MY BLOOD STORY (SICKLE CELL BLOOD STORY)
My name is Akoth Patience Marion, a 23 year old sickle cell patient from Uganda. I was diagnosed with sickle cell disease at age of 8 when doctor got concerned that I was frequently falling ill without particular cause.
My mother refused to acknowledge it since none of my elder siblings had the disease or even showed signs of it. She also added that growing up, she had not seen any of her relatives, both close and distant, suffering from such a terrible disease.
To be fair to her, the doctor decided to check her genotype and it came out as AS.
The next step was to blame it on my dad, since I didn’t know him; I was raised by my mother single handedly.
At that time, my mothers denial made her turn deaf ears to the doctors talks about care and precautions needed for sickle cell care. Her denial continued until I was 16 and had life-changing crisis.
During that time when my mother was in denial, I would often fall sick but what saved me was the medical insurance we had at that particular clinic where my condition was diagnosed, so whenever I was taken there, the doctor knew what to treat and I never needed transfusion. The doctor would teach me about how to care for myself, including the do’s and don’ts of sickle cell disease.
This went on until I was about 13 years when my mother retired and we had to move to another town. At that point our medical insurance had expired and I was now at the mercy of random doctors, most of whom knew very little about sickle cell care.
That’s when my dilema started.
The Big Crisis
A few weeks after I turned 16 years old, I suffered a life changing crisis.
On 12/06/2009, I visited the doctor because I was in pain. I was diagnosed with mild malaria, so there was no need for admission according to the doctor. My Hb level was 9.0 g/dl. I was treated out patient.
Five days later, on 17/06/2009, I woke up in severe pain because I had not yet recovered fully from malaria. My mother rushed me to the clinic and this time I was admitted and given severe pain medication. That morning my Hb was 8.7 g/dl. By 1:45pm, my Hb had dropped to 6.9 g/dl. The doctor said it was probably nothing serious, but just the malaria.
The next morning, 18/06/20098, my Hb had further dropped to 5.8 g/dl. At that point, the doctor recommended that I be referred to the general hospital for a blood transfusion.
I was so weak, so he told my mother to go to the general hospital and check if they had blood so that the transfusion could be done from the clinic instead of moving me.
On reaching the general hospital, my mother was told that last few units of blood had just been given to some accident victims and a mother in labour, so they were out of blood.
On hearing this, the doctor recommended that I be referred to the regional hospital which was in the next district and about two hours drive away due to the terrible roads at that time. The doctor then warned my mother that since I was too weak, this would be great risk to take and I would most probably die before reaching the hospital due to the rugged roads at that time. He also told her that she had a choice of taking me home and rendering palliative care instead.
At that moment my mother was in a big dilemma, wondering whether to take the risk and take me for a blood transfusion, or take me home and await my death.
Well, since at that time my mother and I knew so little about sickle cell disease and it’s complications, she decided to reject the blood transfusion and take me home instead she did not believe that a blood transfusion could save my life.
I stayed home, surviving on pain medication, millet porridge and herbal teas. Two days later, on 20/06/2009, I woke up with sharp pain in my abdomen, knees and backbone, and all my joints felt like they were about to take me back to the clinic. There was a private hospital within our neighbourhood, so she took me there instead. The doctor there assessed me afresh and carried out tests that showed that I had anaemia my Hb was still at 5-8 g/dl. The doctor told my mother that I needed a blood transfusion immediately. Unlucky for me, that hospitals blood bank was also empty and their blood was out of stock, so they referred me to the regional referral hospital.
On hearing this, my mother requested for the rest of the treatment and took me back home. I stayed home, only taking millet porridge, pain medication and herbal teas. During those days, all my mother did was pray, and God was merciful to me. After two weeks, I started gaining my strength back and I returned to school.
Five months later, in November 2009, I started feeling pain in my hip while walking.
I consulted the doctor, who gave me anti-inflammatory drugs and I got some relief. At the beginning of January, the pain in my hip became worse, so my mother took me to consult an orthopaedic surgeon.
The surgeon listened to me and told us his suspicions, but requested for X-rays of my pelvis and a few other tests to be done. When the results were out, the surgeon questioned my mother. He asked her if I had sickle cell disease and she answered no, but I said yes. The surgeon requested for the electrophoresis test and the result was SS.
Knowing all the results, the surgeon explained to my mother and I had developed bilateral avascular necrosis of the femur due to a poorly managed crisis. He mentioned that according to the X-ray, the necrosis started about 6 months ago and that was exactly when I had the big crisis.
He went on to explain that it was caused by cut-off blood supply from the femur heads. He also added that at that stage, the damage was permanent and I had to use crutches to reduce the weight off the affected area and that I would have to go through a hip replacement surgery once the bones were fully developed.
At that point, my mother apologized to me for not taking time to learn about sickle cell disease and the importance of a blood transfusion when needed. I believe if I had received that transfusion that day, many things in my life would be different. I now live with AVN, but it pushed me to learn more about sickle cell disease, and most importantly, the need for blood transfusion in sickle cell patients. My mother understands more now and supports me very much.
I encouraged parents and caretakers out to support blood transfusion in their patients with sickle cell disease. They should not view blood transfusion as an evil deed; but a life – saving act that also prevents many other complications of sickle cell.
I also urge the general public to support sickle cell patients by donating blood as much as they can. I f the general and private hospitals in my district have accepted the transfusion. So please support a SC warrior by donating blood.