Update since 4th edition
It is now the year 2000 and I am still here. I am amazed at just how much my life has changed over the last four years, not to mention the changes in medical advances, from which I have benefitted greatly.
In 1996 I became steadily more and more ill. I was suffering from constant night sweats, my face was covered in molescums, warts appearing everywhere, my hair falling out in huge clumps, my weight plummeting and the most appalling constant fatigue, it was as much as I could do to get a meal together for Lee on her return from school. This was very frightening for her. Finally I came down with pneumonia and having just recovered from that, I immediately got E. coli septecaemia and very nearly died. While I was in hospital it was suggested that I start on combination therapy — I felt I had nothing to lose and agreed. The viral load test had just come in and my count was nearly one million, and my T cells were hovering around 50. To my mind I had no choice but to begin treatment.
I started with “Dual Combination” (which is not advisable today). I was taking 3TC and D4T. Almost immediately I started to feel better. My viral load became undetectable, my T cells rose to over 200, my hair stopped falling out, the molescums disappeared, as did the warts, the night sweats stopped, but the most remarkable thing for me was to suddenly be flooded with masses of energy. I experienced complete euphoria.
The psychological effects were strange. Having prepared myself for death I found myself strangely afraid of life. I had been forced to opt out of the “rat race”, which in a way was rather comforting. Now I needed to join it again. I realised that I had missed years of planning for a future. No pension plans, no savings etc... I also felt a strong sense of “survivor’s guilt”. I had lost so many close friends and colleagues, and asked myself the question “why me”? Out of the 600 or so women who used Positively Women there were only four of us left from the original group. I decided to start from the beginning again and threw myself into working in the music and film business.
After 18 months I developed a strange side-effect — lipodystrophy. My fat just disappeared off my arms and legs, I had no buttocks to speak of and my face aged about 20 years. My breasts grew enormous and I had a bulging stomach. My viral load was at this point about 5000 and my T cells were dropping again. I decided to see if my body would return to its normal shape and to discontinue any form of treatment. I was still on 3TC and D4T.
After about four months, all my old HIV symptoms were reappearing. My viral load reached 650 000 and my T cells were around 50. The lipodystophy had not changed at all — if anything it was worse — but this could have been “AIDS wasting”. Time for a new combination. At this point (September 1998), dual combination was not recommended and I started on triple combination — DMP, AZT and DDI. It took longer for this to work than the last combination, but after about three months my viral load was below 50 and my T cells ranged between 200 and 250. I am still on this combination and still undetectable and, much to my doctor’s surprise, my body fat has gone back to normal. My triglycerides are still high, but I have the weight back on my buttocks, arms, legs and face — and it seems to get better by the day.
I have recently married a wonderful man, Lee is now 17 and life goes on. I am more confident of a future, but by no means complacent. I see too many of my peers suffering appalling side effects or complete treatment failure for me to take my life for granted. If I am still around for the next edition of the ABC of AIDS, I am sure it will all have changed just as radically again — watch this space.
110