I keep repeating that the way sickle cell affects everyone is different and not worth comparing any two people.  Kindly read Mark's life journey with sickle cell below.

Like most people living with sickle cell disease, I was diagnosed early at eight months. My mum told me my diagnosis was precipitated by diarrhoea with swollen hands and feet which made the doctor think I might be suffering from sickle  cell disease and he requested for a genotype test. It came out positive.

 Most of my pain episodes were mild growing up as my mum took good care of managing the crises. But she passed on sometime in 2003 when I secured admission into the university and was away from home. Things changed rapidly and I had my first serious crisis when I had a badly managed malaria fever leading to my first hospitalisation.  I had my first transfusion as test results showed I was on 9 per cent packed cell volume.

I developed avascular necrosis in my sleep after having my usual siesta sometime in late August 2005 and this saw my introduction to pain killer usage and subsequent addiction.

I saw an orthopedic doctor in Kaduna who put me on Ibuprofen tablets to cushion the severe pains I was having. The pain medications worked like magic but the pains always returned with vengeance when the effects of the medication slowed down.

After, I saw another orthopedic doctor in Bauchi who wrote that an x-ray test be done to rightly ascertain what was happening with my leg.  By this time, I was limping. When the X-ray results came out, the doctor lifted it up to the sky while looking at it, and I heard the doctor murmured, "Poor boy has got AVN of the hip." On probing, he explained the femoral head of left hip had collapsed and I might have to have a surgical operation to correct it.  He put me on diclofenac tablets to ameliorate the pains.

I began popping pain pills to keep up with my studies in school and other times, I was self-injecting pentazocine injections, to keep up with my studies but my condition grew worse. I contemplated quitting school but for some good friends who took it upon themselves to support me by hiring a motorcycle to take me to and from classes.  My grades nose-dived but I managed to complete university education.

I served and got a job almost immediately but couldn't cope because the stress of the job was much. With the job loss, I went into depression and I began to binge drink alcohol.

On a particular day, I was coming home from an induction and I ran into a police friend from the barracks where I was living with an uncle and he took me to the pub.  I drank so much alcohol that my blood oxygen depleted and I passed out. I was in a coma for three days and woke up in a hospital bed, vowing not to taste alcohol again.  I lied to myself as I was soon back on it. Well, up until I got diagnosed with sickle cell nephropathy (chronic kidney disease).

Sometime in 2015, I got another job and was transferred to Lagos from Abuja where the job was based. The stress of the job plus my incessant usage of pain tablets saw me developing high blood pressure. This was badly managed as I wasn't told to continue taking blood pressure pills after the hospital admission where it was discovered.

Later I was diagnosed with sickle cell nephropathy. This is another complication of sickle cell that I still manage till date. I'm currently in stage 4 kidney disease and on medications but some of these medicines are too expensive.

Seeing that I developed chronic kidney disease, I knew I had to do away with the pain pills or else it would be disastrous on the already compromised kidney.

I decided to approach the organisation I was working at and fortunately, they reasoned with me, took pity on me and sponsored me for the operation in India.

With the AVN out of the way and the limping as a result of the surgery corrected to the minimum, I'm reasonably good except that I am still currently in stage 4 kidney disease.  I have remained unmarried, even though I have a caring and compatible partner genotype-wise, because I have remained skeptical on taking the serious decisions of getting married for fears of having to spend a lot in management of my failing health and fears adding the burden of marriage to my already huge task of managing myself.  I am on a lot of management medications and some of these medications are too expensive.

For instance, I'm on erythropoietin which costs between 10,000 and N13,000  a dose in pharmacies and must be taken four times a week. I'm also on deferasirox tablets for iron chelator which cost between 48,000 and N60,000 per pack. I use Erythropoietin injections as substitute for my kidneys, which are unable to produce this hormone naturally as it used to and hydroxyurea to reduce the rate of my hemolysis and boost fetal hemoglobin. I use deferasirox asunra to remove high iron from my body to avoid more complications.  Failure to take these medicines could see me deteriorate rapidly and doctors might have to ask me to consider dialysis as my creatinine keeps shooting with every clinical test.

 I presently see my doctor's (nephrologist and hematologist) every month and I realised I needed to share my story so that the few percentage of sickle cell patients who suffer from these complications (I've met few) will know that they're not alone.

For a country with the highest rate of sufferers worldwide, the Nigeria government needs to take our health challenges seriously and come to the aid of patients by subsidising the tablets, treatments, and surgeries patients have to go through in life.

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