Interview 28

Age at interview: 39

Age at diagnosis: 20

Brief Outline:

He currently has an undetectable viral load and about 900 CD4 cells. He did not respond well to earlier regimes, but is now doing well on 'salvage therapy,' although his medication has numerous side-effects.

Background:

A 39 year old gay male health professional who works part time. He was diagnosed in 1986 after unprotected sex with a HIV positive partner.

More about me...

Age at interview' 39

Age at diagnosis' 20

Sex' Male

Background' A 39 year old gay male health professional who works part time and has an active life. Diagnosed in 1986 after unprotected sex with a HIV positive partner.

Outline' A 39 year old gay male health professional who works part time and has an active life. He was diagnosed in 1986 after unprotected sex with a HIV positive partner. He currently has an undetectable viral load and about 900 CD4 cells. He did not respond well to earlier regimes, but is now doing well on 'salvage therapy'' 3TC, abacavir, tenofovir, efavirenz and Kaletra. He believes that having Interleukin therapy first may have helped his current regime to be more effective. Despite doing well, he has experienced numerous problems including 'male menopause' (with lowered testosterone and osteoporosis, tiredness, lowered libido), compression on the spinal cord, peripheral neuropathy, increased cholesterol and renal insufficiency. He also has contracted hepatitis C through unprotected sex. He believes people should take care to avoid HIV transmission since treatments are not uncomplicated.

He worries about being dead rather than about dying.

And I do, I do worry about dying. Actually I don't worry about dying. I worry about being dead.

There's a distinct difference. I suppose being a palliative care specialist, and having watched people die, and having managed the dying process, I know that the process of dying isn't that scary. But it's the unknown thing afterwards. What, what is beyond death?

What do you believe?

I don't know. I honestly don't know [pause] [laughs]. What do I believe? [pause] On the very scienti- scientific sort of level, and this is perhaps clutching at straws, but every thought I take is an electrical impulse. Electrical impulses are energy. Energy cannot be created or destroyed. It just changes form. So fingers crossed, I will just change form.

He has few anti- HIV drug options left and so is careful about taking medication.

And at the moment my viral load fluctuating between zero and 50. Zero, incidentally, means below the level of detection of the test. It doesn't mean zero. If it was zero, it wouldn't be able to fluctuate up to 50. Which means my virus is still reproducing on 6 different products' sorry, 5 different products, 6 different drugs. At some point it will start to get a bit more enthusiastic as it becomes resistant. So at some point I'm going to have to change my drugs. And I've been through so many that even though new drugs are coming on stream all the time, I still don't have that many drug options. So I have to be a little bit careful about that.

He has 'male menopause' and chronic fatigue which may have something to do with long-term anti...

Sort of I'm nearly 40. And I, I basically know that I, I am menopausal. Because I'm not producing testosterone. Even though I've got testosterone and I've got a bit of sex drive. And then to be told I've got osteoporosis. It makes me feel like a little old lady.

[laughs] And I must admit I was incredib-… That's one of the few times that I've been adamant that I haven't got something. 'No, I can't have that.' Because I do weight bearing exercise. And I take testosterone. And I have a calcium rich diet. And, and of course it came, [laughs] came back as being positive. But yes, really it's just lack of sex drive, tiredness. But it's hard to know… I mean I, I suffer from chronic fatigue anyway. And when you get honest doctors… At the stage that I'm at anyway, because, as I said, I've been positive for near, nearly 20 years. Next year it'll be 20 years.

April next year I will have been positive for the same duration that I've, I've been negative before. So 20 years negative, 20 years positive.

And honest doctors will say to me, 'Well, you may have the, the chronic fatigue because of the time that you've been positive. Or because of the different drugs that you've taken. And, and the, the fairly heavy drug load that you take.'

Even though he lacks the energy to work full time he has found many interesting things he can...

I do get very frustrated that I don't always have the energy to do what I want to do. I haven't been able to work full-time for a few years. Which, again, I find that frustrating. But' I've thought, well, OK, if I can't work full-time I'll do stuff that interests me. So I do independent work as a clinical nurse specialist. I've worked in a' recently in a psychosexual clinic, which was very interesting. I was having hypnotherapy at one point. And I thought, ooh, this could be useful. And at the same point in time my hypnotherapist said to me, 'I think you'd make a good hypnotherapist. Would you like a scholarship? I think I can arrange it.' So I now do hypnotherapy. I'm a qualified hypnotherapist. So the spare time that I've got through not working, I've actually put to fairly good use. I decided' I, I helped to set up a hydrotherapy unit. And I was working in a hydrotherapy unit. And that has now closed, unfortunately. But I decided to formalise the massage experience I got. So I did a massage diploma. So I'm now a qualified masseur as well.

The positive support he got from his HIV clinic made it easier for him to deal with less informed...

But from the support side, Dr [name] at [hospital] was, was, at the time, one of the experts. And the, the team around him were so, so supportive. Very, very positive' And I, I think that was very important. 

Why was that important?

I think if you initially have a very positive, very supportive team to support you, when you're first diagnosed, then that sort of rubs off. So even if you get the odd negative thing in the future from, from healthcare staff, you're able to deal with it. Because you've had so much positive reinforcement at the beginning. And, ok, one, one time we had hassle with the dentist. Where [name of partner] had gone to the dentist and  [pause] one of the workers at the dentist had said, 'Well, you can have this done if you feel it's worth having done.' And I think, well, what's that supposed to mean? If' You're saying, 'If, if you think you're going to live long enough to benefit from the dental work.' And another time we turned up at, up at the dentist. And everything was covered in plastic bags, including the staff. And, and the support worker at the dentist's said, 'Oh well, [name of partner] is one of our special patients.' [laughs] To which I replied, 'Well I'm one of the special patients. But they never, never covered the whole surgery in plastic bags at the transitional training unit.'

