Life With a Dying Liver

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

The National Institutes for Health have appropriated $8.4 million this year for Hepatitis C study, a paltry sum considering the American Liver Foundation's assertion that treatment cost $471 million in nonfederal hospital charges alone in the United States in 1994, but a start nonetheless.

Meanwhile, many Hepatitis C patients try to educate themselves. Because they can find precious little information in the general media, they surf the Internet for articles and chat lines and pure hearsay. They seek out natural remedies. They gather at monthly support groups for liver-disease patients to exchange information and case histories. There are five such groups in Arizona sponsored by the Arizona Liver Alliance: two in Phoenix (at the Mayo Clinic and at Samaritan Transplant Services), one in Flagstaff, and two in Tucson.

But many of their questions still go unanswered.
"The problem is that everyone is seeing it from a different perspective," says surgeon Lawrence Koep, "and probably the CDC statistics are going to give you the best idea of whether it's truly an epidemic or whether we're just discovering it now because of our tests.

"But I'll tell you," he continues, "the people I see now with it, it's bad news. There's no way of turning it around and no way of curing it."

Despite the surge in awareness of the disease, at least in the medical community, the liver-disease support groups are teeming with people who were misdiagnosed.

Their doctors at first did not add up the vague symptoms--the persistent colds, the skin rashes, the unexplainable aches and pains. They told their patients that they had lupus or ovarian cancer. And when they suspected liver trouble, they raised their eyebrows.

"Doctors won't tell you this," says Don Dietz, "but I have talked to fellow patients, and it happened to me. The first time there's an indication of elevated liver enzymes [a warning sign of liver disease], particularly for middle-aged men, they blame it on drinking."

"If the liver enzymes are elevated, usually what the doctors will say is, 'Oh, you must drink. Are you doing substances? What over-the-counter drugs are you taking?'" says Tamara Rounds, a social worker at the Mayo Clinic. "It's not 'til they rule out quite a few things that they realize that they need to screen for hepatitis."

When Mickey Mantle died after a liver transplant last year, the press hammered on his legendary boozing, when in fact what killed him was Hepatitis C, which led to liver cancer.

Marcia, the Phoenix schoolteacher who had experimented with drugs 20 years ago, was first diagnosed as having lupus. When her school district changed insurance companies and she subsequently changed doctors, her new doctor screened her for Hepatitis C and performed a liver biopsy to confirm his findings.

Leslie Smith's diagnosis was like one of those jokes that begin "I've got good news and bad news."

For years she'd suffered from chronic fatigue and body aches and skin rashes.

"Not the kind of itch that you can scratch," she says. "It's inside your body and it's trying to get out. No one could tell me what was wrong for years. I was treated as if I were psychologically impaired. I was on Valium and Librium. Oh my God, it was devastating to me."

Finally, Smith decided to find a new doctor, sat him down and read him the sum total of her symptoms, and he said, "You're really sick."

His tests confirmed that she had Hepatitis C.
At first Smith felt relieved because she finally knew that she wasn't crazy. Then she realized that she was dying.

She doesn't know how she got the disease in the first place.
"I can play what-if games," she says.
Smith is 46. When she was in college during the 1970s, she spent a lot of time trying to rescue some cousins who were shooting up drugs. They lived in squalor, and she would take it upon herself to clean up after them, sometimes picking up cotton swabs with blood on them. The cousins kicked the habit long ago, and from all appearances are perfectly healthy, she says.

But she's not doing so well herself. She's now on the waiting list for a liver transplant, but because she has a rare blood type, she does not expect to receive one soon.

When she still had enough strength to teach, she would instruct her students on what to do if she passed out in class or had some kind of accident.

"Don't touch me," she would tell them. "Get the nurse."
"I cut my finger the other night and I put the knife in the sink," she says. "And then I got to thinking, 'What if my mom doesn't wash that knife properly?'

"I feel like a leper.

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