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.

HIV: The Care And The Caregiver (3)

If I you are finding these series of posts monotonous, dreary and tedious then I am doing a good job because apart from frightening, that is exactly how it felt then.
 I do not know if that is how it is done in all public hospitals but at the Lagos Island Maternity a doctor had to book you for surgery, on the day his consultant is billed to be in the theatre.That done, I was given a list of things I needed to buy for the operation, and this was everything! From the packs of 'drip' (intravenous drugs) to the anaesthetic, to the syringes and needles, rubber gloves, cotton wool, etc. The pharmacy handed all these to me in a large cardboard box and I felt like I was staring fate in the face. The nurses in the ward also required that I buy a whole carton (consisting of about 12 100ml bottles of bleach) which would be used as antiseptic for cleaning in the theatre.

I never went into surgery and the reason why, and the delivery are documented here.The only thing I can add is that at some point in the labour room, due to my medication history, the medical staff were not quite sure what drugs to put me on but they still gave me some ARVs intravenously, ( I believe it was Nevaripine and AZT but really I cannot remember much that happened inside the labour room apart from the pain and the 'work'.) My baby was also given a single dose of nevaripine at birth and then she continued on Zidovudine for 6 weeks.

I have taken the pains to describe the experience as objectively and as detached as I can be, because I want to impress that, for someone coming from ignorance to this point, it was quite a helpful experience. I will advise any expectant mother diagnosed with HIV to as early as possible register at the LIMH. That said, though, since we are talking healthcare, I would also advise that she register in a private hospital as well, as there are some specific practices that on the short run could prove counter-productive to the good work being done there. If you noticed, I highlighted a few phrases and clauses over these series, those are the things I intend to point out.

Let's begin with proper enlightenment and the attitudes to HIV. Just to set the background, I work in the media; therefore I have seen and heard most -if not all- of the publicity campaigns related to HIV/ AIDS. Why then did that not help to enlighten me? How could I have fallen victim to a greedy doctor? The answer is in the nature of the publicity/ awareness campaigns both to the public and to those in medicare. Hepatitis B, for instance is potentially more deadly than HIV. Gonorrhea is sexually transmitted. And people with hypertension and some forms of diabetes are on drugs for life, like those on ARVs. But you can easily walk into any hospital and be treated for all of these other illnesses without anyone raising an eyebrow..So why is HIV given such a bad name? The answer I have come up with is that pushing out the message that HIV is such a scary, fatal and all-round terrible illness is actually beneficial, economically, to some people. It is this fear and stigmatization that my previous doctor was trading in, believing- and for the most part rightly too- that people who could afford the personal attention would not take the chance and try the public options. But he is not alone. The AVRs he was dispensing, are supposed to be controlled drugs, but he was getting them from a source! He definitely was not buying them from a pharmacist, so it's an issue with many aspects.My take on this requires a whole post so I wont go much further for now.

Another practice I felt quite uncomfortable with in the LIMH, was the tedious registration process. In this situation, I speak both from the perspective of a pregnant woman, and that of a person diagnosed with HIV. If my experiences are anything to go by, quite a few women would come into that hospital as a last resort, having been rejected by family and friends and hospitals after the dreaded diagnosis. How does a bureaucratic registration process help them? And who can they turn to for a blood donation? I even had two people try to give blood for me but they said the first had a low PCV and the other was recovering from an illness or something. So if I did not know that senior executive what would I have done?
The other clog in the wheel during registration was their unwillingness to record me with a maiden name! In this day and age why is it so hard to understand that a woman can have a child without being married? Everywhere it was ' your husband' and so on. Even  when I had given birth, the lady at the office where I got my notification of birth certificate, was insisting on writing my surname as  the same as my daughter's saying she would get into trouble if she didn't! As a  matter of fact she still did and so I tossed the notification aside as the mother, a Mrs Joie ----, does not exist. It was the same thing with the birth certificate. It's just crazy! In a cosmopolitan state like Lagos, where even in government you have single mothers, I do not understand how such backwardness still exists.  I am emphasizing this because these are the sort of things that could send people into the arms of quacks.

