Tag Archives: LUTH

LUTH Chronicles 2015 Edition

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I have been mulling on the direction to take in writing this post because I am not angry and in need of a rant nor am I depressed and looking for an outlet. Actually I am in a very funny but good place right now. 

My first appointment for 2015 fell in January and I just couldn’t wait to get it out of the way so I could get on with more important things (you all know how I hate hospitals). As usual I left pretty early for the hospital all the while anticipating the needles that I was going to receive. It was my day for tests.

The hospital attendants were nicer than usual, primarily because it was the beginning of the year and they had not had time to gather up their frustrations and bring them to work. That said, there are two ladies who are so professional and nice. They are the nurses that take our vitals.  They are always pleasant and friendly and they sometimes giggle mischievously. There used to be one who had serious issues that she obviously could not conceal but she has been removed from there. These two newer ladies are a breath of fresh air in a sea of gloom. I was told I had lost 4 kilogrammes. Yaaay!

The morning was not devoid of drama, that would be so out of character. The matron who is usually calm and very level-headed was seen screaming at a patient. She later explained that the patient had self- medicated and was terribly ill and looking for a solution at the hospital even though that was  not her appointment day. (People are getting desperate.) And then my simple name was so mispronounced that I had no idea I had been called in until over an hour later.

This would be my first time having my blood drawn in the new dispensation, so I was not a little curious as to how the process would go. I was sent to another building to pay, by the doctor I was consulting. I arrived there to meet a man, alone in a room, who seemed like he had nothing to do. He quickly wrote my receipt and I left. Someone came in immediately after me, but other than her, there was no-one else. If that did not confirm my suspicions about the effect of a charge on the people’s willingness to be treated, the fact that there was no queue leading to the laboratory, did. Usually there would be several people waiting on a queue, and several others popping up in between, who stepped out for one thing or the other, waiting to have their blood drawn. This time, the waiting area was bare, and when I asked a lady if she was waiting to go into the lab, she told me to just go in. I went in and there were only two people ahead of me. I gave my blood and left.

As an aside, if not for anything, I have a vested interest in the elections that are supposed to occur this year, for reasons of improvement in healthcare in the country. If we continue like this HIV/AIDS will become a lifestyle epidemic and all the good work done to control it will be undone in just a year. People did not turn up to draw their blood for the test because they could not afford the requisite 5k naira. This just makes me sad.

Anyway I was happy to go home early and prepare for my future.

Watch this space

 

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LUTH Chronicles ( July 2014)

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My last appointment was in July but I was worried, wondering if the clinic would operate, as doctors in Nigeria had embarked on a national strike. Finally, I found a number of the healthcare staff who always demanded money from me and with much hesitation I called to find out. He assured me that only the clinic would be functioning. Thumbs up to LUTH for that.

As usual I was out of my house by 5.30 am and at the hospital in less than an hour, later waiting the 3 or so hours before the clinic began stirring. Sure enough, an hour and a half later we began to file in for our weight to be checked. Usually to avoid chaos people are asked to file in in groups of three, row by row. More often than not, some people, probably seeking to prove their ‘Nigerianness’, will jump the queue and go in even when their row is not anywhere near being next. Of course this irritates patients, especially the early comers. And  it really makes no sense to rush because eventually people are only attended to, by the doctors, according to the order of appointment cards ( earliest to latest) not their vitals- except for the occasional cases of unscrupulousness now and again.  A few minutes after I arrived and as I was settling in, I had noticed a young man walking in, to me he seemed well-dressed and somewhat attractive. I was a bit curious about him because of the aforesaid virtues and also because I had never seen a man fitting that description since I began to attend clinic. When the queue-jumpers made their moves however, he was one of them , and suddenly all his qualities faded before my eyes. (LOL).

