(Long Post Alert)
It was supposed to be a normal day in the life of HIV positive Joie. Hospital day, I would leave home by 5.30, wait 3 hours to see a disillusioned, disinterested doctor who would ask me routine questions and give me the date for my next visit, usually 3 months after this one.
If there was any inkling that my day would be somewhat different from the regular hospital visits i was used to, it would have been in the fact that my taxi guy came late even though I called him a little over 20 minutes before. I was enraged because I hate to be late to the hospital. The number of people that are there by 5am is unbelievable and I just want to go in and leave as quickly as possible, to make the process as painless as I can.
Anyway, I arrived there a few tens of minutes shy of 7 am and proceeded to wait as we usually do. I noticed though that I was uncontrollably sleepy, something that never happens to me. I was a bit bothered about it wondering if it was due to my inactivity in the past few weeks.( I sustained an ankle injury while running and continued working out with it until it became unbearable so for the past few weeks I have had to avoid putting any pressure on that leg.) One of the goals I had set for myself mentally was to be at least 4kg lighter than my last weigh-in at the hospital. I had fallen really ill the month before my last visit and I lost a lot of weight so I wanted to maintain and even improve on that. But I had not really put my mind to it as I was eating practically indiscriminately, so I was also scared that added weight might be causing my general lethargy.
They started off really late at the clinic; around 9 am. Maybe there was another doctors’ strike, maybe because there was a power cut – and we all know they do not work if there is no power, even if it is clear as day- or maybe because they felt like. I don’t know, only Jesus can tell. We were ushered in to be weighed by a polite, young gentleman. He referred to the patients as ‘Mummy’, ‘Daddy’, ‘Aunty’ and ‘Uncle’ out of respect. I caught myself wondering when he would be taught the ropes and become rude to everyone. I was quite surprised when I stepped on the scale, to discover I had lost another 3kg. I did not doubt the scales because my previously snug, now slightly loose, clothes had given an indication, but I was taken aback since, based on my diet and exercise the few weeks before, I had little reason to lose weight.
The kind, elderly matron, who seems to have taken a liking to me, took my case note out of the pile and dropped it on the table of a doctor . This doctor is probably the nicest and most thorough in the clinic but that is not saying much considering the competition is minimal. My being attended to by her proved to be a curse and a blessing on the long run. As I waited. I observed quite a few people in very chronic stages of the infection being helped around, ostensibly by relatives. These people, were in the stage referred to as ‘wasting’, they had experienced extreme weight loss, they looked pale and gaunt, and seemed too weak to move without aid, or even to speak loudly. I wondered which of them had become like this because they had to wait for drugs or because they were in denial. There was a particular gentleman who was very tall and light-skinned. In his days of health, he probably would have been seen as attractive to women who liked fair complexioned men. He had a tattoo on his arm. I began to wonder if he had been a ‘playboy’ if he caught it through promiscuity. Can you imagine? I, who am in the same shoes was attempting to judge him?!!
I had to wait quite a while to see the doctor as there were several people ahead of me, and I wondered if the Matron had actually done me a favour, especially because I saw the other people I had been in the queue with, being attended to quickly. Finally it was my turn, however. The doctor opened my case note and began to tick off the routine things they always do, then reminded me that on my next visit would be for the routine blood testing. The reminder was because these tests now have to be paid for by the patients. I then asked her what the results of my last test were. She checked her computer, then smiled in a weird way and said the last words I ever wanted to hear ‘ you are now eligible for drugs’. Apparently my CD4 count had dropped considerably so I was now at risk of wasting eventually. Ironic isn’t it. I was now a bonafide PLWHA. I felt like I had been given a death sentence. All I was thinking was ‘hell no!. Not today’. The doctor then asked ‘ are you ready?’. I wondered what for. What was the procedure? Would I be required to pay? I needed some sort of guidance into the next step and this was where it got… interesting.
I asked the doctor how I was supposed to be ready. Mentally? She said yes. If I was ready she would send me to the counselor, and when I was done there I would come back to her, and she would write me a prescription for drugs which I would go and queue for, then I would go home and come back to see her in 2 weeks. I told her it was the ‘long story’ that would put me off but I really needed her to explain why I needed to be ready. What exactly about prescriptions required that I prepare my mind, what prescriptions she would write for me, etc. But I felt under pressure to make a decision, like I was wasting her time. So I told her I was not. Not ready, not today. She said it was fine and then asked me if I wanted my appointment at the regular time (3 months interval). I asked her what she advised. Again, she said it was up to me. I was perplexed. There I was deeply troubled and confused and this doctor was just treating it like it was not her concern. I asked that I see the counselor regardless. I needed to understand a few things and even though I had a little more than an inkling of what the drug regimen would involve, I wanted someone to assuage my fears and provide clarity. The doctor filled out a counseling form for me to take along to the session.
