed with a form of liver cancer.
Went public with his illness in 1991. Left CCM in 1997 as his health declined. Has been a volunteer for AIDS Volunteers of Cincinnati for several years.
Received liver transplant on Nov. 19 as part of 14-center clinical trial.
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