Hep C Stories

BILL

St. John’s, Newfoundland

When I was 24 years old and I was a junkie, I was admitted to the psychiatric ward because I was suicidal. It was there that the doctor told me that I was hep C-positive. He didn’t seem too concerned and I thought nothing of it. I had no idea what hep C was. I talked to a couple of my family members about it and found out that my sister and brother were hep C-positive, too. We used to share needles.

After four months I left the hospital in Alberta and moved back to Vancouver, where I lived for 16 years, because that was my comfort zone—down at Main and Hastings. I went back to using again. I was 110 pounds. You could see my ribs through my skin. I started to get jaundice—my eyes and skin were yellow, and people were noticing it and telling me I should get it checked out. That was about five years after my hep C diagnosis. I realized then that something was very wrong.

At that point I was living in the alleys at Main and Hastings and I just couldn’t take it anymore. So I moved back here to Newfoundland, where I’m originally from. I got a lot of good support when I moved back.

 

I got in touch with an incredible nurse named Dawn King. My shrink had referred me to her. Dawn was the kind of person who had no time for bullshit and would tell it like it was. She did some blood work and set me up for a liver biopsy, and then I started treatment with Pegetron [ribavirin and peg-interferon, which is no longer offered as a treatment for hepatitis C. It has been replaced by far more effective medications that are much easier to take].

It was horrible, the hardest thing my body ever had to go through. I was on that treatment for one year. I had to inject myself once a week and take pills twice a day for one year. I had a hard time eating, even getting out of bed. I couldn’t handle bright lights or loud noises. Six days out of seven I was sick; and on the seventh day I would have to inject again. I withdrew from everybody around me. I just couldn’t be around people.

During my treatment I was living with a couple of friends I knew from church. They rented out a room in the basement of their house to me. They were very supportive—they brought me meals and checked on me all the time to make sure I was OK. They gave, gave, gave to me without expecting anything in return. It was a blessing for me.

 

When I was first diagnosed and I told my brother and sister, all they said was, yeah, we have it too. Back then nobody really had a true understanding of what hepatitis C was. But today, it’s fantastic, there’s so much information about it and much better treatments.

Before I started treatment, my oldest brother did it and said it was too hard on him. After trying a few different treatments, he gave up. I grabbed some strength through him and said, “You can do it if I can do it.” I used that to motivate myself and try to motivate him.

Unfortunately, my brother took his own life, so he’s gone now.

I’ve had three family members do that over the past year and a half. I have four brothers and four sisters. From what I know, my one brother and sister were the only ones besides me who got into needles, but drug addiction and alcohol use run rampant in my family. We boys were all sexually abused at the orphanage, and the girls were in foster homes where they were abused, too. I’m trying to become a voice, so if the rest of them hear me getting it together, they will maybe live a bit longer and have some hope, too.

Only when I moved back to Newfoundland did I start telling people about my diagnosis. Everybody I was associated with in B.C. was an IV drug user. Most of them had hep C too. (And there was a lot of HIV and AIDS. Luckily I didn’t contract HIV.) They weren’t too concerned about it, and neither was I. My main concern was getting my drug of choice.

 

Before I moved back to Newfoundland and started treatment, I stopped using. I had to go on methadone for 18 months because I was a heroin addict—that’s how I got clean. That was way easier than the hep C treatment. Methadone takes care of body aches and cravings. People say they get high on it, but you can’t get high on it. It just levels you out. It was a fantastic help and I couldn’t have quit without it. I’ve been clean ever since. Now I’m in NA (Narcotics Anonymous) and AA (Alcoholics Anonymous). I play guitar, so I go around and help other addicts get outside themselves and play music for them. I’ll play anything new that comes to me but my favourites are Cat Stevens, Kris Kristofferson, CCR (Credence Clearwater Revival), the Eagles and Pink Floyd. I’ve also written a few songs myself.

After my year of treatment, my hep C went into remission. But lately I’ve been getting blood work and the tests show that I have hep C. Apparently I was only in remission. I’ll have hep C until I take the cure, and there is one now, so I’m looking into that.

Life’s been very good. Apart from my hep C, my health is so much better. But it took two years after I got off of hep C treatment to integrate back into society.

I’ve heard really good things about the new treatment. It’s a pill. I always thought it was ironic when I went on the pegetron that I got hep C from shoving a needle in my arm and then I had to shove a needle into my belly to try and cure it. But the new treatment is in pill form, which makes it so much easier. And the side effects aren’t supposed to be nearly as bad as what I went through. My goal is to take this treatment and be cured. My support worker at the Tommy Sexton Centre is looking into drug coverage for me.

 

My family of origin is so estranged from each other. We all grew up in foster homes and orphanages. But I’m lucky that I have contact with my own family now, I’m proud of that.

I envision seeing my grandchildren and children someday. I have two kids, a boy and a girl, and they live in Kelowna, B.C. They know about the addiction problems I had. They go to Al-Anon [groups for the family and friends of people with drinking problems] and totally understand where I’m coming from. They used to say, “Why dad, why did you ever leave?” And I had to explain to them that I had stuff going on in my own head, and I didn’t know how to be a father because I never had a father. They were 7 and 8 when I left, and now they have kids of their own.

We’re on Facebook with each other every day. I have two grandchildren, a boy and a girl, and I see them when we Skype. I was just put on the payroll here at The Tommy Sexton Centre (which houses the AIDS Committee of Newfoundland and Labrador), so I’m going to see what I can save up—I would love to go see them. They’re dying for me to come.

I don’t know my dad. I met him once when I was 10 and I got out of the orphanage; unfortunately, he molested me that night. I know where he is, but I don’t have anything to do with him. I pray for him today. That’s the best I can do. But my children love me and I love them.

I guess having hep C has affected me in a really positive way. I believe the lived experience is the best experience of all, no matter if we’re talking about—homelessness, HIV, hep C, whatever. I have that lived experience and want to be able to share it with people and let them know that they’re not alone. Because I felt alone a lot of the time.

I’m in the best health of my life, I can’t believe it. I was 110 pounds when I was in Vancouver, and I weigh 175 pounds now. I’ve got a lot of colour in my body and I feel very healthy. I eat better than I used to. I gave up pop and sugar and a few other things, and it was well worth it. I feel more and more healthy every day.

Bill's Advice for Others

Hep C is a very serious and spreadable disease. I would recommend that someone newly diagnosed find a supportive nurse or healthcare worker. I’d also give them all the pamphlets we have here at the AIDS Committee of Newfoundland and Labrador. And I’d encourage them to do treatment.