It's also quite off-putting that in a hospital that cares solely for pregnant women- women with an uncomfortable and notorious habit of peeing every second- no attempt has been made for proper restroom facilities. LIMH like most public hospitals is filled to overflowing and has a constant flow of human traffic, mostly pregnant women. However, the toilet facilities for out-patients, is appalling, to say the least. The only available toilets are a set of 4 'cubicles' in the inner room of a shop that seemed more like a storage room for crates of coca-cola products, bags of 'pure water' and cases of bottled water, loaves of bread and other knick-knacks. You paid 10 naira and were ushered into the place or asked to wait for the next available 'opening'. Behind the worn-down swivel door, that seperated the shop from the toilets, the floor leading to the cubicles was flooded with water from a perpetually open tap,and was overcrowded with all sorts of pails, jerrycans, cups and every vessel for carrying liquids imaginable.As if that was not enough, depending on the time of the day you came in, you would see all sorts of people, these water hawkers who pushed wheelbarrows of jerrycans in the streets,security guards who probably wanted a bath,  muslims about to perform their ablution, or vistors/helpers to those in the labour ward - rarely ever pregnant women- fetching water or waiting to fetch. Apparently, the place also doubled or tripled as a place for buying water, and they sold to everyone who could come into the gates;  and that would be EVERYONE. You wade through that crowd and into the cubicles, which were also flooded, so bad that their doors, eaten badly by mold, made whoever was inside visible up to mid-calf. The broken down toilets with their open tanks could not be flushed so you were expected to use one of the pails or whatever to flush the toilets. Oh! and beside the toilets was a bathroom, mostly for the same people fetching the water. The funny thing is that the place was not dirty. You could see through the flood, the ground was swept and all that, but that did not make it any less disgusting. Why can toilets not be built for pregnant women that are decent and hygienic?

And now, the piece de resistance. I have deliberately saved this for last. It is one of the downsides of medicare in Nigeria, and I call it the Doctor God Syndrome. I mentioned earlier that my previous doctor was dispensing what he claimed were ARVs to me without telling me what  he was giving me and I didn't ask. It is quite a common practice in Nigeria for the doctors to treat their patients somewhat contemptuously or patronisingly. This manifests in several ways; during consultation the doctor barely has time to listen to you and scribbles away without telling you his observations and/or thoughts, he prescribes drugs and/or therapy but does not bother to explain them or inform you of them and he acts like you are a bother or a nuisance. The reason for this behaviour , in my view, is not far-fetched.
Historically, doctors and those in the medical profession have always been revered in Nigeria: doctors, more. Nigerians, especially those born in the 60s downwards, are like Jews. For them there are 'noble' professions; Medicine, Law, Engineering. So the doctor is the closest to God and a symbol of life by their standards. I am not exaggerating here, in those days it was a pride and a huge sense of accomplishment for a parent to have a medical doctor as a child. This reverence, gradually became the norm.( Just last week, when I went to the hospital for my malaria, I had to severely scold the doctor I met. It's actually my daughter's hospital but for non-gynaecological issues I go there. The doctor was neither courteous nor warm, and this would be the third time I am noticing this. When I told him my complaints, and he wrote his faint mumble 'query malaria' was the only sign that he knew I was still in the room. He wrote some tests down that he wanted me to do, I was about to ask him about it, when he raised his voice and told me to go to the lab before the person in charge went off. Hmmm. Let's just say I told him where to get off and advised him on a change of career. And I did not say this with love.)
 Another reason, is the high level of  illiteracy in the country. An uneducated person does not, cannot, ask questions, because he/she will not even understand the answers and only wants to get better. Public hospitals are full of such patients, and so the doctors tend to just treat them like statistics rather than people. This was why my LIMH doctor took a liking to me because I was not the regular patient he was used to. I remember one day, in the consulting room he shared with some other resident, the marked difference between how he treated me, and how the other (lady) doctor treated her patient. She was all frowns, had no greeting for her patient, just told her to lie down. And when she(the patient) dropped her bag on a chair so she could do that, rudely told her to pick it up. When the lady lay down, the resident shouted 'lie down properly', whatever that meant. At the end of the day, all she did was measure her fundal height and ask if her drugs were finished. To say I was disgusted would be putting it mildly.
A third reason, which is all my own theory, is that because of the nature of their jobs, doctors have to learn to become detached from their patients. Maybe in doing so, they inadvertently develop a thick skin. Nigeria is not an easy place to be a caregiver, and Lagos, more especially. The doctors are dealing with the same economic issues as the patients, and they still have to be nice to the scores and scores of people they see everyday. But that's just an excuse.

