Co-infection with hep C and HIV can restrict
your treatment options but for Matt Edge a rare drug interaction left him
wondering if he would even survive the dual diagnosis, writes Rob
Dawson
Photos: Jay Eff
I
was apprehensive when asked to interview the former Mr Hoist. The Hoist is
a popular London leather bar and my knowledge of that scene is slight, so
I was unsure what to expect. We met in a park on the hottest July day ever
recorded. As I approached, I imagined the man waiting for me in a leather
waist coat. Instead, I was greeted by an energetic guy with a soft Black Country
accent and a friendly smile. Ashamed of my preconceived ideas, I soon discovered
there was more to Matt than Mr Hoist.
As Mr Hoist, did you wish for world peace?
It was bit of fun really. People at the gym suggested I should give it a go.
The £750 prize was quite a motivator and lots of publicity after too.
What brought you to London?
It’s a change from Dudley where I grew up. After uni, I started seeing
a guy in London and soon realised I wanted to live here.
What did you know about HIV back then?
I was safe sex minded and hadn’t had many partners. My relationship
didn’t last after I arrived in London and I started to party more. I
started on the fluffier side of town but soon found my feet in clubs like
Crash, Trade and leather bars. I used the internet, sleeping with more guys,
and I started to slip up.
And that led to your HIV diagnosis?
I knew if I carried on it was only a matter of time so I sought counselling.
I went for regular GUM check-ups. A couple of times I half expected it to
be positive. I took PEP once, which made me really sick. I thought I’d
learned my lesson but the memory faded and I started to drop my guard. One
particular weekend prompted me to get checked out. I had the rapid test and
felt relaxed about it; the nurse even commented. I said it was part of the
routine; goes with the territory. Then they told me it was positive.
How did you feel?
An overwhelming sense of disappointment with myself. I didn’t dwell
on it for too long because, in a way, I felt more in control once I knew.
I tried to stay well and had a lot of friends who were positive who seemed
to be living healthily.
Are we all becoming complacent?
Almost certainly. I was complacent and became HIV positive; I had the biggie
now. I didn’t think it could get worse. I had tested negative for hep
C when I was diagnosed with HIV but knew some of my behaviour was still risky.
When I tested positive six months later I remember thinking: “Now you
really have fucked things up”.
My consultant explained the damage from hep C doesn’t happen overnight,
it takes years. There was no rush to start treatment, but I should consider
it. He said the side effects could be severe. I did some research and started
a combination of interferon and ribavirin a week after my 30th birthday.
How did that go?
My hep C viral load dropped significantly but took longer than most. I have
the hardest type to treat, genotype-1. I continued for another six months
but I was already struggling. I don’t want to dwell on side effects
because I’m glad I tried treatment, but it was difficult. I had sleeplessness
and feelings of utter despair at times. At the lowest points I felt broken.
But I knew it was down to the treatment, as it can cause depression.
Work was supportive but I was trying to carry on life as before and needed
to slow down. I had constant niggling infections like mouth ulcers and sore
eyes that wore me down. I was reluctant to take anti-depressants at first,
but realised I needed to take action. I took them and started to feel more
able to cope. My doctor also gave me medication to boost my white blood cell
count and I began having a bit of a life again. It was still hard though.
I went to see a counsellor; a place to have a good cry. And I talked about
the difficulty maintaining relationships with my friends, family and partner,
because of the depression and the stigma surrounding hep C and HIV. My partner
was very supportive; he’d previously had hep C and cleared it before
we met, so he understood to a degree. It can put a strain on your relationship;
he put up with a lot. Sometimes it’s easier to hit out at those closest
and, frankly, at times, I was a complete bitch.
Thankfully my employer let me work part-time from home. I was busy and contributing
again. I learned to slow down and enjoy just watching a DVD on a Saturday
night. I finished the treatment just short of the requisite nine months. I
wanted to start the New Year afresh and was thankful it was over.
My CD4 was still dropping. It was low during the hep C treatment but was expected
to climb again, which is typical. Then, three months after stopping treatment,
the hep C rebounded at a very low level. I decided with my consultant to go
back on treatment for another three to six months; it must have been my S&M
side showing through because I never thought I would go through that again.
By now my CD4 had dropped to 130, so it was recommended I also start HAART.
I was quite involved in that decision. Although the hep C meds ruled out some
combos, I still had options. I was pleasantly suprised I had the choice of
a once-a-day regime. But shortly after begining treatment I started to feel
ill. I didn’t seek help early enough as it was hard to know what was
causing it. When I couldn’t keep my medications down, I knew something
was wrong and my partner took me to hospital.
What
was going through your mind?
I was so sick I wasn’t really thinking. Initially they put it down to
an abdominal infection. Luckily, I was on a specialist HIV ward and the care
was thorough. I had x-rays, an ultrasound and even an echocardiogram. The
hep C and other drugs meant they had to go easy on certain drugs, even paracetamol.
One morning I woke up and couldn’t get my words out properly. I became
flustered and unsteady on my feet so they ran a series of tests. I didn’t
know what the hell was going on. They told me it was a problem in my brain,
possibly a small stroke or a drug reaction; they weren’t sure.
My speech was going and they kept asking me to say ‘British Constitution’
but I couldn’t get it out. My Dudley accent isn’t that bad so
I knew something was wrong. By the time they’d ruled out the worst,
I’d worked myself into a frenzy. I seriously didn’t think I was
going to walk out of there. After more tests they suspected a rare drug reaction
to the antidepressants I’d started with the second round of hep C treatment.
We cut out all the treatments except HAART and I rebounded quickly. With my
consultant I decided I’d had enough for one year. It was important for
me to get some of my life back and, for me, it was best not to start hep C
treatment again, at least for now.
So what now?
We all have millions of viruses floating around in our bodies, and for now
I’ve got a million and two. I’m learning to live with it for now,
to monitor it, to lead a healthier lifestyle. I used to train with a gay swim
team and went to the Sydney Gay Games a few years back. I’d like to
get back into that.
And how do you feel ?
For now I’m just enjoying feeling good again. My HIV viral load has
dropped significantly and my CD4 is climbing. I’m almost back at work
full-time and I’m taking positive steps like seeing a life coach. I
stay in touch with my consultant about new treatments and may even consider
interferon again, especially if there was another treatment to combine it
with.
How does living with hep C contribute to the stigma already part of
an HIV diagnosis?
I’m more likely to stumble over the words hep C in a conversation than
HIV. There’s a big community of people with HIV and some stigma has
evaporated. Hep C is different. People say they’ve been vaccinated for
hep C. There is no vaccine; just a lack of knowledge.
What about support?
My parents knew I had hep C but I didn’t tell them about the HIV until
recently. They were pretty shocked but I did my best to educate them. I even
took my mum to see my consultant. She saw the clinic, the staff and was able
to ask questions. It was good for her to see the range of people living with
HIV. My friends are all still very supportive. I’m fortunate in that
respect.
What advice would you give to someone with hep C or to anyone at risk?
Be active in decisions about your treatment. Treatment is a worth a go because
it might work, but it can be hard work. Choose a time when you’ve the
best chance of seeing it through. If you have to live with hep C, it’s
not a death sentence. Stay informed and look after your liver If you’re
at risk or are unsure get better informed and find out how to minimise those
risks. And get tested; the earlier you know the more you can do to stay in
control of your health.
