HIV:The Care And The Caregiver (Final)

I have told only a few people about my status. I think in all they are about 5. Other than the healthcare professionals, that is. The first person I told was my former friend in whose house I was staying, the first house from which I got evicted. The second person was a casual acquaintance ,N,who later became a relatively close friend because she kept me company and 'held my hand' via our BB chats. These two I felt some pressure to let in on the secret, but I regret telling them because I do not believe they had any business knowing. The others are Peter who helped me out at the hospital, my mother,- who I would have tried to protect from the heartbreak were it not that she had to be present for several other related things – and another casual acquaintance, Gaby, a doctor, now a very dear friend. It was Gaby who put me on the right path to treatment when I decided to go to LUTH.

Babies born in the Western part of Nigeria- mainly the Western states, from my observation- have a tendency to develop an ugly looking rash on their head, face and a bit of their trunk. This rash is known as ‘ila’ by the yorubas. It is actually a blister with cream-coloured head. I cannot describe how ugly it is and how terrible it can make a mother feel. Because seeing a baby like that makes it look like you are incapable of taking care of your child. My baby had that and nothing I did seemed to help. Even my mum was perplexed about the illness because she had never seen that before.  After a while though, with topical medication from a small clinic nearby, it cleared up.

Another condition my baby developed was a slight colic, or maybe colic is too strong a term, a tendency towards severe indigestion.  When she fed she needed to be burped and given a back rub, for over 30 minutes or else she had terrible stomach pains or worse, threw up the food. Even when she was burped she still had the tendency to throw up repeatedly if she was lifted. I later learnt that her body had problems digesting  the formula she was on, as she was only just learning to eat for herself. (At LIMH ,new mothers with HIV ,were allowed to choose between breastfeeding and using formula, but never both mediums. The reason breastfeeding, though a means of MotherToChildTransmission of the virus, is allowed, is to protect the vulnerable women from the interference of, and stigmatization from family members.  I chose formula.) I also learnt that she threw up a lot because in a newborn the upper sphincter in the digestive tract is not exactly closed or even well developed so it could not quite hold down food easily.

The thing about watching my daughter suffer all these conditions was the fear that it was all HIV-related. As I had not had proper screening and treatment and advice that fear- and the fear that I would die and leave my baby uncared for- loomed large. One day, I decided to go and seek treatment in LUTH.

I had heard a lot about the HIV treatment centre in LUTH, with N and my previous doctor, being my primary sources – maybe my only sources – of information. As you can imagine, the info from my doctor was not good; he spoke about a center for ‘them’ where there was a large crowd, no privacy and no care. N’s reports were slightly better, she had 2^nd hand info from her boyfriend whose sister was HIV positive with attendant opportunistic infections. Her boyfriend, a doctor, spoke highly of the place, but her description of the crowd and the length of time they took did little to assuage my fears. Added to that was my fear that I would be recognized, be stigmatized. I remembered then that my friend Gabby had spoken about working in that centre either as a resident or as an intern. So I called her. Prior to this we had not had many interactions, except for a long conversation at the studio where we met, a few phone calls, and a visit, from her, to my bedside the day before my nonexistent surgery.  When I called her, I told her my status and my desire to go to LUTH. I told her my fears concerning the place. She told me the crowd was quite something and that she had even see them the day before when she passed by the centre. She decided then to refer me to a friend of hers, a doctor who works in another department in LUTH but used to work at the centre before. She gave me his number, and his name (Dr D) and I called him.

LUTH

When I spoke with Dr D, he said Gabby had told him about me and said I was very wealthy. He said this as a joke but it was meant to drive a point home. He then asked if I wanted to do this privately or if I wanted to go through the process. Naturally, I chose privately, not knowing, and dreading, what the process would be. He then said I should go through the system first and then we could talk later. All this was on the phone. We fixed a meeting for the next day at the hospital.

The next day I was there bright and early and I called Dr D. He then told me to ask for a place. I cannot remember the name but even if I could I would not reveal it because one of the good things about LUTH HIV centre is that you cannot tell from the name that that is what they do there. When I got there I saw a lot of nurses and doctors bustling around, a lot of people sitting down, ostensibly waiting for their turn. It was busy and crowded but not in the disorganized way I had imagined. And though I was self-conscious, it really had nothing to do with the atmosphere. Anyway, I went to the lady Dr D sent me to, a buxomly , light-skinned woman, with a loud voice and an intimidating habit of not looking at who she was speaking to. She gave me a seat and asked me to wait for him. After a while, when he realized he was running late, he called the lady, who was at the front desk , and asked her to register me. In doing so, she as is expected asked for my details: name, surname, maiden name. When I told her I wasn’t married her response was ‘You will marry, and you will marry well. Don’t worry’. She then handed me my card and told me to continue to sit and wait for Dr D.