The ramifications of this sort of behaviour from doctors and medical staff are obvious and far-reaching. What if I was a wealthy illiterate with enough money to get a Caesarean done? I would probably have ended my life and that of the child in the first hospital ! Not to mention how drastically wrong my treatment for HIV would have gone. And then the invisible consultants who never see their patients. Is that wise? I remember a lady who had a ruptured uterus in the same labour room as I was, at the same time. I heard they were prepping her for surgery by about 7pm. It was then about 2 or 3pm, and the lady was groaning in pain. I also recall another act of impatience a doctor exhibited with me. Apparently, I had suffered a tear in labour so I needed to be stitched. I was given general anesthesia prior to this because my placenta could not be expelled and it had to be manually evacuated.I therefore woke up to the pain of someone stitching my vagina! In my drugged state i was wincing and jerking and this nitwit actually slapped me hard, twice on my legs saying he had other patients to deal with and my reactions were slowing him down.
I have heard that one of the reasons there are centers and clinics dedicated to the treatment and prevention of HIV is to be able to keep track of the statistics; those who have the illness, those who are being treated, those who have died,etc.However, the way people are treated in these centres and clinics as illustrated above, can go a long way to providing the right or wrong information/ data . This was one of the reasons I decided to look further for my treatment needs. Apart from the fact that I also noticed that after the birth of the baby, the hospital really were not equipped to handle anything more.

Next Stop,  Lagos University Teaching Hosital (LUTH)

HIV: The Care and The Caregiver (Cont)

( I'm a bit ill- been ill since Monday or so. Nothing major, hopefully; the tests show malaria. The drugs I have been given are not helping matters though; Coartem. They tend to make me woozy and weak. Added to that I am not eating well. I have no appetite so that makes it worse with the medication. I am actually trying to explain why this will be a short post and why I will cut to the chase.)

Bear in mind that my primary purpose of going to that public hospital (BTW it is called Lagos Island Maternity Hospital) was to get an affordable Caesarean Section. Like I said earlier, I still believed that it was necessary for me to undergo the surgery, and there was a part of me that was terrified of natural delivery.
I made my request for CS known to my new doctor along with a scan result which showed I had a fibroid. He was all in favour of doing whatever I wanted- I still believe he was smitten by me- but he had to speak with the consultant. The Consultant then explained a ew things to him which he relayed to me:
1. Being HIV+ is not a mandate to have a CS. 
2. Having a CS does not drastically reduce the risk of mother-child transmission of the virus as the CS has only a 6% advantage over a natural delivery
3. A CS is a major operation with high risks and in some cases severe reactions (to drugs and other things) 
He then asked me if I was sure that was still what I wanted to do. I answered in the affirmative. he went in to see the consultant and then came out to tell me that I had to check my CD4 count and my viral load. He pointed me in the direction of the general hospital, a few blocks away, across the street. He wasn't sure but he thought I should check there.
Then, I had never done any HIV-related test other than the main test for the virus so I thought it might be another short blood scan. Unfortunately, the hospital I was sent to didn't carry out the test there but at a much farther branch, it took 2 weeks to get the result, and it cost about 14000 naira ( about $93 then). I had neither the money nor the time, because I was very past my due date according to the scheduled CS, and well within  'term'. When I  went back and told the doctor he told me to come back that Sunday and be booked for surgery against Monday.

(To Be Continued)

HIV : THE Care and The Caregiver (cont.)