To appreciate my anxiety, one must understand the treatment process for HIV/ AIDS. The drugs given to PLWHA are called Anti- Retro Virals (ARVs). These drugs are EXTREMELY TOXIC and so have to be prescribed in a specific manner and taken RELIGIOUSLY at the same time everyday for the rest of your life. If one deviates from the routine of taking it it can render the drug ineffective, cause the virus to multiply and require that the person be put on a second regimen. There used to be 3 different regimen ( or lines ) of treatment, which were administered to the patient, in succession, if the previous one failed. (It is a regimen because ARVs are never one drug only, they are a combination of a few drugs.) If the 3rd line fails then there is literally no hope for the patient. The expected outcome of the treatment whether 1st, 2nd or 3rd line treatment is that the patient’s viral load reduces drastically and the CD4 count increases. CD4 does not increase in impressive amounts so it is really the viral load that one needs to be concerned with. However, since 2009, the LUTH centre has not conducted any viral load tests for me and many of us. I was told in 2013 that, when the clinic got burnt in 2010, the reagents – chemicals used in the lab- for that test was destroyed. As a result, when they rebuilt they had a backlog of viral tests to run and stopped accepting any new cases. The implications of this are obvious: how do you really tell that the drugs are working?
Also, the toxicity of the drugs were a cause for concern for me. ARVs are very toxic to the system and can cause a lot of issues in the body when taken. These issues include rashes, nausea and vomiting, diarrhea, higher risks of cholesterol and hypertension issues at the very least, to more serious issues like psychiatric disorders (hallucinations and so on), internal bleeding, issues with the nerves, kidney ailments, inordinate distribution of fat in strange areas in the body, and so on and so forth. While some of these side effects show up immediately and balance out, some do not show up until years after. Another reason for my concern was that I had been given some ARVs -albeit wrongly– both of which seem to be regularly prescribed for patients. I wanted to know if that mistake meant I had developed a resistance to those drugs. I also wanted to relate to the doctor my reactions to the drug at that time.
My third cause for concern was – or is rather- finance and timing. It would seem that with this development I have to be at that dreadful clinic as frequently as every month; I cannot describe how much I dread, loathe and fear that. If the inconvenience was the only problem it would not be an issue but that frequency of visit also requires money. There are monthly tests that need to be done to check organ functions especially the liver, and under this new FG scheme patients pay for these tests. All these in addition to the transport fare to and from the clinic. And then the dietary requirements as people on ARVs are meant to eat heavily and very nutritiously. Anyone who knows this blog knows my struggles with making up my cab fare not to talk of making ends meet…
I was happy to see that there were just a few people waiting for the counselor. I sat down to wait with the hope that I could express my fears to her and that she would listen and provide me with clarifying responses. After waiting for about 30 minutes, the other two gentlemen who were with me went in one after the other but quickly came back out. She had told them to wait. I was told by the more elderly of the two that there was a patient in there but that I should at least look in and tell them hat I wanted. I knocked and popped my head round the door. In the cramped room, there were two ladies sitting at desks opposite each other, and in between those desks sat two men on a bench. One of the men was the light-skinned guy I spoke of earlier, and the other – I imagine- was his assistant/relative. I said hello and the other lady who I did not know told me to ‘just go and wait outside’ without asking me what I wanted or telling me who/what I was waiting for. Thus began a number of hours of waiting. During this time, the patient had left the room and the two ladies were heard conversing and cackling loudly. At some point the counselor I knew actually left the room with a visitor and came back a while after. She left again alone and was seen exchanging anecdotes with the doctors. The elderly man asked her what we were waiting for and she said she was ‘coming. She did this several times. Finally the other unknown lady left the office. As she was leaving the elderly man again reminded her that we were waiting. She said we should wait because she was not the person to do the counseling. She went further and said the counselor wanted a lot of people to gather so she could give us a class. It didn’t matter that we were just 3 there, or that we had been waiting for hours or that the other people we were waiting for had not yet seen the doctor or done their vitals or anything. The counselor was tired of talking, period.
I noticed the elderly man had a prescription form and I began a discussion with him. He was sent to the counselor because he had stopped coming to the hospital for about 7 months and in turn stopped taking his drugs. The whole monthly thing was tiresome to him, he complained. I asked what taking the drugs felt like. he said he had never seen anything like that. There was a particular drug he was told to take only at night and, whenever he took that drug he would begin to see things; people who had died a long time ago, spirits and ghosts. He said the whole situation was very frightening for him so he bought a blood tonic and took that as he took the medicine and gradually the visions disappeared.
I had heard enough. I decided that it would actually be better to go home and google this issue than sit endlessly waiting for someone who had no time for me, anyway. I left the hospital but as I went I could not help wondering how much time I had left.
But now, I am worried and very scared…
Joie's Blog 