Life With a Dying Liver

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

One day, Don Dietz was a healthy 52-year-old on an eight-mile bike ride, and the next day, he was bleeding to death from an illness he'd never heard of.

It was December 1991, and Dietz had just flown in from Lubbock, Texas, where he was a professor of Spanish literature. Dietz's wife, Kathy, had already moved to Tempe, and Dietz was hoping to find work here as well.

He'd just had a complete physical examination at his university's medical school in September, and he felt healthy--until that morning when he couldn't raise himself out of bed. Kathy called an ambulance, and the emergency-room doctors found that he was bleeding profusely from his esophagus into his stomach, but they weren't sure why.

Dietz spent Christmas and New Year's in the hospital, and, without a good explanation, his gastroenterologist discharged him and told him that he would get better. He didn't.

He was wasting away, losing upper-body mass but getting thicker and thicker around the middle as his abdomen mysteriously filled with fluids.

"I looked like I was 94," he says, except that he seemed to have a great tan, even though he wasn't spending much time in the sun; he later realized that he was jaundiced.

He went from specialist to specialist, trying to find out why he looked and felt so bad. No one knew. One prominent gastroenterologist suggested he find a house near a hospital in case he hemorrhaged again.

Finally, the next April, when he was too weak to walk from his front door to the sidewalk--his wife had to roll him in a wheelchair--he checked into the Mayo Clinic in Scottsdale for a battery of tests. Within a week, doctors there found the problem.

Don Dietz had Hepatitis C, had had it for decades, and a liver biopsy confirmed that it had completely destroyed his liver. He had two choices: get a liver transplant or die.

"My wife and I cried all the way home from the Mayo Clinic," Dietz remembers. "I thought, 'Jesus Christ, you've got to be kidding!'"

Hepatitis C is a blood-borne disease that slowly strangles the liver. It's prevalent among intravenous drug users who share needles, and until accurate screening tests were perfected in 1992, it struck people who had received blood transfusions. Dietz fit neither of those categories, and he could only guess that he had contracted the disease in 1983 after being given a flu shot by a Catholic priest at the university in Ecuador where he was teaching. Perhaps the needle was dirty, he thought, but he couldn't be sure.

Dietz underwent a liver transplant in July 1992, and today he is healthy and active.

For now.
Hepatitis C is incurable, and the best Dietz can hope for is to buy another ten or 20 years of life before the new liver develops cirrhosis and hardens and ultimately fails as well.

Don Dietz had never heard of Hepatitis C, and chances are you haven't, either, even though the Centers for Disease Control estimate that about 3.9 million Americans have the disease, about three times the number of Americans infected with HIV, let alone who have full-blown AIDS.

It's not as sexy as AIDS, perhaps, less titillating. It's easier to consider AIDS and wag a scolding finger, knowing that we don't engage in the kinds of behaviors that get people in that kind of trouble. But the scary part about Hepatitis C is that it's much less discerning in whom it strikes.

One third of Hepatitis C patients got it from blood transfusions and one third from IV drug use, even if they never became drug addicts.

Marcia (not her real name) experimented with drugs when she was in graduate school in the late 1970s. She was living with a musician, and they would shoot up cocaine with friends. Marcia fled the drugs and the boyfriend, started a career as a schoolteacher in Phoenix, married and had children. Because she had never been addicted to drugs and had never overdosed--or had never even gotten sick--while using them, she thought she had gotten away with it. Nearly 20 years later, after confounding doctors with her frequent fevers and nausea, she learned that she hadn't.

"We often hear, 'If I had only known, I wouldn't have done this,'" says Lea Ann Nelson, a nurse at the Mayo Clinic who is the co-leader of a support group for people with liver disease.

Of course, that knowledge rarely stops anyone from smoking.
Many of the patients who present with Hepatitis C are in their 40s. Which doesn't mean that it's a baby-boomer disease so much as it's a disease that you can catch in your teens and 20s, the years when people are most prone to experiment with "bad" behaviors, and the symptoms don't show up until your 40s.

Most frightening is that the remaining third of Hepatitis C sufferers never misbehaved.

"There's about 35 percent of the people who don't have an identifiable risk factor," says Dr. David Douglas, a liver specialist at the Mayo Clinic.

"I've got one patient who's a teacher," adds Dr. Lawrence Koep, a surgeon at Samaritan Transplant Services. "She's married, monogamous, never did drugs, no transfusion. She has such a clean lifestyle that she could be a nun, and still she has it. We don't have a clue how she got it."

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