A short while later, one of the healthcare attendants, a rather pleasant, soft-spoken man came to address us. (Now this man unlike most other staff is particularly loquacious but very humble towards the patients and I always wondered why. I found out from his conversation that day, that he too, is a PLWHA and realistic about his situation.) He started by scolding those of us who never attended support group meetings, saying he could not understand why the crowd he sees on clinic days thinned out considerably during support group meetings. He said apart from it being a forum to find a partner for marriage, there were things discussed at those meetings that we would not hear at the clinic until later. After a bit of hesitation- for effect- he gave an example.The consultant in charge of the clinic had attended the last support group meeting and had informed them that from October or thereabouts HIV treatment would no longer be free.  International donor agencies on which Nigeria is dependent for HIV treatment were experiencing what they referred to as ‘financial fatigue’, the rate of infection in Nigeria instead of dropping was rising so they had decided to cut off some support. The overall effect would be that drugs would be free but the accompanying tests done at regular intervals to check for proper liver, heart, kidney,etc function would have to be paid for. He assured that they were trying to make the costs as low as possible. With everyone being very silent as he spoke, the piercing wail of a caregiver, whose patient had lost their life, ostensibly due to the doctors’ strike, brought our realities painfully home.

I already anticipated the end of free HIV treatment/care in Nigeria because it had been in the news for weeks, however I do not think that that is a solution to curbing the rising rate of infection. Of course there’s no gainsaying that it is a huge shame and an indication of how badly we have mismanaged (and are mismanaging) our resources in Nigeria that we have to depend on aid for any aspect of our healthcare,and we cannot even manage that properly, but for the dependent few it is what it is. Even now that treatment is free a lot of people find it hard to come to the centres. This is because like I have said previously most of the attendees are low-income earners who have to plan their finances to travel to the very few treatment centres available. Some of them who do not have treatment centres in their states, or who may experience stigmatization in their locale, have to travel out of state for treatment. Even I can attest to how much of a struggle it has been for me to come up with the transport fare since my period of unemployment. It was for these reasons that the visit intervals were extended from 1 to 3 months. I reckon that this is the same reason for the low attendance at the support group meetings for a lot of people. For me, however, that and the fact that, unless I have to, I do not want to be at the treatment centre for any reason. I am also very distrustful of a support group run by people who for the most part treat you like you are an unwelcome, inevitable distraction. I am certain that with the introduction of these fees the centre will lose a few patients,depending on how high the fees are. In my opinion, the answer to actually reducing the rate of infection and effective treatment is to decentralise these treatment centres and increase education/awareness. I am talking mobile treatment centres in rural areas, in campuses, at bus stops. Stop making the drugs controlled substances because that only just makes it more available for the rich. Make it easier for people to ask for and receive treatment and things will change. But of course these cannot be done if there is an irresponsible government in charge.   Another nurse came to speak on free cervical cancer screening and then it was time for consultation.

My case note was given to a doctor I had not interacted with previously.  I actually made my judgement of her from afar seeing how curt and aloof she was towards other patients before me, but something she did and said made me change my opinion of her, and indicated to me that a major factor in your treatment was the disposition of the doctor you were sent to.  As I pointed out in my previous post, my CD4 count was dropping as at the last test. The doctor picked on this immediately and, observing that I was meant to carry out another test that day, booked my next visit to fall a month from that day as opposed to the usual 3 months . She explained that if my CD4 was still dropping it was necessary to catch it early and begin treatment rather than wait 3 months. I was impressed because she was obviously paying attention unlike the other doctor I had been seeing. However, I was not sure if  I was ready to begin taking drugs; at least not from this treatment centre.

If I think going for consultation is tiresome and stressful then being placed on drugs is twice that. Everyday at the clinic, the patients are divided into two groups: those who come to collect drugs and those who come for consultation. Those who come to collect drugs have to be at the clinic twice in 2 months, once to collect their drugs and the other for consultation. Some people try to make their appointments coincide, especially those who have to come from out of town, but there is always a bit of a problem as sometimes when they are in consultation, or having their blood drawn, it could be their turn to pick up drugs, and if they are unavailable they are quickly glossed over. Another factor is the side effects of the drugs. You are advised to come to the clinic immediately you notice any side effect but it is a chicken-and-egg situation because if it is not your day of appointment you will have to wait until the end of the day before you are attended to.  A number of people resort to bribing the staff to help them pick up their refills, so they can come for only their consultation appointments or whatever works. There has got to be a better way. So all these were at the back of my mind as I walked away at the end of the day.