After a while, a nurse called me into a consulting room. Apparently, Dr  D had come in but because I didn’t know him I didn’t recognize him. In the consulting room was the official doctor who was supposed to be there, a lady, Dr D, and the nurse that called me in. The nurse smiled at me and told me she liked my sandals, she then gestured towards Dr D. He asked how I was and introduced me to the nurse who called me in, as his colleague, who was now her patient. The nurse, who turned out to be chief matron of the place, and a very warm, elderly woman, immediately interpreted that to mean that I was a doctor who had tested positive. She hugged me and reassured me that it would be all right. Neither I, nor Dr D who left a little while after the introduction, undeceived her.

Being taken for a doctor helped speed up the process for me. Whatever office  we went into , when the people complained that I was jumping the queue the matron would explain that they were trying to avoid ‘exposing’ me as I was ‘one of them’.

As with every hospital, the first step is records. Whether I had done one before or not, I was required to go for a blood test to check for HIV, my CD4 count and my viral load. However, unlike  LIMH, everything was done in a lab located just behind the rows of waiting patients, in the same building . As a matter of fact when I entered the lab, I noticed how organized and modern things seemed there. There were sterile boxes, labeled for blood samples, reagents and so on. The blood was drawn not with the regular syringe and needle, but with a needle, and a sealed specimen bottle with only a small hole for the needle. Once the required amount of blood was drawn in one bottle, it was exchanged, with the needle still in your arm, for another and another until they were done. The bottles were then labeled and kept in one of the sterile boxes. The result of the HIV test was immediately sent to file, while the CD4 count and viral load took 2 weeks. Before they took my blood, the lab guys made me wait so those who had been called in before I came in could be attended to. Then I had a feel of the ‘company culture’ of the centre when a counselor sent a member of a group of student- nurses to pick up the group’s,  mandatory (HIV) test results. The lab attendant, who refused to give it to the student, was livid, shouting at the counsellor and questioning her professionalism.

After the test was a compulsory counseling. Again the centre distinguished itself by the professional way the counselor spoke. She spoke of the causes of the HIV infection and the effects if left untreated. She explained about viral load and CD4 counts. She spoke of living positively and no being weighed down by the disease, saying that it was very likely that I could get married but that even if I married a person with the virus we would always have to have sex with a condom to avoid re-infection.. Then she spoke about ARVs and medication, explaining that there were drugs used in combination , that came in 3 lines (groups). She said each successive line was given when the virus did not respond to the line before it. (I later learnt that the 3^rd line is not given in Nigeria due to cost .) She then told me that not everyone was on drugs, depending on their CD4 count. A count of 600 and above was seen as healthy, and such people were not given drugs. People with a little less than that,599  up to 400, were asked to decide if they wanted to be on drugs. Less than that had to take the drugs because it was dangerously low. The reason people were asked to decide was because the drugs have to be taken extremely religiously, at the same time each day, to prevent the virus from having any time to mutate or gain resistance. She said once you were on the drugs, you were on it for life and you had to eliminate alcohol and sodas from your life, and you had to maintain a healthy diet. Apart from that, she said people experienced different reactions to the drugs, including nausea, vomiting, rashes, headaches, and some more severe conditions which should be reported because they were easily treated. Then she revealed to me that she was a mother of 4, and had been living with the virus for a number of years (I forget how many).  I don’t know if she made this revelation to me because she thought I was a doctor, or just because, but it helped. ( I later found out that many of the staff there are also HIV positive.) She said her children always asked her why she had to take drugs everyday at the same time, and she explained that she needed them to stay healthy.

After the counseling it was time for the consultation. The doctor took down extensive notes asking questions about how, when and where I discovered my status, what I thought the cause of infection was, the treatment I had received, my pregnancy, what sort of vaginal tear I had, what drugs I was given after childbirth etc. Then she examined me, looking at my eyes and my tongue, recommended a drug for some fungal infection she saw on my tongue. The real analysis she said, would come in 2 weeks when the results of my CD4 count and my blood test were received. Meanwhile, she wanted me to do a compulsory chest Xray to check for tuberculosis. She advised that I go immediately so the result would arrive at the same time as my other tests.

I first of all went to pick up my drugs, hoping I could afford them. The pharmacy was yet another door, within the same building. The pharmacist typed your name, address and phone number in their database and dispensed your drug to you. For free. I then headed to the diagnostic centre for my tests.

