HCV treatment isn’t like popping your HIV medication once a day – it churns your body and your head up. But, in time, you go back to normal and begin living your life again.
Hepatitis C virus (HCV) is an infectious virus that infects the liver. Usually aymptomatic, within 10-30 years, it can cause cirrhosis – scarring leading to loss of liver function, liver failure and ultimately liver cancer. It it thought to be transmitted alongside HIV in 5-10% of cases but to many it is completely unknown. Unfortunately, to me, it is not.
After living in London for nine months, I sat in the chair in my doctors clinic while he tapped away at the computer, looking puzzled. “Did you know you had hepatitis C?” he said. “Er what? No, I didn’t”, I said with my head in my hands, tears running down my face. It was like being told I had HIV all over again, reliving the shock and fear that came with it. I suppose I was fortunate that I had some knowledge of it, whilst at the same time, knowing what I would have to do to ﬁx it. Education is not always a good thing.
My time in London had chewed me up, and I had moved back home, in a cloud of family tragedy and personal mourning, in a year, my life had been turned upside down, put in a blender and set on ﬁre it felt like. But I felt I had nothing to lose, my year in London had been an abject failure, my exams would have been a joke so I got myself withdrawn from university on medical grounds and went for my ﬁrst appointment at the Hepatology clinic at the Birmingham Queen Elizabeth Hospital.
I saw the doctor and he examined me and explained to me that I had the more difﬁcult genotype which means I had to be treated for 48 weeks, almost a whole year! That felt like an impossibly long time. He said that I’d be tested very regularly to check my viral load was going down and that if the virus didn’t respond to treatment after a certain period (a sustained virological response (SVR)), it would be stopped. Then what?
He went over the drugs I would be taking, subcutaneous (under the skin) interferon injections and sixteen Ribavirin tablets a day. Next, I saw a lovely nurse who ordered my blood tests and then a pharmacist who gave me a carrier bag with tons of boxes of pills, and a sharps bin. They showed me how to inject myself, I couldn’t believe it had come to this, but I was brave and stabbed my roll of fat, it was a bit sharp but totally ﬁne. She lumped another ton of boxes from the fridge into my bulging carrier bag and off I went.
Hyper-aware of how I was feeling all day, every tiny thing worried me, I knew everyone responded differently, some far worse than others, and it dawned on me gradually. My head ached, but not at the front, deep in the centre and I felt cold and shivery. After about nine hours, I was lying on the sofa with a blanket over me, no energy, pounding headache, shivering but hot to the touch as my immune system was forced into overdrive to cleanse my body of the virus. It felt like I was going into hibernation so I was in bed by 8pm and slept for ﬁfteen hours. How could I do this every week for 48 weeks? I’d run out of places to inject!
I awoke the next day, feeling like there was a lead weight in my head and inside me, I felt heavy, exhausted, sweaty, I looked grey. I’ve had hangovers but this was ridiculous. I thought however that I could probably deal with it for a year. But over the course of a few weeks, my body got heavier each time, took longer to feel like i could get out of bed. I remember staring at the wall, not caring if I actually got up or not.
My hair got thin and brittle, my skin was grey, the whites of my eyes went yellow as did my skin now and then, I had rashes everywhere, my gums were screwed and bled every time I brushed my teeth and just walking up the stairs or up a gentle hill had me out of breath. If the physical symptoms were all I had to face I wouldn’t have minded so much, I was doing it for my health and for my future, but it was the effects on my mind that were the worst.
It was all very subtle, creeping up on me very slowly, changing the way I thought and felt a drip at a time. It felt like my world was closing in on me, I didn’t want to see lots of people, I was happy to see my family and that was it. I felt like a 90 year old man in a 19 year old lad’s body. A widower for my old self.
And I was angry, furious at the people that had done this to me, venomous, burning rage inside, I wanted someone to be responsible, to pay for
inﬂicting this upon me. As I the anger grew I knew I couldn’t go on like this. I got in touch with Healthy Gay Life Birmingham (HGL) and got some counselling. When I met my counsellor; Julie, for the ﬁrst time, it felt like a Jerry Springer confessional, I went through the whole ugly story, my cheeks burning with shame. But she told me I had to be that honest, or the process wouldn’t work.
As the weeks went by I vented my anger, crying, sobbing, wanting to throw the chair against the wall, wanting to smash someone’s face in but the more honest I was, the more I felt heard and she listened, acknowledging my feelings, almost instinctively knowing how I was feeling. The whole time I wrestled with who was to blame.
I wrote a letter to them: “Dear Bastards”, it began, I gave it to them well and truly and then set ﬁre to it. In the end I managed to accept it was 50:50, it takes two to tango after all and I was happy with that. If it hadn’t been for her, I’m tearing up writing this as she was such a wonderful
counsellor, I don’t know where I’d be today.
After 48 weeks I was maintaining a SVR (Sustained Virological Response). Now came the wait, a six month check, a year check, an eighteen month check and a two year check. I started university, the six month check in the back of my mind. My hair improved, my rash disappeared, I wasn’t grey (or yellow) anymore, i was interested in people, the lead weights disappeared, I made friends too and started living my life again.
Then came the results. Thank goodness I was still clear of the virus. It was the same for the next three checks. When it came to the two year check, I was terriﬁed. Had it all been worth it? Thankfully it was and I could just get on with my life and not having to worry about saying, “I need to tell you I’ve got HIV, AND I’ve got Hepatitis C too” before a mass exodus or stampede.
It seems a lot of guys think HIV is the worst thing you can get, but they don’t realise that’s not necessarily the case. Going through HCV treatment isn’t like popping your HIV medication once a day – it churns your body and your head up. But, in time, you go back to normal and begin living your life again, the help is out there to be had.
If you’re about to face it as I did, look after yourself and seek the help, because without it, I’m not sure I’d have come through it with my brain intact.
Good luck folks.
Andrew Cook (@PositiveAndrew on twitter)