I had said I was okay but I was not. There was no day that went without my agonising over what to do about my reducing CD4 count and the dreaded LUTH visit. It didn’t help that I also seemed to be losing weight rapidly without any effort. Previously tight clothes were becoming loose-ish and people were noticing. I met an old school classmate who remarked to me that I was no longer ‘Fat Joie’ at which we all laughed, but inside I knew the truth. Then, shortly after my lips went black, I fell ill again…
It was in this state of ill-health- which I strongly suspected to be malaria that I began a frantic search online for help. The relevance of the fact that I reached out to a man on Facebook who I discovered because he chose to come out of the closet with his sexuality ( he is gay) and his status (he is HIV+), is not lost on me. I could not reach him personally as direct messages to him were unanswered but I followed a link that he had on his page and sent out an SOS to a website with a strange URL. This was on a Friday or Saturday. (I am concealing a few details because I do not have their permission to reveal their information yet. Also, they deal with a very sensitive area of HIV treatment and prevention so I have to be careful.)
The following Monday, about 9-ish, I received a call from a strange number. The caller introduced himself, and then probably daunted by my coldness and no indication of recognition, asked if I had sent a message to them. Then I remembered and relaxed. He wanted to know what made me tick the depressed/suicidal option, so I told him how I had been going to LUTH all these years and suddenly got the dreaded information but was unwilling and afraid to begin treatment with them. He understood, and asked if I wanted a more private, personal place for my treatment? I said ideally I wanted a change in the Nigerian healthcare system but, yes, I craved private treatment (you see how I can misyarn sometimes). After explaining to me the importance of adherence to the drugs in the treatment process he said he would speak to a community health centre that they worked with to see if I could be admitted in and he would call me back. I said a quick prayer and then forgot about it. True to his word, I received an email about 2 hours later with contact details for the hospital, a contact person and his own contact. I could not believe it.
I was supposed to go within that week ( last week) but because I had to gather funds for transportation – and because truth be told I was afraid of being disappointed- I put it off till Friday. I was told by the contact person there, however, to come either on Monday or Thursdays as these were the days when tests could be carried out, so I put it off till Monday this week.
On Monday, I reluctantly woke up really early and headed to the clinic by about 5.45am. I was lucky to find a taxi driver who knew the way to the place so save for the horrible traffic jams caused by fuel queues, we arrived there without incidence. I was uncertain if I had arrived at the right place because this environment was so not what I was used to. At the gate when i asked for the contact, the security guards ushered me in and offered me a seat, apologising that she had not arrived and that I was a bit early. The exterior of the clean, white, three storey-building was paved with interlocking tiles to which care was definitely taken as they were very neat and had no weeds sprouting inbetween them. As I sat I saw a few members of a janitorial service come in and out of the building, obviously performing the chores before the staff arrived. One of the men who welcomed me called the lady I was in contact with and then informed me that she said that I should be processed once the office was open for the day. The man then informed me that there was no electricity so when the janitors were done, they would turn on the generator and I could go in. By then some other people had joined me in the wait. A few minutes later, at about 8am we were told to fill the visitors’ book and then we could go in.
The community health centre is a small clinic tucked in the offices of a multinational NGO that focuses on the health and well-being of specific groups of individuals in society including young girls and women. That is all I can say about that for now. However, its being a multinational explains why the interior was a pristine, modern reception with a television and water cooler. The receptionist processed our details according to how we arrived and gave me the number 2. She then told me to go up the first flight of stairs and wait for the doctor who would attend to me before anyone else. I missed my way and went to the wrong seats so the doctor was having a quick breakfast when I finally located him and I was told to come in in 5 minutes.
The doctor was a very young man, a little too young for my judgmental standards, and he had a bored/distracted look on his face as he listened. This was kind of the same look I had seen on medical staff in public hospitals and for a brief moment I was not sure if I had just jumped from frying pan to fire. He asked why I was there and I told him how I was referred by the people on the phone, how I had been living with HIV for 6/7 years and how I had been attending clinic in LUTH. When I was done he wiped his face with his hands, sighed softly and said there was no problem. He then explained how this clinic was just a small service sponsored by USAID and some other American donors, and as a result it worked in conjunction with a nearby major hospital in the case of emergencies or admission. He said because of funding they too did not offer every service for example they had stopped doing the viral load test as well. He was surprised to find out LUTH had stopped theirs since 2010. He then explained the process I was expected to go through when I was taken in including the counseling and testing, then he said something that made my heart drop; ”you will need to bring a referral letter from LUTH”. Because it was obvious why he would need it I did not ask him why he wanted the referral what I asked was if I could just skip that part and start afresh like a new case. He laughed and said no. He did not think asking for a referral would be a big deal to the folks at LUTH and even if it were he consoled me with the fact that that would be the last time I would have to go there. So, dragging my feet, I unhappily left the clinic.
