I was born in 2004 in Kumi District in Eastern Uganda. Am living with sickle cell disease which is a painful disease to be with everyday. I would not even wish it to see my enemy living with this disease.
I am not the first person to be born with sickle cell disease in my family. My elder brother was born in 1996 and was later diagnosed with the disease at the age of six months. He passed on in 1998 at the age of 2 years. I was born 6 years after the death of my brother from sickle cell complications mainly lack of blood in the hospital.
When my elder brother made a year he made frequent visits with my parents due to pain. Most often when attacked by malaria and when tested for hemoglobin could get low counts. With this my brother was always subjected to transfusions. He realized marked improvement which gave him on going hope.
However later on, after short discovery about 2 years he died this was attributed to delayed discovery that he had gotten anaemia and was never transfused.
At six months I started to present similar signs and symptoms which my brother had. I was a crying baby with no major reason. My hands and feet were getting swollen and too painful even to touch. My body used to be pale. My father narrated to me that he used to be worried that I was going to die like my brother. Some people used to tell him that I was going to die at 2 years as my brother through am now 12 years, 10 years older than what was predicted to be my end of life. At first my parents used to hide me whenever I got sick and never told people in our village.
At 6 years I started school but I was the smallest in the whole class and my classmates used to laugh at me whenever I said my age. They used to say that I was lying and could not be 6 years. Many of them were younger than me but I was smaller than them.
Growing up with sickle cell disease has not been a walk in the park. It is challenging, I get pain in the joints and bones, hands and waist. The worst pain is the chest pain which brings difficulty in breathing. My pain is relieved when I drink water, take my medications and massaging with warm cloth.
The most disturbing pain in my life is the pain that makes me have my blood levels drop. I have been transfused with blood several times following the lowering of the hb. I can’t even tell how many times I have been transfused with blood.
Some transfusion days are difficult. Sometimes blood is readily available and others it’s difficult to get blood from hospital. Some times when the hb is low and not too low and blood is not available in the hospital am sent home and use other boosters to boost blood.
In April this year I had seen a change in my eye colour to dark yellow, my finger and toe nails had become pale. I insisted on going to school on Monday though I was feeling pain in my chest. My mother had told me to stay home and rest but I refused.
I came back from school too exhausted and the pain levels were now up. My mother gave me painkillers and I slept. She told me that we wait until the next day which was a Tuesday the sickle cell clinic day for our hospital at Atutur.
In the morning we set off to the clinic. I was now feeling too much pain. My father rode me with my mother on his bicycle for a distance of 7 kilometers. It was a painful journey.
We sat under the tree where we always wait the doctor from. Each minute that past the pain was increasing. I was now feeling like someone piercing me with a hot knife in my chest and other bones.
The doctor came and wrote for us a lab request to do some tests. We went to the lab and the lady in the lab took some blood from my hand. We went back and waited for the results, I was now crying because of pain.
Results came back after an hour. The doctor told us to go to the ward and I get two units of blood.
In the ward the nurse came, checked my papers. She again requested to take some blood and do some tests again. My mother told the nurse that they had tested me already, the nurse explained that the first test was for hb levels and this one was going to do was to find out my blood group.
She later returned and told us that the blood I needed to be transfused with was not available. We were told that the only option was to wait for the blood from the blood bank in Mbale more than 5o kilometers away and it was going to take some hours to arrive if it was actually there. I was now in too much pain. The nurse injected me with a painkiller that made me sleep.
I woke up to seeing a doctor and two nurse holding my foot trying to look for a vein to connect blood. They had pricked both my hands but had failed to get a vein. I pleaded with them to stop but my mother told me to let them get the vein and blood was going to take away pain. Everybody had failed to get the vein. The doctor had suggested that the put a cannular on my neck vein. It took the operating theater doctor to come and prick to get the vein and finally blood was connected.
Drops of blood started to flow in a transparent tube to my dark veins. My eyes were up waiting for what was going to happen next. I now felt blood entering the blood vessels which was almost dry. It was like rain after a long dry season.
The unit was halfway, the pain had reduced, I then fell asleep. I only woke up when they had connected the second one and the pain levels had gone down.
By Wednesday morning I was left with little pain after transfusion. I was discharged from hospital and went back home.
Am grateful to people who donate blood. If it was not the blood that I received I think I would not be alive now.