HIV : The Care And The Caregiver

Standard

When I went to the HIV treatment center in Lagos University Teaching Hospital (LUTH) it was out of desperation, fear and frustration.

 You see I learnt that I was HIV positive when I was pregnant. After that realisation came the normal fear and sadness, but my doctor, in whose hospital I registered for my antenatal classes, was quick to assuage my fears. He told me how the fear of HIV was worse than the illness itself and how it did not have to affect the baby. He explained that he had several clients who also were diagnosed HIV positive but were living relatively healthy lives with their children. He said because of the nature of the illness and to cut down risk of mother-to-child transmission of the virus, the only mode of delivery for me, would be by Caesarean Section. The key was taking your medication. My medication and sundry tests would come to about  10000-15000 naira every month (roughly $80-100).Every other week, I was required to do a liver test which basically required drawing blood but costs a little over half the cost of the drugs. He repeated over and over that I should tell him I needed a refill at least 2 weeks before my drugs ran out because they were difficult to acquire. He didn’t mention what medication he was giving me and I didn’t ask. I received about 4 blister packs of the same small whitish pill.  But I ALWAYS read the small print and I read the name of the drug, stored it in my memory with the intent to google it later.

Three weeks after I had been taking the drug – two tablets a day which he later changed to one- I believe I went in for a refill when he changed my drugs. He seemed a bit agitated and distant when he was giving me the new one but I put it down to the stress of procuring the drugs. Infact, I was actually happy to stop taking them because they made me feel really ill and gross. He told me to discontinue the old drugs immediately and begin this new one which he called NEVARIPINE. The thing is, at that time I was very bewildered by the whole pregnancy, being abandoned by the all-of-a-sudden married boyfriend( by the way, that issue needs an explanation) and losing my home that I just wanted something to take care of itself, or at least be taken care of. Because of this I did not pay attention as I would have ordinarily to some issues. Anyway, after the drug swap I was on that medication and routine for about 8 months. That in addition to the other costs and routine of antenatal checks and balances. As the time for delivery drew near he began to remind me repeatedly about the Caesarean and how I had to pay for it on time. His charge was 300000 naira (about $2000).

 By then, everything had began to come down heavily on me. My friend who I was staying with had started showing signs that she needed me to leave as a matterr of fact she was deliberately making life difficult for me, my job had been taken from under my feet, like a carpet, and I had fast run out of cash. I went to plead with my doctor, since he was the owner of the hospital, and could make the rules, at least grant me a payment plan. He seemed to consider it but told me that the problem was that he would have to invite another doctor in for the surgery and that even doctors were discriminatory of patients with HIV. He even put a call through to someone who he introduced to me as the surgeon for my Caesarean. He spoke a bit to the guy about my situation and the guy seemed to be backing down a bit. And just when he had practically said the fee could be halved, my doctor said ’ but she’s XYZ positive’. That is the way some doctors refer to the virus. Immediately the guy on the other end said ‘then let her pay the full fee.’ The conversation ended very shortly after that. I wondered aloud why my doctor had mentioned my status and why the other doctor reacted that way. He said as his colleague he was bound to full disclosure and that there are risks involved in treating a patient with HIV so they- the doctors- always ask for a high amount of money. He said he just decided to attend to all patients, including HIV positive ones, because he did not like the discrimination and just wanted to help ease the stress. ( He had said this many times previously.) It was after this that I moved out of my friend’s house, which was in the same gated community as my doctor’s clinic, to another friend’s, and that I began to look at other options as I described here. It was also after this that I googled the first drug I had been taking as an Anti RetroViral (ARV) drug. The brand name was EFAVIR but the generic name is EFANVIREZ.

Please google it but for the purpose of this blog, I will explain briefly: Efanvirez is not a drug to be given a: to pregnant women because it can adversely affects the foetus b: alone and not as part of a combination treatment because it has very grave side effects  and c: indiscriminately or as a first line of treatment, without tests for CD4 counts and viral load to determine if it is the regimen that is required.

That notwithstanding, a freelance gig led to a meeting  with a would-be contractor, who pointed me in the direction that ultimately ‘opened  my eyes’ and saved my life and that of my baby.

(to be continued)

Advertisements

6 responses »

  1. Interesting blog. I could learn a lot from your story. I am very interested in HIV/AIDS awareness and in fact, that is my area of focus for my pathway activities in med school. My idea is to learn what i can and see if i can use that knowledge back home. Interestingly, besides men who have sex with men, african American women have the highest infection rates today in the US. Coincidentally, we just did Antivirals last week in pharmacology, so i recognized Efavirenz. A c-section is not the only way an HIV positive woman can have a child, it just helps reduce the risk and sometimes depending on the situation, it might even be more risky. I'm really looking forward to reading more from you. Thanks for sharing.

  2. Hey Madame StingThanks for dropping by. It would be interesting and important to know if the rate if infection of African American women is linked in any way to poverty and /or illiteracy. I ask that because from what I saw at the clinic there were more women there as well, most of them married. But their husbands either refused to come and be tested ( which presupposes they already suspected they were infected)or rejected the diagnosis.We cannot get enough people in medical care interested in this because it really is a major issue for us here.Good luck with school and please dont be a stranger.

  3. It's not illiteracy or lack of awareness for these AA women (not sure about poverty, will look that up) but rather the inability to negotiate safer sex practices in their heterosexual relationships for a number of reasons. Most important is power. There is the idea that eligible black males are scarce, this gives the men more power in the relationship, so the women don't want to rock d boat so to speak by demanding condom use. They also might not want to shatter the illusion of monogamy or worse still be accused of being unfaithful. Then there's the risk denial, where they don't think it can happen to them.Of course there's more to it than what I just mentioned, but my research project is dealing with why the infection rates still keeps going up despite all the awareness about the disease. It's pretty interesting stuff. The one parallel I've been able to draw between AA women and Nigerian women(esp married ones) is the "inability" to demand safe sex practices from their partners. They know their husband's are unfaithful yet they can't, don't or won't demand condom use. I think it's mostly can't. You keep your fingers crossed and pray he doesn't bring home any diseases. There's a lot of work to be done in Nigeria in terms of awareness and prevention. There's still a lot of stigma attached to d disease, which is why such men would rather die than get tested. There are also a lot of misconceptions about the disease too. Hopefully, I can play a little role someday. It's so sad to learn that the Anti-retroviral drugs are not readily available or affordable in Nigeria. It's really not a good idea to start and stop those meds because that's when you develop resistance to them. Also, people are usually never given just one type of drug, It's supposed to be a cocktail. I have so much to learn about how these things actually work in Nigeria.I apologize for my epistle. This is something I am passionate about. I had to delete my initial comment cos i was typing from my phone and it was so stressful trying to correct typos 🙂

  4. Thanks for your epistle. It's really given me food for thought. I am fascinated at the relationship between female empowerment, self esteem and the high rate of infection. Yeah, I learnt about the cocktail of drugs which I'll speak about later on. And about delivery for pregnant women.

  5. Pingback: S**t Just Got Real : LUTH Chronicles, April 2015 | Joie's Blog

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s