‘Are you done?’. I turned in the direction of the question. It was a man I had observed at the laboratory where we went to draw blood. He had been pretending to misunderstand his position in the queue and had insisted on going ahead of a few people who were very displeased about it. ‘Yes’, I said. ‘Oh, you must have come very early.’ I thought he was saying this in passing until I looked over and saw that he was actually coming close to me, probably attempting to make conversation. ‘Yes’, I said as I walked hurriedly away.  Even if I decided to overlook all my reservations about the centre, and miraculously developed any interest in its matchmaking efforts – which I wont – bad behaviour and indiscipline will not be uppermost on my partner selection criteria.

The Deep, Dark Hole

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Misery breeds great art, or so they say. It’s why artistes of any kind do their best work when they are unhappy. The relevance of this is that I have been unable to churn out the words that reveal my state of mind for quite a while. First, it was an unwillingness to indulge in writing, a somewhat shallow means of expressing this depth of emotion, then, eventually, it was a temporary freedom from that dark cloud of desperation that enveloped me. Now, though, that I am in between both spectrums I think it is time to write. This is going to be a very long post because I feel like I have a lot to explain that I have not previously.

During my last visit to LUTH it began like any other day except that because I had an appointment I was a bit more impatient with the staff’s unscrupulous ways of doing things. It didn’t help matters that despite the fact that our hospital cards were arranged in order arrival, they somehow managed to attend to people who came late much earlier than those who came early: of course there was no coincidence there. They were helping their friends. I saw the lady who was demanding money from me and promptly ignored her. She noticed and came over to ask how my mother was, in front of everyone, I just told her I did not want to talk about it and I believe she got the message because she stayed off for the rest of my time there. The consultation with the doctor proved what I had been suspecting for a while: my health was failing. My CD4 count had dropped by about 70.

When I attended clinic 3 months before, I was very surprised at my weight. Even though I had been involved in intensive physical exercise a few months before then, I had not been committed to it or my diet in weeks preceding my hospital appointment so there was no real reason why I was losing the weight. But in retrospect I remember I was under tremendous pressure at that time; I had been given a printing job which had so many hiccups I changed printers 4 times; I had just moved out of my own flat amid a lot of wahala into a room in my brother’s house with absolutely nothing on me. I had also been a bit ill for no reason, just feeling generally unwell, weak and indisposed. Obviously the stress had gotten to me.

But it was not the fact that I had failing health that aggravated me at this clinic visit, it was the way the doctor flippantly addressed it (and me). She was not rude or cold she just seemed disinterested, like I was just a statistic, which I probably was. She asked if I had been taking my immunity boosters, which I had, and then told me to stay off things that could cause me to be sick. I wanted to know if stress could be a factor but she just said ‘anything, anything’, like she was tired of the conversation. For me the emotions were many and varied. I had hoped to stay as long as forever without needing drugs. In truth by WHO standards I should be on drugs by now, but since Nigerian politicians insist on squandering our resources we have to rely on international funding for treatment and care of HIV. As a result, drugs are rationed in the country, and even healthcare is limited. For instance I do not know my viral load which is a huge determinant of how the virus is spreading in your bloodstream. I haven’t known in 4 years because the clinic I attend got burnt and with it all the reagents they needed to detect viral load. Driving blind is not the way to treat HIV, you must at regular intervals know what progress you are making, using every empirical measure available. There are people who have taken their medication so regularly that their viral load is undetectable- you can barely find the virus in their bloodstream. I know two of them and you probably knowone famous one: Magic Johnson. People like that can no longer easily transmit the HIV virus. This is necessary to know. In LUTH and I daresay Nigeria, it’s as though the hospital dangles your drugs in front of you and says ‘don’t worry about HIV we have the drug for you; just fall very sick first’. So this was one of my concerns, with the CD4 drop, when should I be worried?

