Starting Antiretroviral treatment - Part 1

‘Will I be ready to start taking ARVs when the time comes?’ This is a three-part story my road to Antiretrovirals, first published in 2010

I have always known that one day my health would deteriorate and I’d have to start taking antiretrovirals (ARVs) to manage my HIV. In-fact the thought of me taking ARVs started several months before my 10th anniversary of living with HIV. It was when I began to wonder if I would ever get sick - not that I wanted to get sick. I was worried that the day this virus started winning the war, it would bring everything it had.

Following those thoughts, I started to talk to my personal doctor about ARVs. At the time my CD4 was still over 500, so I didn’t really have anything to ‘worry’ about. The other day I went to get my quarterly blood results (which I use to monitor my health). Before my doctor opened them he looked at me and asked, “What happens if you need to start taking ARVs?”

It was like he knew what I had been thinking. My answer to him was, “I don’t know. I will have to think about it first.” Then he said, “You know you will have to make a decision one day. But it is your choice.”

He then continued, “Pholo, the problem with you is that you have grown up with HIV during the years of denialism. Side effects were still very strong. Now things have changed. The side effects are very low and can be managed.” I remember nodding to what he was saying, but my mind was somewhere else. All I was thinking was, ‘Me on ARVs? Eish.’

Before I had to go for my next tests, my health started to deteriorate. I was developing oral thrush a lot more often than I had previously in my life, and I was getting more tired every day. My body was not coping with my daily activities and most people who know me could tell that something was wrong with me. One day I was feeling so bad that I decided to consult a general practitioner in my area. He suggested that it could be that my CD4 had dropped and advised me to do a CD4 count. I refused. Instead I asked him to prescribe some medication.

The following month, when I went do my blood tests as scheduled, I was still not feeling well. The oral thrush was still there and my feet felt like I was walking on needles - especially in the evenings and early in the morning. It was not a surprise that when my results came back my CD4 count was 400 and my viral load was over four hundred thousand from forty thousand copies. It was the biggest change in my health in ten years.

‘Shit…’ I thought to myself.

My doctor asked me again if I had thought about the possibility of taking ARVs. I was not ready to have the conversation, and instead, I asked if he could give me some medication to ‘fix’ the problem. He gave me high a dose of Vitamin B for my feet, Fluconazole for oral thrush and a mouth rinse. I took them hoping that they would reverse the progression, but that was not the case. I still felt weak, though the oral thrush got better.

Seeing that things were not improving, my doctor advised me to do a follow up test in two months or so. Within that time I did everything by the book when it came to ‘healthy living,’ hoping it would make a difference. But two months later my health had not improved.

I went back to do follow up tests. I was expecting bad news, and I was right. My CD4 count was now at 300. At that moment I realised that my decision about ARVs had to happen soon. I did everything by the book but it still went down. I knew that immune boosters and antibiotics were not meant to stop HIV progression - ARVs do that. But instead I hung onto ‘hope’ that there might be a miracle.

As I was digesting this, my doctor started with the ARV talk again, only this time he was not asking me to think about it. He was explaining to me the importance of taking them at this stage. He told me that at that level, if I took ARVs, I would reduce the risk of experiencing kidney failure, heart disease and other illnesses. The side effects were likely to be minimal because my body was still strong.

My response to him was different this time. I told him I had been thinking about it and I knew that I had to take them, but inside I knew I was not ready. I asked him if I could start the next year (2010) as I needed more time to prepare myself.

I left his room, got into my car and drove for two minutes. Tears started rolling from my eyes, and I stopped and cried until my body felt cold. For the first time, I wished there was a cure for HIV. I wished I was not infected with HIV. I cursed the person I got it from.

But the reality is that my time of living with HIV without treatment was up. I had to accept that this virus had progressed and my fighting strategy must also change. I needed to prepare myself for the challenge. I was not afraid of taking ARVs. I just didn’t know if I had the discipline to take them every day for the rest of my life.

I was about to cross a bridge of life. I had to cross to the other side or I would have had to face the consequences of not crossing in time.

#lifebeyond #diaryofpr #pholoramothwala #HIV #positiveliving