Sunday 22 September 2019

A decade from AIDS to life and living

A day of thanks
Today marks an anniversary, a celebration of life in thankfulness and gratitude, quite a miracle too, but I cannot be any less grateful.
As the church service ended, we are asked if we have a point of prayer, we could visit a chapel to be prayed for. My prayer point was one of thanks, I told the priest that 10 years ago today I was admitted in hospital with full-blown AIDS and just a week later, I was told I only had 5 weeks to live if my physiology could not tolerate the medicine.
The week before my admission, I had visited my doctor with an unbearably painful weeping sore on the sole of my foot, it had started as what I thought was a fungal infection, probably Athlete’s foot in the summer, but it didn’t seem to go away.
My foolish pride
Meanwhile, I was praying and hoping that I might just get a miracle cure, I had gone to London the week before because one of the faith healing preachers that I had grown up with, in a fraught and challenging Pentecostal, Evangelical and Word-of-faith suffused environment was visiting. I was there expecting Jerry Savelle to lay hands on me and suddenly I will be made whole.
I battled with the wisdom and foolishness of my situation, hinting to my friend at one time that he must think I am mad to endure so much pain and not seek essential medical attention. I was looking for a quick-fix to a situation I paid little heed to until it was impossible to ignore it.
By the time I saw my doctor on the 15th of September 2009, she was in no doubt that the condition I was in was serious. She plied me with painkillers and immediately scheduled a referral to a specialist hospital, the day after.
In the truth of my pain
At the hospital, they booked an appointment for me to attend the internal medicine department at the earliest possible time, that was 4 days away including the intervening weekend.
When I arrived at the hospital, the pain could only be eased with my foot up, whilst I was not yet in delirium, there were times I just cried out of utter anguish. I was in a wheelchair when the professor arrived to have a look at me. He said, under no circumstances could I return home, I looked too ill. In the next sentence, he said, “We have a bed for you upstairs.”
That began the first day of the 18 nights I eventually spent in the hospital. A battery of tests with processes of elimination followed, more importantly, they needed to be sure my condition was not a complication of diabetes, after which blood tests and a biopsy determined exactly what I had.
AIDS-defining cancer
On the sole of the left foot was advanced Kaposi's Sarcoma, a kind of skin cancer redolent of advanced AIDS complications, but also common to West Africans, mine was AIDS-defining. They could treat it with liposomal doxorubicin with the brand name Caelyx, a chemotherapy drug as long as I could tolerate it.
At the same time, I was put on antiretroviral drugs, the morphine painkillers had to be changed because after two days, I could keep nothing down, I had to tolerate the pain more than was necessary, but I was already on the mend.
On the blood test results, my HIV viral load was astronomically high, my CD4 count was at a nadir of 20, whatever was keeping me alive was beyond medical explanation but my consultant believed if I responded well to the concoction of treatments, I will survive this life-threatening situation.
And after this?
We had no discussion of life expectancy after this dire situation, but I had read a study that at my CD4 count before commencing treatment, rarely had people lived up to 10 years. That thought lingered in my subconscious as I realised and understood that I was beginning a new life after cancer.
And so today marks the day that I became an exception to the study, not so much one of my triumphs, yet, the marvel of modern medicine is revealed my body and the state of my health. Beyond it, I have lived an enchanted life, full of thanks and better attention to understanding my health, my options, adherent to advice and where I have had doubts, challenged the accepted premise. It is my body first before it is anyone’s guinea pig.
Giving thanks
I have medicine to thank, Prof Dr Kees Brinkman is exemplary and exceptional, with other consultants, nurses and medical personnel who have contributed their expertise towards my having this day worthy of note, I will soon visit to thank again.
My friends who stood with me through the toughest times of my life, I can neither thank nor repay enough, Kola, Ola, John (deceased), Sola, Kayode, Peter, Steve, Marc, the de Wolf family, the Kiran family, my C3 family in Amsterdam. Then many other people have in my frailty and my limited ability given opportunity, access, and chances to rebuild my career.
Then, I have a man who has put one of the widest smiles on my face, happiness in my life and joy in my heart, Brian. I am fortunate and thankful; I am probably one of the luckiest persons on earth today.

One final note is to stress the need for regular testing, early diagnosis, getting involved in reviewing options for treatment, the immediate use of therapies and an understanding of the prognosis, the condition, and the prospects you have. Medicine offers the best outcomes for HIV/AIDS situations, and where other remedies intervene, their efficacy must always be tested and verified against medical results under supervision of a consultant. Only let medicine be the ultimate arbiter of any claim of a cure.

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