I knew that as I was going to LUTH on a day 2 months shy of my appointment I would have to go as early as I did for my appointment and go through the process until I was brought to a doctor who would attend to me. I also felt that it was necessary that I saw a doctor who was relatively patient and would not give me problems in drafting the letter. I could not go the next day as Tuesday is specially for children so I went very early on Wednesday.
Despite my arriving early I did not place my card in the queue, instead I chose to wait for the matron, who I knew would be there already, and explain to her, which I did. She took me into the room, very concerned as to why I was leaving and sad too because she had a fondness for me, she wanted to know exactly where I was going down to the address. But after I had explained it to her she said it was for the best but she would miss me. She then took my vitals and got someone to retrieve my file then asked me to sit with the other patients. While we sat outside waiting for the day to begin people came to speak. The first lady, a nurse from another department, spoke about free cervical cancer screening for HIV+ women. The next speakers were our matron and one of our nurses. They were unhappy that it seemed the infection was not diminishing especially in newborns. They said based on all the work they were doing and all the time they were putting in there should be no more children born with the infection or contracting it from their parents, but there were. Parents because of stigmatization would not give the babies the required drugs after birth and to avoid prying eyes they would breastfeed, things which were strictly forbidden. Some spouses were still concealing their status from each other. etc. Then it was time to go in.
Luckily for me, and thanks to the matron, my case note was placed on the desk of the doctor who I saw previously. She was the most civil one. As I waited my turn to see her, the amn in another queue got up to see his doctor and I heard her say very loudly, before he even sat down’ do you have your money for your test today’. His response was inaudible and because he was so close to where I was sitting I knew he did not speak up because he did not have the money. Then it was my turn to see the doctor.
What is your name? She asked without looking up. I told her. She raised her head and looked at me with a slight smile, and asked so are you ready for your drugs now. I smiled and just as I was about to say yes, she said you are not. I said I was but I wanted a referral. She was shocked and asked why. Then it seemed as if she caught herself , she shrugged and reached for the referral paper. Then she asked again why I wanted to leave. I asked her if I could speak freely, she said I could. I explained to her that after my last visit I had cause to think about a lot of things and that I realised that LUTH was a deterrent to my adherence to a treatment regime. Why she asked. I don’t like being here, I dread coming here. You are the most patient doctor here but if you are not here then I just take any treatment I see. I told her I needed personal care. She nodded in understanding saying she had been telling her doctors to be more attentive but she could only do so much. As she spoke I wondered how anyone could wonder why someone would want to leave the centre. She then filled out a form and gave it to me with instructions to make a photocopy and bring it back to her.
I had to walk quite a distance to get to commercial photocopy centre. By the time I came back she was attending to a very sick patient.She told me to sign on the photocopy that I had received the original and give it to her. I had to sign this at the desk of one of the nice nurses. ‘ You’re leaving us?’, she asked. I said I was. After explaining why and where I was going to she said she was going to miss me because she was always looking out for me, their patient with swagg. She said she like the way I dressed and the way I spoke. I was amazed that people actually noticed me.
After dropping the copy of the letter, I said my goodbyes, took personal details and just like that I was out of LUTH treatment centre.
(to be continued)
Congratulations !!!! this is great news. LUTH will definitely not be missed, good riddance.
“Patient with swagg” lol that made me laugh 🙂
I’m glad you had a breakthrough dear. More blessings await you!
This is such awesome news, and here’s to better treatment and care for you..all the best!
Oh my gosh its been a while since i read your blog cos i thought you stopped blogging. I won’t lie I felt a little anxiety as you typed the last line about being out of the LUTH system. I really hope the community health center comes through for you. Keep trooping on soldier!
Neuyogi (formerly MPB)
Thank God for his mercies, thank God you will be getting personalised treatment