 In between trying to raise money for my surgery and worrying about appropriate prescriptions, life was still happening to me. and life as we know is quite... ahem eventful. I was getting kicked out by my friend as I described here. I had to move to another friend's house quite a distance from my former location. Now bear in mind that my former location was an estate (that is a gated community for my foreign readers) and that the clinic where I was slated for surgery was located in the estate. It says a lot about my state of mind then that despite all I had discovered I still wanted to go through with my treatment and delivery in that hospital; I felt I had no options.
Luckily for me at that time I was contracted as a freelancer, to carry out an extensive recce for a show so that meant some money for me- or so I thought.One of the suppliers I needed to get quotes from was an airport protocol personnel, let's call him Peter. He came to see me at my friend's house and when the discussion shifted to how I really needed money for my surgery so I hoped the client would pay on time, he told me of a public (maternity) hospital in Lagos where his wife had delivered 3 of their 4 children by Caesarean Section. he spoke glowingly of how the hospital had very experienced staff and how they had taken good care of his wife. he also added that I would have my CS at a fraction of the cost I was being asked to pay at my present hospital. I took in all this info with a bit of joy but with trepidation; he didnt know about my status so I felt all the benefits of going to that hospital would not be applicable to me. Nonetheless, I decided that I might try the place.
Peter had mentioned that he had a cousin that worked in the Hospital Management Board offices so if I wanted to register at the hospital he would facilitate it for me. I therefore called him but I told him that a friend wanted to register at the hospital but she was HIV positive and afraid of stigmatization. (How I hoped to get away with it is still a mystery to me but desperate times...) he gave me the contacts for his cousin at the HMB offices and I went there, and there the real issue actually begins.
Lagos state probably has the best public healthcare system in the country. For starters it is heavily subsidised/ funded and full of very well-trained personnel. However, there are a few loopholes and chinks in the system which I will discuss later but for now let me give an objective description of my visit there.
Peter's cousin took me to the hospital, a large noisy, bustling, building next door, where he proceeded to personally 'midwife' my registration. (The registration is a relatively tedious process that requires approval from several offices and a number of tests.) One of the requirements for registration is that you get someone to donate blood. This I guess, is for any eventuality on the day of delivery, and there is no going around it. Usually the pregnant woman's husband or relatives make the donation but in my peculiar case that wasnt possible so Peter's cousin had to get a note from a very senior official of the HMB that my registration should go on and I would get the blood donation before I gave birth. As a matter of fact he had to come down to the records offices himself and speak with the man in charge. Another small delay was the problem of next of kin and maiden names. For some reason it was difficult for them to put me down as a 'Miss' with the same surname; but we got over that.
I forget if the registration issue took more than one day or not but when it was close to ending I was sent for a compulsory HIV test in the laboratory and for counselling at the VCT centre within the premises.This is a compulsory step for every pregnant woman registerd there and one I must commend them for.  Because everyone went for the tests and the counselling you would never know who was positive and who was not. And when the results came-the lab sent them through the VCT to the nurses- the nurses never treated you differently except to ask you privately what drugs you were on and if you were taking your drugs. It was there and then I learnt that the Nevaripine was also not the right therapy, and the nurses were dismayed because it was quite late for anything to be done about it. I was also told there that the name of the medication that an HIV positive person was on was not supposed to be secret. Unlike other drugs that the doctor would take out of the pack and place in sealed bags, HIV ARVs were exposed and the patient is informed of what she is on and why she is on it. To say I began to realise the exten of the mess my doctor had put me in , would be an understatement. However, my antenatals went on.
To attend antenatals you had to arrive really early in the morning because there was always a long queue of expectant mothers.You would request that your case file, it would be sent to the waiting room and arranged by order of arrival. The nurses would then weigh you and you would have to buy a little bottle to pee in. They would then dip a test stick (one for each person) in your little bottle to test it. After that you would wait until your name was called in to see the doctor.
Seeing the doctor is a whole other thing really, and one that can be defined as burdensome.'The doctor'  consisted of several residents and -I suspect- some interns under the supervision of a consultant. The consultant was rarely ever seen by anyone except there was a major emergency. The doctors were not so friendly and quite rushed, all they did was just check your fundal height, ask if you had any complaints and prescribe medication..but  I was lucky as I struck gold in my own doctor. He took time to talk to me. He later told me it was because he never actually spoke to educated people in the line of duty.
(to be continued)

HIV : The Care And The Caregiver

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)

The Resurrection

I don’t believe in coincidences. I am almost certain that everything that happens to us is part of a grand plan. I say this because it  is no coincidence that I stumbled on a blog that made me dust myself off. I cant speak enough about this woman. I felt in her a kindred spirit when she worried about coming to Nigeria, it was the same feeling of depression I sank into and have been in for the past year and a half. The feeling of leaving a perfectly ordered- or at least comprehensibly disordered- life for uncertainty, lack and independence. Unlike me, however, she has/ had the strength to pull herself up and force herself to see through not her eyes, but her soul. And in doing so she rediscovered herself. And in reading her stories of rediscovery I found my purpose as well. I credit her with being the living vessel through whom I was roused again. Her name is Asha, and you can read her blog here.

The point I am making is one that I also saw on another blog very recently.(That , also, is not a coincidence.) Wherever you are, at any point in time, is where you are meant to be (thank you Mamuje). However you got there is absolutely irrelevant; what’s important is finding what you are there for. For the past few months I asked why me? I felt I had been dealt way too many cruel blows by life. I felt my life was just given to me so I could make up some weird statistic.But now, I see it differently.

A lot of people have said I am strong, I used to laugh and disagree with them. Strong, I said, is what you have when you have hit rock bottom. But now, with all modesty, I agree with them.  I am strong only by divine design. I am not meant to crumble under this weight: ‘God is just… He will never allow you to be tempted more than you can resist’. This weight is not for me to weep and wail; it is for me to share. People Living With HIV is an amorphous term. Joiedevivre living with HIV,and struggling to take care of her daughter, is not. All the sponsored public service ads, all the noise about HIV/AIDS never struck much of a chord with me. And much as we like to think that it is,this illness is not really being taken care of health-wise in this country- and who knows, maybe even in this continent.

I strongly believe that I am called to give people living with this thing, this embarrassing and emotionally crippling illness, a different tone of voice. Especially young ladies like me. By God’s grace, you will experience in greater detail what it means to live with this illness in this country, both from the perspective of healthcare, social life and economy, so that you and/or your loved ones will never have to experience the illness.

My name is Joie and I am HIV positive… amongst other things