DOUBLE
TROUBLE
After his HIV diagnosis, Philip
Cooper just about kept it together, but when he learned he was co-infected
with hepatitis C, he simply fell apart.
About five years ago I got an unexpected HIV diagnosis.
I remember walking out of the clinic into brilliant autumn sunshine and having
this strange sense of hyper-reality. It was as if I could see in detail every
leaf on the trees, now flaming red and orange as they prepared for winter.
I was exposed after a condom broke during sex with a guy who told me he was
positive. The next day I went on post-exposure treatment to minimise risk
of infection. But the monthąs course of combination therapy the doctor gave
me to try to further reduce the risk didnąt work. Three months later I re-tested
and it came back positive.
Shattered . . . and shunned
Six months after my HIV diagnosis, I moved to my current clinic at Ealing
Hospital where among the usual battery of tests they screened for hepatitis
C. When I met my new doctor, he told me the test had come back positive. At
this moment I fell apart. I sobbed uncontrollably in my consultant's room
that day, absolutely shattered. I wondered how long I had left? Ten years?
Five? Less? I didn't know much about HCV but had heard it was worse than HIV
and that having both was deadly. It was a dark time generally. My career had
ground to a halt, I had no money, was living on a friend's floor and had separated
from my last partner several months before. My new doctor, Dr Ash, and the
nursing team at Ealing couldnąt have been better though. They reassured me
that I didn't have to start putting my affairs in order just yet. Co-infection
had a profound emotional impact. A well-established network of HIV positive
people in London had helped me with my HIV diagnosis and many friends and
sexual and romantic partners had HIV themselves. When I learned I was HCV
positive, all this changed. If I disclosed my HCV status to HIV positive friends
and lovers their reactions varied enormously. Some were supportive, some anxious
or afraid, wanting to find out more, but some just didn't want to know and
I soon lost touch with them. The very community I saw as my adopted 'family'
now appeared not to want me after all. But luckily, I had a few good friends
to see me through the worst. I didn't talk to my family though; despite having
a good, loving relationship with them I didn't feel able to share this news.
"My HCV diagnosis complicated things. Treatment options became bewildering. The debate around safe sexual practices was particularly confusing"
Confused, and that's just the professionals
The HCV diagnosis complicated things. Treatment options became bewildering.
It became clear: healthcare professionals had wildly different approaches
to treating co-infection. Quality research seemed thin on the ground and sometimes
contradicted what was previously thought. The debate around safe sexual practices
was particularly confusing. Iąd never injected drugs so how did I get infected?
Although I have tattoos (an exposure risk), my hunch is I got HCV through
sex, although I'll never know for sure. Some data was published that suggested
even
kissing might not always be entirely safe. If professionals are confused,
imagine what it's like for patients. A while ago, when I changed clinics briefly
to be nearer to work, my new HIV specialist told me I didn't need treatment
for HCV immediately, while the liver specialist said I did. I walked out,
preferring to travel the greater distance to a different clinic rather than
be forced to pick my way through two doctors' opinions.
Bye-bye to barebacking
After my HIV diagnosis, I started to have sex without condoms with other HIV
positive men. The gay bareback scene was active in London and some (including
myself) felt this was one of the few 'perks' of having HIV: being able to
enjoy sex without condoms again with other HIV positive men (despite doctors'
warnings that it was unwise for HIV positive people). Until recently, many
doctors said HCV was not sexually transmitted. Somehow, though, at least in
the HIV positive gay community, it began to look as if sexually-transmitted
HCV was becoming more common. As the pattern of new infections grew, 'safe'
sex became an increasingly problematic issue for me and my then partner (who
had HIV but not HCV), so we decided to go back to using condoms. But it wasn't
easy to use them again. I got some therapy to help and was lucky to find a
superb therapist. The work we did together was priceless and I'll feel the
benefits of it for the rest of my life.
Treatment kicked in like a ton of bricks
The treatment path I chose was first to stabilise my HIV as my CD4 had fallen
to 140 and I was losing weight and feeling run down. I started combination
therapy with Trizivir and my viral load soon went undetectable and my CD4
stabilised at around 300. My health and energy improved.
"After my HCV diagnosis, the very HIV community
I saw as my adopted 'family' now appeared to not want me after all."
About a year later my consultant urged me to try pegylated interferon and
ribovirin treatment, as he felt I could be heading for complications within
a couple of years. I was noticing symptoms by this stage: headaches, bad digestion,
feeling sick and tired. My legs felt very stiff and achy. So, two years ago,
I started pegylated interferon and ribovirin. After three days something hit
me like a ton of bricks and from that day I just felt horrendous, looked terrible
and spent my days hobbling from the sofa to my bed, to the sofa, staying at
a friend's house unable to look after myself. I packed the treatment in after
three weeks feeling like I couldnąt cope with it. I couldn't work at all.
We are not prepared for what the treatment can be like. Most people who have
tried interferon say they are told by their doctor they might feel 'a bit
fluey'. Being unprepared means you may not have organised people to help you
at home, or organised your work for a possible extended absence. I go to a
lot of presentations by doctors about HCV and if I didnąt know better, Iąd
come away thinking hepatitis C was quite easily treated and cured. This doesnąt
bear any resemblance to most patients' experiences.
Traditional Chinese Medicine to the rescue
With my HIV infection stabilised, problems associated with HCV became my main
health concern. I started researching complementary therapies. I came across
John Tindall's work with TCM (Traditional Chinese Medicine). I had a consultation
with him and started monthly body acupuncture, daily Chinese herbs and attended
Qi Gong classes, an energy movement exercise, a bit like T'ai Chi. Apart from
my symptoms starting to improve, it just felt 'right' for me. That was about
18 months ago. Since then my LFTs have remained normal and my last HCV viral
load test was around 30,000 which is quite low. Importantly, I have had more
energy, fewer headaches and the aches and stiffness in my limbs have improved.
I even gave up smoking, not bad for somebody who smoked for 20 years without
a break. My treatment with John costs me about Ł60 per month. It's well worth
it. I really don't want to have to go back onto interferon and ribovirin again,
although I will consider it when appropriate. I will be better prepared and
I will use TCM to help relieve side effects. Interferon-based treatment is
improving. Even since I tried it two years ago, new options have become available
and completion and success rates have improved. I've experienced no conflict
in combining conventional and complementary medicine, in fact my doctors and
TCM practitioner all respect each other's work.
Good advice and inner strength
After living with HIV and HCV for several years, this is my advice if you've
recently been diagnosed. Get the best co-infection doctor you can find, and
don't put up with any service that doesnąt meet your needs. Talk to as many
people as possible in the same boat and decide how you want to play it. You'll
probably get a lot of conflicting information and advice, so have the strength
to follow your own path and not be blown off course by others. If you're thinking
of treatment, talk to other patients first and get their perspective. Consider
TCM and other complementary therapies as many find these helpful. Organise
support for yourself and don't try to be stoic or a superman/woman. Despite
living with HIV for five years and the devastation I felt after learning of
my co-infection, life has actually improved. Somehow, when life was reduced
to the bare bones, something inside me woke up and got to work. I've learnt
a lot about what life means to me. Last year I told my family about the HIV
and HCV and they were wonderfully supportive. Five years ago I was homeless,
penniless, unemployed. Now I've a flat, a new career, money in my pocket and
feel more content than ever. Funny what co-infection can do for you, huh?
This isn't the end, it's a beginning, Good Luck.
