Life can be unbearable especially when you are suffering from an illness that the society does not have an understanding over, and more painful, especially if one does not feel loved or appreciated. STIGMA is a word that I only read in books and listened from radios it had never crossed my mind that one day I would be a victim. This is where life begun for me. As people living with sickle cell anemia, all I have know is pain pain, pain and pain, the unbearable pain. I was born to a family who knew nothing about the condition and daily hospitalization was the order the day.
By the time I thought I understood myself was the moment I joined high school. Life here was difficult, I would frequently miss classes because of frequent attacks, even exams and when grading came, I didn’t make good grades and that is where my miserable life began. My teachers said I was pretending and that I feared exams my. Life was tough and my dad who used to stand by me had passed on some months earlier. I faced discrimination from the people I thought understood my condition. Some people were pointing fingers at me saying that I didn’t want to go to school. When I started developing pains on my knees I couldn’t seat in class for more than 20 minutes, if I went beyond, standing up was going to be difficult. So I resorted to moving out of class and taking walks and most of the time I would be found by the teacher on duty and that would mean punishment. With teachers blaming me for not performing and fellow class mates making fun of me, I went to depression I was always talking to myself and I voided Peoples Company. By this time my knee joint were swelling that I couldn’t walk and by the time my family was noticing it was late. I had to be taken to the hospital after being admitted, various tests were run that’s when I could hear doctors discussing that I had heart failure, septic arthritis, severe aneamia and Malaria. I needed blood transfusion this was my first time being transfused at the age where I couldn’t understand what was happening around me. Before this blood was released from the blood bank, we had to go through a lot. The doctors said only blood could save me and I needed emergency transfusion. As I was waiting, report from blood bank showed that there was no blood and I had to look for donors so, my mother had to make arrangements to transport 3 of my brothers to the hospital to come and donate and after they had donated, I still had to wait for some tests to be done on the said blood it was a long process yet I was passing through a lot of pain and I kept wondering when it will end.. The following evening, as I watched somebody’s blood ran through my veins, at first I was very scared because in the past I heard people die of being given somebody’s else blood and that I would acquire the behavior like witchcraft, madness and any other bad one that existed in the donors lineage. I watched with fear and I remember I kept whispering, “God don’t let me die, God don’t let me die” and with that fear I slowly drifted to sleep and when I woke up the following morning, Alas! I was still alive just then, I realized the blood was important, this saved my life because I was feeling better.
Before I could even recover completely from the last admission, here again I started developing bad wounds around my leg ankles and I didn’t understand where they came from or even why I had them. I had no idea what the wounds were all about I never bothered to go to hospital because I thought maybe they will heal but they kept worsening until one morning after taking a shower that I removed the dark skin on the spot only to realize I had developed a very big wound. When I went to the local health centre nobody really could explain to me what it was. It was very painful I cried most of the time, I didn’t know the remedy or even how to care for it. The most challenging season in my life. Most people walked out of my life especially the people I thought loved me. My own so called boy friend walked out because I had a wound that couldn’t heal. In fact they said I had a wound that makes them stop eating meat as a meal. I resorted to locking myself in the house, oh! I suffered loneliness; I wouldn’t leave the house no matter how much I wanted to leave. Then one day, a Catholic nun who came to visit advised me to attend one of their hospital visits and when I went the following day, the doctor I found there recommended blood transfusion and this time I wasn’t so scared and the moment they finished giving the 3 pints of blood, the wound I had for 2 years healed in 2 weeks. I became so curious. I begun to ask questions about the wounds and what causes them, that’s how I came to know about the leg ulcerations on people living with the sickle cell disease. After that experience, all the leg ulcers that came later in life, I managed and most of the time I did dressing myself, even the one i have currently is doing so well because the doctor taught me about wound management. These wounds becomes easier to manage once you’ve understood yourself and living with it positively always makes life a lot more easier.
Having this sickle cell disease is really tough. Most cases you never know when the next crisis would attack and the financial strain is a menace. And being in the rural part of my county access to the hospital is also a challenge let alone the complication that sometimes arises because of this condition. This time, I had painful chest pain I went to a local hospital but they gave me painkillers which were not responding and they could not also put me on fluids, they couldn’t find my veins so the entire night I writhe in pain until the following morning. I requested to be transferred to another hospital. By the time I arrived, I already had the worst pain, acute chest syndrome, is what the doctor said I had. They tried managing it but the pain could not go away and on the third day, a Doctor was contacted via mobile phone.He said blood transfusion would help minimize the pain, the doctor quickly instructed the nurse on duty to do the blood follow up. The moment the first pint of blood was put and it started going through I became hopeful that I would feel better the chest pain had completely gone and soon the following three days I was given the remaining one pint.
Few months that followed I kept going pale.With no particular pain in the body and every time I went for hemoglobin test it kept going down. Then one fateful morning, I woke up but I could not leave the bed I was too weak, I called a friend by then I was staying alone. She insisted we had to find our way to the hospital immediately. I could barely sit by myself and the doctors did the Full Blood Count and the said my hemoglobin was going down very fast and they had not known the reason. Just then, the doctor order for blood transfusion and I was transfused twice but still my heamoglobin refused to pick up instead it went down I could see the fears in people’s faces from a hemoglobin of 7, to 6 to 5, to 4, to 3 in a spun of 3 day.I had to act very fast, and I requested for a discharge I never wanted referral I knew it would be along procedure being a small hospital. Though the doctor was adamant, he still discharged me and I went straight ahead to the bus station, I had to reach Kisumu and within three hours of long ride I was in the city I had to look for a doctor and luckily, I found a consultant physician and the moment he saw me and after explaining myself, he told me I had something called a plastic crisis and I needed packed cells as soon as possible, and he went further to explain that being a holiday, it was difficult to get blood for transfusion, I kept thinking what was to come over me, then 2 days later my Blood Count had reached 2.8 and I could see the desperation on faces of the family and everyone who came visiting and the only advice I got was to eat food reach in Iron, and my folate dose was increased to 2 as I wait for the blood to be found and my learned friends kept saying how my internal organs are getting destroyed I was worried lucky that evening, the physician asked if I could get donors and there I was, on the social network and my 7:00am the following morning, I had 8 donors. The hustle had not ended it had to take another 2 days for me to start getting the blood, I felt the hospital had become slow on everything and anytime they were asked about the donated blood they would keep quite. On the second day I had a visitor one of my cousins came to visit and being a strict person she started making scene in hospital and asking whether it was the money they wanted before giving the blood that my friends donated or were they waiting for the worst or to give someone else and with that tension, I saw the nurses bringing the blood. And soon after that, they started transfusing me, and the following 4 days I was given the 4 pint of packed cells I needed. And I began to recover and soon after, I left the hospital a happy person but with an expensive experience. And once again, the blood saved my life. Life of a sickle child is always threaten especially where the hospital has no facilities like the first hospital I went and ignorance clearly makes us suffer one could be weak thinking that may be its normal not knowing something big in going on inside. How I wish we could have sickle centers in all our counties, proper medical attention for this group of person, better staffs who understand the sickle cell disease I have experience where the medical staff you find their on that day throws away your clinic book that they are tired of handling that case and even, in some cases, they ask what to be done in such cases of painful crisis its heart wrecking, and working blood banks in every county.
Friend came to donate blood
The day had a plastic crisis and was waiting for transfusion.
At the hospital for leg ulceration