The diagnostic centre was the only place not located within the premises of LUTH ,and, for this reason ,and for the fact that I was not sure what the xray would find , I was very nervous. But the form written out by the doctor had a diagram showing direction on the reverse so it was not too difficult for the cab driver I hired to find. When we arrived there, I realized why this was not part of the LUTH facilities. The place is called Mecure- I hope I got that right- and it is exceptional. Once you step through the automated sliding doors, you enter an expansive, tasteful reception like something out of a movie. Seated at two or three desks are some receptionists who take your form from you, log you in and tell you to sit down. I had barely sat down for 6 minutes when someone came up to me to lead me inside. How they knew I was the person in the midst of all those people is still a mystery to me. I was led through swinging metal doors into a corridor that I can only describe as being Star Trek meets Ugly Betty’s Mode magazine offices. It was beautiful, modern and professional at the same time. The doors and walls were a mesh of stainless steel and glass with directions and signs in neon lighting. I was led to the front of one door and asked to sit down on the beautiful wooden bench provided there, to wait for my turn. While I waited a lady appeared with a tray of snacks, mostly brownies, offering one to everyone. I declined more out of shock than reluctance. A few minutes later I was called into a very dark room lit only by the red glow from a machine, made to take of my shirt, stand in front of the machine and breathe in. I then took time to ask the radiologist about the place. She said it was just that, a diagnostic centre with mostly corporate clients. Lagos state was one of their clients hence our being sent there. She said the result would be sent to the hospital.

This particular bit impressed me because I know many governments that would look for the cheapest, scruffiest, diagnostic centre to send their citizens to, in a bid to siphon the money.

Two weeks later I was back at LUTH, to keep my appointment. Again I was given the VIP treatment. The doctor I saw this time told me the results for my tests: CD4 count=576, viral load(I forget now, but it was very low) and TB scan, clear and healthy lungs. But he was very worried about my medication history, especially in relation to my child. He asked me to bring my child the next day, which was the pediatric  day. He also advised that if I reconciled with my baby’s father it was necessary for him to find out his status and place it on record.

The next day I came with my baby. Again I was accorded the VIP treatment and this was particularly helpful because the baby hospital is at least 3 times as raucous and full as the adults’. When she was registered we went in for consultation. This doctor was also as detailed and meticulous, if not more, as the one that saw me. He wanted to know her gestational age, weight at birth, illnesses, etc. When he heard about the “ARV story’ he had to check for abnormalities in my baby. He checked her eyes, threw her up and checked her reflexes. Then he said’ you’re very lucky’. He was quite nice to me and we discussed at length about other things than the baby. He showed me a picture of his baby and boasted about how the child had almost tripled his birth weight at 9 months, which led me to believe he was HIV positive as well. He then ordered the DNA/ PCR test for my baby to check her status, placing her on Septrin meanwhile. We were to come back in 2 weeks. it is regular practice for the mothers to stay back after consultation. The reason is that the are given tins of Cow and Gate formula for their babies. I think that is such a fantastic practice.

Two weeks later, my daughters tests came out negative again. We were still placed on Septrin, which ended about a month later.

The LUTH HIV centre is doing quite a good job. However there were a few shortcomings which you have probably already noticed but which I will point out:

The Doctor God syndrome: I did not mention it a lot here because it was  not done directly to me but I saw it quite a bit. The nurses were very rude, a lot of the doctors had no time to interact with patients, even the records’ staff were rude. I could put it down to overwork, because there are a lot of people in that place, but for the matron who always had a kind word for everyone but was always on her feet, and one other friendly doctor.

The Milling Crowd; There were quite a number of people waiting to be attended to, and the nurses were doing their best to handle them efficiently, by calling their names in order of arrival. But I learnt that some people arrived there as early as 4 or 5 am to be attended to by 8 or 9am. And that’s for regular patients. New patients are made t o wait, regardless of their time of arrival, until all old patients are done. So what happens to work, then? Especially knowing that you can hardly tell your employer you are going for HIV treatment. I was accorded frast service because they believed I was a doctor, but what of others who did not have that opportunity?

Therapy: I talked with a doctor, my third time there, who told me that the reason the ‘healthy CD4’s are not on drugs is actually because they cannot afford to give everyone the drugs. I was even told by my baby’s doctor that there was talk of stopping the funding for the cen, which would make it more difficult for a lot of people.

The Wealthy Client: there are those for whom HIV treatment is not a problem. They are wealthy, and doctors are willing to serve them. Even the same doctors who work in this LUTH centre. That was the reason for the question Dr D asked me. It’s sad that a country as wealthy as this, cannot afford to take care of the health of its citizens especially in relation to HIV, and depends on funding from foreign countries. This is one more thing that we have lost to the rich few, but quite ironically, it will still become a problem for everyone.

I could not get back to Lagos after my 3^rd visit for lack of funds, and/or a place to stay. So right now, I am not sure of my stand, health-wise. Or my daughter’s . There is a centre in Benin but when I drove past there and saw the way the crowd spilled into the streets and from what I have heard of the place, I’m not looking forward t going there. I hear it’s not free, though, it costs 1000 naira per visit. But maybe now that I am doing it also for research purposes I just might go there.