Peter, along with Joan, appeared on BBC Radio for Saving Lives you can listen to her story above.
I’m a maths teacher, and I’ve only recently ‘come out’ as HIV positive, having been undergoing treatment for some time. I’m doing so because I’ve been through so much that might well have been unnecessary if awareness about HIV was better. I hope that, by speaking about my experiences, I can contribute to creating a new environment in which stories like mine won’t be as common.
I was probably infected with HIV in 2003. At the time, I was in a stable, monogamous relationship – in which both of us were unaware that the other was infected. My partner was unwell a lot – she had several persistent coughs and colds, as well as itchiness and a few other symptoms we couldn’t explain. Our GP couldn’t explain them, either – in fact, we saw ten different GPs in total, and none of them could tell us why my partner was so ill so often.
We went to City Hospital. My partner underwent various investigations, she had X-rays. She was then referred to Sandwell Hospital for bone marrow investigations – again, there was no final diagnosis. Throughout all this I’d been doing some research and, finally, I put my foot down: we both wanted my partner to be tested for HIV. I’d been frustrated that until this point no doctor had suggested this, much less actually referred us for a test. When I demanded it, we were referred to Heartlands Hospital, where an HIV test returned a positive result.
We’d waited so long for that test, though, that she was already very ill. An HIV patient should be on treatment when their CD4 count – a measurement doctors use to monitor the progress of HIV – dips below 300. My partner’s CD4 count was 28. 50 is considered seriously dangerous. She could so easily have died because of all those missed opportunities for testing.
Because my partner was positive, of course, I also underwent a test – and found out that I, too, had HIV. I had a much healthier CD4 count of 450, but my doctors spotted an abnormality in my liver function, and diagnosed me with what’s known as hepatocellular carcinoma, or cancer of the liver. I also had liver cirrhosis caused by hepatitis B. Both of these conditions were the result of my body’s defences being broken down by the HIV virus. Again, though I was in a better position than my partner, the late diagnosis had really impacted upon my health.
I was referred for transplant and nearly died of acute renal failure. But I got better: the HIV medication gave me a new lease of life, and I met a new partner, who was HIV negative. Our life together was going really well, and we were considering having a family – HIV treatments today are such that even natural conception is possible. But then I became acutely unwell again. I developed a rare complication from my liver transplant: half the blood flow to my liver simply stopped, and that half of my liver essentially died. I’m now awaiting a liver transplant. There are no guarantees.
Nevertheless, I’m coping. Most importantly, I don’t want other people to come so close to death as I have simply because of the widespread reluctance to test – amongst both the public and, amazingly, doctors. There’s a stigma around HIV that needs to be countered. That’s why I’m speaking out.