Another major concern of mine was the obvious one: death. As a person I have no fear for the actual death itself; I just worry about the people I am leaving behind. My parents and my daughter. I would want to make life a lot easier on them before I live and while I am alive. Debilitating illness and death make that impossible. It might seem a tad dramatic for me to be linking my drop in CD4 straight to death but here are a few things to consider. A dropping or stagnant CD4 count even with proper treatment and care is a sign that HIV has progressed to AIDS. AIDS kills. Also, CD4 does not drop using and arithmetic or geometric progression: what that means is you cannot predict how it will drop. I could be well today and in a week look like those people who you see on TV when they say AIDS kills- it is that fast. My blood tests are done in 6 month intervals no thanks to all the factors I explained previously, and a lot can happen in 6 months. Heaven forbid that instead of being a source of strength for my parents in their old age, I become their burden and they are perpetual caregivers.

Underlying these fears was the nagging memory that I have no source of income and little hope in sight. (Before those who know me take up that matter as their personal matter, read on about what I know for sure about work.) This more than not contributed to my stress ad more frustrating was the notion that many of the things I was doing were not working and this was out of my control. Out of my control! More than 12 years excelling in a field and getting work is out of my control. Numerous months of rifling through books, clothes, in drawers searching for 70 naira to buy a drink for lunch. Or breakfast. Always begging for transport fare to attend one interview or the other, or even to attend clinic. And always seeing a lot of people who started out much later than me, going farther in the life race. The whole thing got to me.
I even went to my parents thinking I could stay there for a while and regain sanity, instead I became more depressed. I got a call for an interview in Lagos a short while after and I happily left with only enough money to get me to the park, stunning my mother who for whatever reason I refused to speak more than a few words to a day. I attended the interview but I did not think it went well, especially as my confidence was shaken by seeing quite a number of my former subordinates in relatively high positions there. It was not that we had bad relationships as a matter of fact we were happy to see each other, but it reminded me of how badly I was doing and created extra (unnecessary) pressure for me to get the position. I did not hear anything from the interviewers and that was how the depression finally set in.

This was the situation I was in before and after I wrote my last post. This is a rather long post so the next one explains where I am now.

LUTH Reloaded (3)

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On my third visit to LUTH I had a very loud fight.

It was a normal Monday, like every other, and as usual I arrived at the center very early: before 6am. I was surprised to find only four people there, normally the people would be in the teens, but I put it down to it being a Monday. People do not want to have to leave their offices on a Monday as that would require a lengthy or detailed explanation.

As I settled into a chair to read my book, I noticed the floor of the waiting area was no longer muddy and had been covered with cobblestones. Also, the zinc shed that offered shade there had been redone. I was happy someone was thinking of making the process more comfortable and less humiliating for the  patients.

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Gradually the crowd built up to maybe fifty, time went and they were ready to begin. The man who was checking our weight had obvious eye problems, and is not actually a trained health professional. In his opinion, you could not get an accurate reading if you stood on the industrial scale with your face towards it. You had to turn your back to it. I obliged him but he read an additional 2 kilograms to my previous weight of a month ago! I knew he was wrong because I had been dieting and other people also wondered why their weight was too high or too low.

After we took our weight it was time to take our blood pressure- the only jobs the nurses actually do. I waited for my turn behind those who, in true Nigerian fashion, had jostled their way to the front of the queue, and behind a young lady who was very sickly, weak very thin, obvious signs that her immune system had been weakened.

