‘If I forget these drugs, I forget my life’

In 1997 Matthew Damane went for an HIV test and discovered he was HIV positive. He was given no counselling about how the virus progresses through the body, nor how he should take care of himself. Five years later, Matthew is in a very different situation. Through a unique programme in Khayelitsha, sponsored by the international non-government organisation, Medecins Sans Frontieres with the blessing of the Western Cape provincial government, Matthew Damane has access to free antiretroviral therapy. He is acutely aware of the complexities of taking these life saving drugs. This is his story as told to Sue Valentine.

In 1997 I discovered I was HIV positive. I got TB and could not get rid of it and then some of my friends said maybe I had AIDS and I should have a test.

When I went for the test they gave me no counselling. I could say I was treated like an animal, they gave me no information. But now I’€™ve forgiven them, I’€™m grateful that I learned my status. It’€™s much better to know your HIV status so that you can take care of yourself.

As from 1997 I was hiding my status, I felt there was no way forward , no guidelines. In 1998 I had TB again. I survived 1999 and then in 2000 I was sick again. I’€™d heard rumours there was this clinic from overseas that was here to help South African people ‘€“ that was MSF, Medecins Sans Frontieres. I was one of their first clients in Khayelitsha and they helped me to understand this HIV.

What also really helped me was my sister. I stay with her and we are very close. She was the first person I told that I was HIV positive and she accepted me. After I had gone to MSF as a patient, my sister went to them for counselling so that she could learn more and understand my HIV status. MSF told her “if you cry, then you’€™ll put more stress on Matthew”, so there was no alternative, she accepted me. It was her support that encouraged me to be open about my HIV status and to start speaking out.

Then this year, although I was looking healthy, my CD 4 just kept on going down and down. It went from 160 to 138. My doctor advised me that I could join the new antiretroviral programme that MSF was starting because the selection panel would consider anyone who had a CD4 count of under 200 for the programme.

At first I was a little bit scared. I’€™d heard about the side effects that go with antiretroviral (ARV) drugs and I wasn’€™t sure. My doctor said I should decide, but there was no pressure to force me to take the drugs. I took a while to decide, but what helped me was I saw another woman who was on the antiretroviral therapy and although she had a skin rash for a while, she was fine and looked beautiful and then I told my doctor I was ready to take the drugs.

I started to take the antiretrovirals in June 2001. I was on a triple therapy regimen ‘€“ one tablet of Nevirapine and one that is a combination of AZT and 3TC. I would take two tablets in the morning and two at night.

The MSF doctors had warned us of side effects, and I had a few that I dealt with, but they weren’€™t bad. It started off with spells of dizziness, a headache, nausea, diarrhea and then a skin rash. But none of the side effects lasted long. Some people in our support group didn’€™t even react to the ARV therapy. They had no side effects. This is because our bodies are not all the same. Some people react and some don’€™t.

I’€™ve never had a problem remembering to take my drugs. Some of the others in our group were forgetting, but for me it’€™s been easy. The drugs are my life, if I forget to take the drugs I am forgetting about my life.

What was very important is that we were monitored by our doctors for any of the side effects that are typical with ARV therapy. So to me, the whole treatment went quite well from June until August.

But then in September, things didn’€™t go so well. I started to get tired. I felt weak and had no appetite. I went to my doctor and he decided to change my medication. He also took some blood to run some tests, the results showed that my haemoglobin was too low.

I stopped taking the ARVs for two weeks while my doctor gave me medicines to boost the haemoglobin. Other friends of mine advised to eat spinach, beetroot, red meat and liver to boost the haemoglobin as well. Once my haemoglobin levels returned to normal, I went back onto my antiretroviral regimen.

The good news at this time was that I also had a viral load test to determine the amount of HIV that is still in my blood. The result was great. My viral load is undetectable. This means the ARVs have killed off so much of the HIV that it can’€™t be detected in my blood.

I appreciate MSF very much. Often I’€™ve told myself, if it weren’€™t for them I’€™d probably be dead. Now I’€™m living normally, I still have girlfriends, but I use condoms. It’€™s very important to look after your life and do things right. You should be proud of yourself, no matter if you’€™re HIV positive.

One day I want to marry and have my own house. I think it would be easier to marry someone who is also HIV positive so you don’€™t have to deal with people’€™s fears. I want to continue to help people in the community who are HIV positive. I’€™d like to start going to gym, but it’€™s too expensive, but I need to keep myself fit.

To me it’€™s very important to live openly about my status. That way you don’€™t have to be secretive and create stress for yourself. I’€™d encourage other people to be open too, and to take things easy.

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  • healthe

    Health-e News is South Africa's dedicated health news service and home to OurHealth citizen journalism. Follow us on Twitter @HealtheNews

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