Life after hepatitis C

Carl Mann,* a former missionary and pastor, led a quiet life with his wife and children ministering to the people of the Yukon-Kuskokwim Delta Region and the Kenai Peninsula. His hepatitis C diagnosis was a surprise. Finding out just how he became infected with the virus was another.

The hepatitis C virus is transmitted through contact with infected blood. Mann contracted the virus under unusual circumstances—related to a medical procedure at a private hospital. In the months following his surgery, Mann's doctor was baffled when his blood count was continually off. That doctor referred him to Dr. Brian McMahon, medical and research director of the Alaska Native Tribal Health Consortium's Liver Disease and Hepatitis Program, who finally diagnosed Mann with hepatitis C.

Drug use with contaminated needles accounts for slightly more than half of all infections, said Dr. McMahon. Blood transfusions were once a common means of infection, but in 1992, a test was developed that detects the virus in the blood. Transmittal via that method is almost non-existent today.

Mann's story sets him apart.

"I felt like I'd been sucker-punched," Mann recalled. "I'd had a triple bypass and I'd been through cancer. It tests your faith a little bit."

Living with hepatitis C, Mann became more cautious, almost to the point of paranoia. He wore gloves when handling food, bandaged even the smallest cut and ordered his wife to steer clear of any blood. He didn't hide his diagnosis, but he didn't share it openly, either; he knew people viewed hepatitis C as a death sentence and didn't want to frighten them.

A death sentence was exactly what Susan Wamser felt she'd been handed when she was diagnosed in 2008. A former commercial fisherman, Wamser was rocked by the sudden deaths of her husband and brother and used drugs to numb the pain.

"This deadly, horrible disease, just from one poke of a needle," she recalled thinking when she was given the diagnosis. "I was devastated."

Whereas Mann experienced no outward symptoms and had only a slow progression of liver damage (many hepatitis C patients develop cirrhosis of the liver), the virus took a toll on Wamser. She was constantly fatigued, in near-constant pain, nauseous and had no appetite.

Mann and Wamser both declined treatment beyond check-ups with their doctors. The only treatment option at the time had a 50 percent cure rate and side effects that mimicked the flu at best and, at worst, chemotherapy. Mann, who had undergone chemotherapy during a battle with non-Hodgkin lymphoma in 1990, wasn't eager to be ill for a year. Wamser's strain of the virus was so severe, she said, it was virtually untreatable with past treatments.

But then a new treatment became available—one that was shorter, had fewer side effects, promised a 95 percent cure rate and was effective even for Wamser's strain.

"When I heard that there was a drug that was going to cure me, I pulled myself up by my bootstraps," she said. "I started feeling that there's hope, so I didn't give up."

Wamser marked every day off her calendar for the full 90 days of treatment.

"I felt more and more alive with every pill I took," she said. "I knew I was (going to) live."

Now cured of hepatitis C for more than a year, Mann and Wamser's lives have changed both physically and mentally.

Mann, who retired in June, purchased an RV so his wife can "chase the colors come fall." He'll be spending more time with his family—he has two grandchildren in North Carolina and four in Wasilla—something he enjoys a bit more now, since he no longer worries that he may infect them. He remains cautious when it comes to blood, but said he is not as paranoid as he once was. He also shares his story more freely.

"People need to realize that ordinary people [who] don't participate in risky behavior get hepatitis C too," Mann said. "It's not just the people who live on the margins who get it."

Being cured, he said, has also decreased his worry load.

"The biggest difference in life after [hepatitis C] is there are a lot of things to worry about, but my liver's not one of them," he said.

Wamser said that treatment literally gave her a second chance at life, and she doesn't intend to squander it. She has returned to doing things she enjoyed in the past but gave up while she was ill—playing the guitar and mandolin, writing music and poetry and cooking and baking, skills she picked up while working as a bull cook in Prudhoe Bay. She is spending more time with her children and extended family and has taken up painting. Best of all, she said, is the return of her energy levels, which allows her to keep up with her 2-year-old grandson.

"Sometimes I have to pinch myself to remind me that I am still cured," she said. "And if I ever have a bad day, because of going through this, nothing could ever bring me down again."