Hepatitis C: (Part 3) Living With Uncertainty -- But Living
A 65-year-old antiques dealer traces her case of hepatitis C to IV drug use in the '70s, but has made her peace with the past. Her liver, moreover, only shows slight damage. Here's how she and other hepatitis C patients are getting on with their lives.
While outcomes with hepatitis C are uncertain, there's no doubt about transmission. Direct blood exposure is the most efficient mode.
Fortunately, the advent of highly sensitive blood-screening tests in 1992 has pretty much eliminated the risk involved in blood transfusion. Health care workers still face some risk, but actual transmission of HCV is small. About 1 percent of health care workers exposed on the job become infected.
"HCV is the single most important occupational risk at San Francisco General Hospital," says Rita Fahrner, coordinator of the occupational infectious disease program for the San Francisco Department of Public Health. "It's an underappreciated risk." Some 40 percent of the patients seen at the hospital are infected with hepatitis C, according to Fahrner. But out of 1,000 exposures over a decade, she explains, there's only been one case where a health care worker became infected with the virus. The virus is seldom transmitted through casual human contact, in fact, and most studies show no hepatitis C in body fluids other than blood. Moreover, investigations of sexual transmission have conflicting findings. Most studies of longtime spouses of HCV-positive individuals in the United States show on average that only about 1 percent are infected.
For this reason, neither the American Liver Foundation nor the Centers for Disease Control and Prevention encourages people with HCV or their mates to change sexual habits or to use condoms in long-term monogamous relationships. Studies indicate that a partner who hasn't acquired the virus by the time the infection is diagnosed probably won't get it, says former ALF president Alan P. Brownstein. "But nobody can say it's absolutely not going to happen. And because the risk is not clear cut, people who are infected should discuss whether to take precautions with their partners." Taking precautions may be particularly important for anyone whose immune system is depressed. Viral levels of hepatitis C generally rise in response to immunosuppressive drugs (a particular problem for transplant patients), for example, or in response to steroids. Some experts theorize that such increases make it more contagious by upping the likelihood that it will turn up in semen or saliva.
As with HIV, the mode of transmission may carry a stigma. A transfusion is okay, but there's a shame factor with drug use. Doctors may thus find it difficult to get straight answers from patients who have used drugs in the past, especially if the physician's tone suggests even a hint of judgment or criticism. "You don't know what the patient doesn't tell you," says Dr. Bruce Bacon, chief of gastroenterology and hepatology at Saint Louis University School of Medicine. He advises health care workers to take a complete patient history and to be open and accepting about past activities.
Many patients suffer psychological anguish over what seemed -- 30 years ago -- to be a harmless good time. After discovering through blood tests for another illness that she has hepatitis C, Suzette Rooney,* a 65-year-old antiques dealer, is struggling with her emotional response to how she became infected. She used IV drugs in the early '70s and now believes that was the source of her illness.
"I had hoped that I belonged to the you-don't-know-where-you-got-it group," she says. "Only today I realize I may have put myself at risk, that I may not have been honest with myself."
Making a Diagnosis
Liver inflammation, whether brought on by alcohol abuse or hepatitis C, can cause the proteins known as liver enzymes to leak into the blood. For this reason, elevated liver enzymes that show up in a blood test are a signal of liver damage. So when such proteins show up in a blood chemistry series, or when a screening test detects HCV following an attempt to donate blood, selective amnesia like Rooney's may add to the shock. One patient tested positive when he went to stockpile his own blood as a safe supply for elective surgery. Others discover they are carriers when they donate semen.
While treatments are limited, clinicians agree that early diagnosis can help patients avoid compounding the problem with alcohol use. Christine Morosky, 42, a nurse who probably acquired HCV on the job, says her infection went undiagnosed for years as she became increasingly exhausted. Some physicians made her feel "it was all in my mind," she says. Even when a test showed elevated liver enzymes and she asked for a full range of hepatitis tests, her doctor requested only the tests for A and B. The diagnosis of chronic active hepatitis C five years ago was a relief, she says. "It gave my illness a name, and it gave me an opportunity to assess my life and my values," she says. She's since tried to eliminate unnecessary stress from her life and to foster acceptance of the disease.
"The biggest problem is not that it kills people," says Teresa Wright, chief of gastroenterology at the San Francisco Veterans Affairs Medical Center. "It's the morbidity of this virus. It's how it harms their lives. The fatigue it causes, the worry about transmitting it. That's what's difficult to measure: the impact on people."
Compounding this torment may be the conflicting or incorrect advice patients get from their doctors. A few years ago Stanford hepatologist Emmet Keeffe saw a patient whose physician had limited knowledge of HCV. "He had told her it was highly infectious and that she was likely to infect her husband and children. She stopped making love to her husband and started to cook all of their meals wearing gloves," says Keeffe. "Well, the focus of my consult was to say, 'Take off your gloves, and get back into bed with your husband.'" Or, instead of false information, patients may receive virtually no information. "If they know they have cirrhosis, they know that's a bad thing," Bacon says. Sometimes, he adds, they've been told the illness is a death sentence.
