Life With a Dying Liver

Seven years ago, doctors gave Hepatitis C its name. It had already condemned 3.9 million Americans to limbo.

Even under the best of circumstances, interferon is the proverbial cure that is worse than the disease. Marcia, the schoolteacher who experimented with drugs, has been taking interferon for a year. And though it has kept her liver enzymes at near-normal levels, her journal of the first months taking the drug is a litany of migraines and nausea and days missed from work. This fall, Marcia will take part in a study at the Mayo Clinic that will combine interferon with an antiviral medicine called ribavirin. She remains ever hopeful that something will give her back her health.

But if the disease progresses to cirrhosis, the fluids that used to filter through the liver begin to back up in the abdomen. And as the levels of ammonia rise in the bloodstream because the liver can no longer convert it to urea, the patients can become increasingly addled.

Leslie Smith recalls standing in the produce section of a supermarket, suddenly unable to remember where she was, how she got there or how she could get out.

As a last-ditch effort, doctors can install a shunt in the liver to allow the fluids to pass through it without backing up. But this is a temporary measure, and when the liver fails completely, it must be replaced.

Assuming a liver can be found. Assuming the patient cooperates. Kevin Timothy, 42, a carpenter from Phoenix, got Hepatitis C from a blood transfusion in 1984. He'd also been an alcoholic--alcohol can accelerate the progression to cirrhosis--but claims to have controlled his problem. Until a year ago, he was a candidate for liver transplantation. But then he lapsed; he drank a beer in a moment of weakness and it turned up in a blood sample. Not wanting to waste a donor liver on an alcoholic, the doctors removed him from the liver-transplant waiting list.

"I know I'm dead," he says.

Before 1989, the only two hepatitis viruses that had been identified were A and B, and everything else fell under a catchall heading of non-A, non-B. Researchers now feel confident that the majority of those non-A and non-B cases were in fact caused by Hepatitis C.

But in 1989, the C virus was isolated and identified, and a year later, a test was found to detect the HCV antibodies in blood samples. In 1992, a more dependable antibody test was created, and more recently scientists have developed a test to measure the levels of the virus in the blood and identify the variant strains, or genomes, of the virus.

"I don't think it's a new disease," says Dr. Robert Clark, an infectious-disease specialist at Saint Joseph's Medical Center in Phoenix. "The technology got better, that's all. The disease is too newly described to know much about it.

"I have about 300 papers on Hepatitis C, but let me tell you, the stuff is rudimentary, and you can't answer simple questions like, what is the incidence?"

The CDC figure of 3.9 million is merely an estimate that amounts to roughly 1.5 percent of the general population.

Because Hepatitis C can now be excluded from the blood supply, one third of potential new infections should be prevented. And with increased education about needle-sharing, the segment that infects itself through drug use may shrink in the future.

While preferring to refer to the disease as a "major public health problem" and not an epidemic, Dr. Craig Shapiro, an epidemiologist at the CDC, says, "We don't have a good handle on the prevalence of the disease."

There's even less of a handle on the extent of infections in Arizona.
The Arizona Department of Health Services lists 52 cases of Hepatitis C in its 1995 Communicable Disease Summary, but that figure only comprises those few reported cases that fit narrow criteria for describing the disease.

There are certainly more cases out there. For example, United Blood Services, the blood bank that serves most of Arizona, excepting Tucson and southeastern parts of the state, has turned up 1,700 cases among would-be blood donors, 300 to 500 a year since the screening test became available in 1992.

As Dr. Thomas Wiltbank, medical director for United Blood Services in Arizona, points out, blood donors are among the healthiest subsets of the general population, and only make up about 10 percent. And so reason dictates that the figures are higher in the remaining 90 percent of Arizonans.

"The number of people with the virus is larger than we ever expected," Wiltbank says.

The same holds true for the nation as a whole.
"In the last two years, I've seen our calls increase dramatically," says Ari Maravel of the New Jersey-based American Liver Foundation. "We get about 150,000 calls a year, and about half of those are concerning Hepatitis C."

Susan Foster, a social worker for Samaritan Transplant Services who runs a liver-disease support group on behalf of the Arizona Liver Alliance, claims that over the past eight years, her Phoenix group has been increasingly dominated by Hepatitis C patients.

Physicians tend to regard the disease with doctorly detachment, because Hepatitis C, in their minds, is just a new name for an old disease. They still can't agree on some basic parameters, like whether it can be spread through sexual contact (it seems to spare the monogamous spouses of Hepatitis C patients, but afflicts people with multiple sex partners) and how frequently the virus clears up and how frequently it kills.

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