Only one nurse sat at the brown wooden office-type desk,beside it, facing the nurse was a white plastic chair. This was where the patients sat , placing their hands on the desk for the cuff that came with the electronic blood pressure meter, and this was what I did. I made a deliberate attempt to greet the nurse a cheerful ‘good morning’ just to ease the somewhat tense atmosphere. She responded and proceeded to place the cuff on my forearm. As she did that she told me to hold the cuff tight. I found that odd but I realized that the Velcro fastener that usually fastened the cuff was worn and useless, so I held it, the cuff unraveled anyway. She hissed and said I was not holding it tight enough. She re-strapped it and tried again. Try as I did, the cuff still unraveled. She raised her voice this time and said I wasn’t holding it well. I explained to her that I had never had to hold the cuff before so she should please show me how to hold it. She strapped me again and told me to hold it tight, I did but it still unraveled. She then said I should leave because she did not have time for this. I asked her politely when I should come back , she screamed at me that she didn’t know. I tried to explain to her that it wasn’t my fault, and I had been here very early so I would not want to waste time deliberately. She screamed that I should not ‘start’ this morning, it was too early’. Then she stood up and sat on the next chair and began attending to others using another blood pressure meter.

When she had attended to about 3 or so patients I reminded her that I was still waiting, she began to scream loudly that I could not be waiting for her, over and over again. (Now, a brief background to this nurse; she is very rude.  If Iknew her name I would have published it. I knew that about her years ago when I first began treatment at the centre; she was one of those people who would shout without provocation and talk down at patients. One time when I made the long journey with my baby from Benin and came a bit late, she was in attendance and started shouting as to why I had come from Benin, I should have taken the treatment there. She kept going on and on and talking loudly deliberately to draw attention but I ignored her. ) Now I did not want to get into any quarrel with her, primarily because I wanted to be angry over important not trivial things, but at this point in time, I had become very upset and I stayed put in the plastic seat.

Luckily for me, the matron was walking past and this girl decided to report me to her. As she was speaking, the other nurse on duty came by. She is nicer so I calmed down, unknown to me though, my doctor friend there had left his desk and stood behind me. When the matron saw him she began to fix the cuff on my arm, the nurse was still spouting crap so I began to shout back at her and everyone tried to calm me down. Finally the matron asked the doctor why he was there and then he told them I was his friend. Immediately the nurse shut up. Obviously she had had a run-in before and she was respecting herself. That gave me latitude to speak and I did. I spoke loudly to the other nurse about how the rude one carried this same attitude for years, how she had no capacity to be nice and she needed spiritual help. The rude nurse said nothing. She had learnt a lesson.

A lot of the time these healthcare attendants in this LUTH treat the patients like dirt, never mind that some of them are infected with the virus. There are several reasons for this; places like LUTH are cost-effective solutions for low-income earners, like I have said in a previous post, so they are hard-pressed to find educated, wealthy patients, coming there-where they go is another story. Another reason is that a lot of these people are holding tight to whatever shreds of dignity they still have left , after being diagnosed with such an humiliating illness. As a result they swallow whatever insults they receive in a bid to get well. I do not fall into any of the categories. I refuse to be ashamed of falling sick; it happens to anyone, and I am educated and informed. So I will not accept it when those idiots throw my card on the floor, or shout at me for no reason or just vent their frustrations on the patients.

After trying unsuccessfully to fix the cuff on me again, the other nurse realised that it was actually too small! So all along, the problem, apart from the worn fastener, was the size. They had to use the manual meter for me with a stethoscope, and that was when I realised that anger really is not good-  my blood pressure had spiked because of that spat with the rude nurse. But sometimes it helps because I was the first person they attended to in that hospital that day.

I was a bit surprised when I spoke to my doctor about how depressed I was about the illness. I will share the reasons for that depression and my fears generally in my next post. He tried to encourage me saying that there was treatment available but also tried to remind me of the power of God to heal. I found that very odd. Not that a healthcare professional was referring to faith healing ,but that he saw it such a serious illness that you should try every means- even unorthodox ones- to get out of.  That notwithstanding, he is a great guy. I think he is really cool.

This brings me to another issue. I have decided to make this blog collaborative. I want contributors who have a personal account of living with HIV or a relative or friend living with HIV. I also want health professionals as well. My doctor has indicated interest in contributing and I am looking forward to it.

 

So let me know.

 

Love, light and Tambourines

 

Joie