Hepatitis C survivors bond over advocacy work
In 1988 Lucinda Porter checked into a motel room and took a massive overdose of Tylenol.
Her organs began to fail and her liver was completely gone. She survived, but she needed blood transfusions. And six weeks later, she started feeling tired.
Eventually she was diagnosed with non-A, non-B Hepatitis. “Hepatitis C didn’t even have a name yet. It would be another year before it would,” Porter says in this week’s StoryCorps. Porter was joined in the Chicago booth by her friend and fellow Hepatitis C survivor Alan Franciscus.
Hepatitis C has been in the news a lot lately. An expensive new drug called Sovaldi has the potential to cure people of the disease. But the costs are extraordinary, and state Medicaid plans are still tyring to figure out how to pay for it.
Both Porter and Franciscus have been cured of the disease, but their experiences offer a window into the effects - both good and bad - that Hepatitis C can have on a person’s life.
Franciscus ran a support group for people living with the disease, and in time he invited Porter to write a monthly column for the group’s newsletter. Porter went back to school and became a nurse. And she continued to learn about the disease from Franciscus and others.
“One of the things we hear about Hepatatis C is that there are no symptoms,” Franciscus says. “Did you have any symptoms?”
“I did and I didn’t,” Porter says. “Like many people, you find out what the symptoms are and you find out later. And I think that was why meeting you changed everything because suddenly we were talking about it. And we compared notes and we found out that neither one of us could remember anything, we both had brain fog. And we were both tired…Everything changed.”
“Can you expand on that a little,” Franciscus asks, “about meeting kindred spirits and people we become so close to?”
“I remember one time working in the Tenderloin neighborhood of San Francisco,” Porter say. “I couldn’t do much, because I was a nurse walking around in San Francisco, It wasn’t like I had a mobile van with me. I was with other outreach workers. But I got to make a difference for that moment. I got to look in their eyes for that moment.”
“And here we are, we’re both cured,” Porter continues. “We both went through treatment and both of us continued to do advocacy while we continued treatment.”
Treatment for Hepatitis C can be variously depressing or agitating, depending on the drugs you’re given. Patients often are subject to either rage or malaise. But, Porter says, “When I’m open, it invites you to share your suffering. And we can carry it together.”
Even though she’s cured, Porter says, “I don’t want to forget the memory of it...and I want to help others.”