Interview 03- HIV

Age at interview: 37

Age at diagnosis: 34

Brief Outline:

Has slowly built up his strength since his illness, becoming highly expert in HIV. He did extensive self-development work on himself. He has 870 CD4 cells and currently takes nevirapine, abacavir, and lamivudine with minimal side effects.

Background:

Has only recently returned to full time work. He was diagnosed with HIV as a university student, and in 1997 he very nearly died from HIV-related illnesses.

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Contrasts the collaborative approach of his HIV consultant with the ‘I prescribe/you take'...

And then my oncologist came in. Now the oncologists at that time, unlike HIV doctors, were still on rotation. And so I'd had this particular one for six months and he was very much an old school doctor where I prescribe - you take. He didn't really work very well with me on the level that I had been used to. And he said well you know the one that you have had hasn't worked and we are going to switch you now to this one other option. I cannot think what it was called, but it was something that had been used in the States. I think it had been used for ovarian cancer, it is highly aggressive and he said you know, he said we think that it may work for KS (Karposi’s sarcomas), there have been some trials in the States and it does seem to be working for KS. Now it is much more aggressive than the other ones you have, he said. So you know it will have quite a negative impact on your white blood cells, and you will lose your hair, and this, and he went through this list of side-effects… these are the possible things that could happen. And he's standing there telling me this at my bedside and my clinic doctor is there standing next to him making notes. 

 

And he finishes up and [name of HIV consultant] my doctor turns to him and says what, and you really think he is going to take that? And ugh [name] the oncologist says 'Well. Yes' He looks at me and I look back and look at him and I just laugh and [name of HIV consultant] laughs back, and I said, 'No I won't take that.' He said that you have to because it's your only choice. I said, 'No, no, no it's not the only choice.' What I will take is the medication you were giving me before. But I will take it again at three weekly intervals, not four weekly. He said that doesn't make any difference, he said, me moving it a week wouldn't have made a difference. I said you moving it a week made the difference, I tell you. I know my body. I know how I felt after every three weeks when I had the chemotherapy, the soothing effect of that I felt.