It may be worth appealing if you are turned down for benefits because appeals can succeed.

I've done benefits advice with people. And appeals and stuff. And I mean it is harder now for people to get state benefits. But the benefits are still there if people need them. However you do get some agencies who are a little bit negative. Or, 'Well, it's not worth trying, you won't get it.' I did apply for disabled living allowance. And I was turned down. And that was when I was working. And I thought, well, I don't need it, really. I was entitled to it. Because, because of the mobility problems. And' [sighs] And then I applied for it again, and got turned down again. And I thought, well, I don't need it. And I'm too busy to really worry about appealing. And then I applied for it a third time. And this was when I'd had to give up full-time work. And my mobility problems were' certainly warranted getting it.

And they turned me down. So I thought, right, I'll appeal. And all I did was I wrote them a stroppy letter. Basically saying, 'How dare you turn me down?'

And that was the additional information they got. They looked at it again. Which means somebody else looked at my application again. And gave me the benefits. Not because anything had changed. 

Just because somebody else had looked at the paperwork. And that's the problem.

While not being well enough to work full-time he has done a range of courses and interesting jobs.

I do get very frustrated that I don't always have the energy to do what I want to do. I haven't been able to work full-time for a few years. Which, again, I find that frustrating. But' I've thought, well, OK, if I can't work full-time I'll do stuff that interests me. So I do independent work as a clinical nurse specialist. I've worked in a' recently in a psychosexual clinic, which was very interesting. I was having hypnotherapy at one point. And I thought, ooh, this could be useful. And at the same point in time my hypnotherapist said to me, 'I think you'd make a good hypnotherapist. Would you like a scholarship? I think I can arrange it.' So I now do hypnotherapy. I'm a qualified hypnotherapist. So the spare time that I've got through not working, I've actually put to fairly good use. I decided' I, I helped to set up a hydrotherapy unit. And I was working in a hydrotherapy unit. And that has now closed, unfortunately. But I decided to formalise the massage experience I got. So I did a massage diploma. So I'm now a qualified masseur as well.

Was able to identify the time he seroconverted because he and his partner tested together and his...

But we both decided that we would go for a test together. So off we trundled. And this, this was in [name of small city]. Off we trundled to the [name] Hospital to have our tests. And his came back positive, and mine came back negative, again. And funnily enough each of those negative tests' After my friend had told me that he was positive, each of the negative tests, actually I, I didn't really believe it could possibly be negative. Because of the things that we'd been up to. And it was just infuriating. I just thought, well, there's no way that that can be negative. It must be a case of waiting for seroconversion. That's in retrospect. But I thought I, I obviously haven't yet produced antibodies. I didn't at that time fully understand what seroconversion was. So anyway, we'd gone for our test together. This was [name of partner] in [name of small city]. And his came back positive. Mine was still negative. So they immediately called me back in to redraw the blood and retest. And it came back as a new positive. So I, I know roughly within a couple of weeks when I seroconverted. And that was April 1986.

Believes that anal sex without condoms between HIV positive men can have serious health...

I practise safer sex. Very occasionally I will get shagged without a condom. And that is how I contracted hepatitis C.

Very' I' Very occasionally I would get shagged without a condom. With other people who were positive, who were roughly the same stage of disease progression as I am at, and have roughly the same drug experience. Because you can't say it doesn't matter, if you're having sex with another positive person. It potentially does matter. And it potentially does matter a great deal. It is apparently possible, and there are now documented cases, of people being reinfected with the virus. So potentially you could be reinfected with another HIV virus which is resistant to drugs, before you've had any drugs. And you may well be unfortunate enough to pick up a resistant virus anyway, nowadays. I think a good percentage of the new infections are with virus which is already resistant to, to one or more drugs. So you could pick up another virus which is resistant to drugs. You could pick up something else that you can't get rid of, potentially, like hepatitis C. And I've tried. The drug therapy doesn't work with everyone.

You can pick up other sexually transmitted diseases. Which, a, can be more difficult to treat if you're positive, and b, can increase the risk of you passing on your HIV to someone else, potentially, via oral sex. Or, or something like' So there are reasons not to have unsafe, unsafe sex with other positive people. So don't go into it from the attitude of it doesn't matter. Because it does. But I still choose to.

He does not know anymore what it means to feel physically or mentally normal.

I mean one, one of the things that I was talking about with' to somebody recently, and this is very pertinent. You get to a stage' Certainly I've got to the' this stage. And my friend has got to this stage. And my friend is a, a consultant psychiatrist. Where you don't know what is normal. You don't know how you should be feeling. I, I have no idea what I should feel like at 40 years old, without hepatitis, without HIV. I have no idea. I've forgotten what normal nerve function feels like' I, I will know if it gets worse, or if it, if it changes. But I don't know what it feels to, to feel normal' Either physically or psychologically.

Explains some potential problems with HIV treatments that make it well worth HIV negative people...

But after you've failed one' a few drug therapies' And if you don't achieve undetectable viral load, ultimately sooner or later that therapy is likely to fail. Then the drug regimes do become more complex. And one of, one of the medications that I take is 4 large capsules twice a day. And I know people who are on heavier drug combinations. I currently take, I think I said, 22 tablets a day. Of which the majority are antivirals. And I think' one is for cholesterol, one is for lipids' And I think there might be a multivitamin in there as well. So, so basically 19 tablets a day which are antiviral drugs.