Monthly Archives: April 2012
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