"I'll never forget one lady who said, 'Am I going to die?' And I said, 'Yeah, eventually. We're all going to die of something.'" Focusing on the positive, Bacon lays out the lifestyle changes patients can make to raise the probability of living full healthy lives.
Treating the Condition
Treatments are more effective at suppressing hepatitis C than they were even five years ago, but researchers still have a long way to go. The standard drugs used to battle the virus is a combination therapy involving pegylated interferon and ribivarin. But it, like its predecessors, can cause depression, anxiety, and irritability, and sometimes makes patients feel sicker than the viral infection does. Interferon, which interrupts viral reproduction and boosts the immune system, is usually given together with ribivarin for 12 to 48 weeks. Recent studies show that pegylated interferon together with ribavirin clear the virus in up to 50 percent of patients who had treatment for the first time. For people who don't respond to treatment, a liver transplant is a lifesaving option, but donor organs are in short supply. The procedure is also the most complex of single-organ transplants and one of the most expensive.
Frank Vanoli, who is on his second replacement liver, calls himself a lucky man.
Vanoli, 63, acquired C from a blood transfusion in 1970 and got his first transplant in February 1989. The surgery, he says, was "a piece of cake." He was back to full-time work as a forklift driver within seven months. Six years later a dental hygienist who was cleaning his teeth noticed jaundice. Within a month Vanoli had another liver transplant -- and a new kidney. (Doctors discovered that the drugs he'd been taking to protect his first transplant had destroyed his kidneys.) This liver surgery wasn't so easy. When he came to, Vanoli says, he felt so wretched he thought a light reflector on the ceiling was the light at the end of his life.
And then he got lucky. Since that surgery, in 1995, no sign of the virus has been detected in his blood. His liver enzyme counts are normal. He feels great. He looks great. He continues to work full-time, and he's started a support group for transplant recipients in Monterey County, California. So far his group has counseled 30 people through transplants. "I say, 'Don't be afraid. They can fix you up. Look at me. I feel so lucky to be alive.' "
Until science has more answers, people with HCV have to master the challenges of living with uncertainty. Cochran, who has no symptoms, hasn't been to a hepatologist for treatment or retesting since 1989. His wife and son have tested negative for the virus. Cochran likes to think that as a carrier of the virus, he may be among the lucky ones. "I even had a margarita the other night," he says. He is nonetheless careful with his blood and body fluids: He has his own bathroom, and he and his wife use condoms. Suzette Rooney is also optimistic; her first biopsy showed slight liver damage but no cirrhosis or cancer. Christine Morosky is working part-time in a hospital, where, she says, "It's been an opportunity to educate my peers."
Sadly, Wendy Corpening, who was waiting for a liver transplant, died in March 2001. According to her friends, she remained active and forward-looking until the end. Meanwhile, Leonard Seeff, senior scientist at the National Institutes of Health, is following up on those 50-year-old blood samples from Air Force recruits by collecting new samples from those who are still living. Medical records of the deceased recruits could show whether liver disease was a factor in these deaths, and Seeff plans to sequence the HCV he gets in current blood samples to see how it has mutated over the last 50 years. In another study he's looking at medical records and tracking about 6,000 people who contracted HCV through transfusions. His enthusiasm, however, may be overwhelmed in the end by time.
"This is such a long-lived infection that it outlasts most of us investigators. And, like HIV, it outsmarts us. One human lifetime is not enough to study it," says Seeff, who is 61 and sees himself approaching retirement age with many of his questions about HCV unanswered. He has, however, an ace up his sleeve: Laura Seeff, MD. "I've produced a daughter who's interested in hepatitis C," he says. "And she may carry on this work after I'm gone."
This special report was adapted from an article Horstman wrote for Hippocrates, a national magazine for physicians.
* These names have been changed.
Centers for Disease Control and Prevention. Hepatitis C Information for Health Professionals. http://www.cdc.gov/hepatitis/HCV/index.htm
Centers for Disease Control and Prevention. The ABCs of Hepatitis. http://www.cdc.gov/hepatitis/Resources/Professionals/PDFs/ABCTable.pdf
Seeff, Leonard B, Hoofnagle, Jay H., NIH Consensus Development Conference: Management of Hepatitis C, National Institutes of Health.
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Centers for Disease Control and Prevention. Exposure to Blood: What Healthcare Personnel Need to Know. http://www.cdc.gov/ncidod/dhqp/pdf/bbp/Exp_to_Blood.pdf
Follow-up phone interview with Rita Fahrner, former coordinator of the occupational infectious disease program and current nurse practitioner for the San Francisco Department of Public Health.
Terrault, Norah A., Sexual Activity as a Risk Factor for Hepatitis C Infection, Hepatology, February 10, 2006.
Lindsay, Karen, L, M.D. "Initial Results from the Halt-C Trial Presented at Annual Liver Meeting," HALT-C NEWS, A Newsletter for the HALT-C Trial, Volume 3, Number 1.
Gregory Everson, M.D., F.A.C.P., and Hedy Weingberg, Living with Hepatitis C: A Survivor's Guide, Hatherleigh Press, New York.