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Monday, July 16, 2012

THE LIVING ONE (A'ISHA)



 Thursday 16th July, 2009.


I had reported to 68 NARH, Yaba, as usual for my every-other-week-lying-in-bed-ceremony. Being 37 weeks pregnant, for the first time as a sickle cell patient was all but a pleasurable experience. From week one of my pregnancy and the hospital became my extended family, from the ER to surgery to O.B.G.Y.N to hematology. So far, I had survived every attack sickle cell had to offer, from the lowest blood level (Packed Cell Volume) 7%, to the deadliest of pains in every blood flowing organ, to transfusion of over 30 pints of blood. You haven’t read the worst part; I couldn’t have sex with my husband (whom I call Imam). It hurt really badly, but you know what, I showed sickle cell who is BOSS!!! Yes, I demanded my right! So, anyway, not going into details, being boss doesn’t mean you are always right in your decision. It can backfire in lots of funny ways……


By 1100 Hrs, Nigerian time, I was having the feeling that my baby’s head was going to drop my cervix; it was the heaviest feeling ever. Panic stricken, Imam called my doctor telling him what I was feeling exactly how I was managing to cry the words out. Finally, the doctor just advised him to take me to the MRS for immediate attention then we move to the hospital. The distance from Ojo to Yaba in Lagos, Nigeria is no joke, not considering it being a working day; heavy traffic. So we went to the MRS first, the matron injected me, paracetamol and novalgin, if I can recall properly and she gave me some pink drugs don’t even recall the name (my doctor friend says it’s salbutamol, used to treat premature contractions). That drug made me experience how it is to have Parkinson’s disease. I was shaking involuntarily, even my squeaky voice was shaky; Imam performed a real miracle, we got to Yaba in less than the normal time, LOL!


 Well, on getting there, of course my folder was never returned to the filing room, that would just be a waste of everything! I was quickly seen by my consulting obstetrician. After all the touching and looking, he prescribed a scan. I had a 3D scan, saw my daughter; she was the cutest fetus ever, with her head resting on her tiny hands as if she was thinking (I’m smiling just remembering it). The doctor kept asking if we were sure I was in my 37th week, and we kept on saying yes. By and by, he typed out the result and wished us well. On returning to the hospital, oh yeh, I forgot to mention, we went for the scan outside the reference hospital. Anyways, by the time we got back, I wanted to sleep, I was tired. So, Imam took the result to the doctor and I went to my bed I was just thinking of the roasted corn and coconut that I had to leave in a hurry *wink*.


The look on his face when he returned made me drop the coconut with utmost speed. He just said to me “You have IUGR (intrauterine growth restriction); the baby is showing 29 weeks”. Then he came near me smiled and said “toh, the surgery is tomorrow”. I had general body crises, I had to be sure he said what I thought I heard, so I asked “Tomorrow? Tomorrow, Friday?” he said “Yes. Tomorrow, Friday. I have to go and arrange for three pints of blood for you.” “Okay, Allah bada sa’a” was all I could say to him. The nurses on duty all came trying to cheer me up and make me laugh. Telling me not to worry, I had the best obstetrician/surgeon and I would be just fine. I finally smiled, it’s hard not to when people have taken the pain to make sure you do! I calmed myself; the worst that could happen was death! I guess I’m ready, but what of my girl? I change my mind Ya Allah, I am not ready, but I put my trust in YOU. These were among the thoughts going through my head. Corn and coconut forgotten.


I was to have my hair neatly styled, all jewelries removed, pubic region cleaned, and no meals or drinks after 2000hrs. I just smiled, not eating was not going to be a problem, my appetite had gone with the news. But much later that night, I wanted to eat amala and ewedu. I settled for rice o my people, woman must eat, had to keep my strength. Night came too quickly and visiting hours was over, men weren’t allowed to stay overnight (they made exceptions for me because I was a regular). Did I sleep? Was I awake? I have no idea, but morning came quickly.


Friday 17 July, 2009.

It’s all over; time to profess my undying love and what I want to be done to my girl if anything went wrong in the OR. But Imam wouldn’t hear of any “faithless talks” “Toh, oga sir, but I’m scared” I told him, and he replied smiling warmly, “I know, I’m also apprehensive, just keep reciting ayatul Kursiyu for as long as you are awake” and he kissed my fore head. After that, we were just silent, I was to go in by 0900hrs but another lady had some complications so I was asked to wait a little while. She finally came out and it was my turn to go in. Imam had agreed with the surgeon that he would go in with me, love-wan-tin-tin, but just as we were going in, he gave a terrifying sneeze!!! No, OMG!!! (He was banned from going in for risk of contamination) I was so sad, I nearly cried, but it was all for the best. He gave me a last pregnancy hug saying, “Allah ma’aki” meaning, may Allah be with you. So I walked with one of the theatre persons into the OR, laid on the OT. The female doctors were teasing me as a catheter was being fixed and cannulas were being set, then the anesthetician injected me with a series of pain killers supposed to make me drowsy, but I had immunity by then, I was chatting away merrily, and he was really surprised. He just shook his head and brought out the gas mask asking me something  of which I have no idea……..


The Very First Day I Set Eyes On A'isha

Tuesday, July 10, 2012

SICKLE CELL WARRIOR - MUHAMMAD NURA ABDULLAHI

Growing up with Sickle Cell Anaemia in me was the greatest challenge ever. Sometimes it made me feel like life has no meaning. You have a lot of rules to abide by; so all the things I loved doing as a kid I couldn't do. I had to stop playing football, which I liked, completely.
I couldn't party freely without anticipating crisis and I love my parties *wink*. If you go against these rules knowingly or unknowingly  then the bone pain (crises) comes to take life out of you. When the pains take over the control of my body, I wish I have someone to talk to me. Not necessarily give me advice but to speak continuously as I listen and feel their presence. This routine helps me a lot because the pains are so persistent and excruciating that I sometimes forget the essence of my existence.
I experience extreme pain in my bones and joints. I get fever and I sometimes have  to deal with other complications, in one sickle cell  attack.
When I am in a crisis, the pain is usually so severe that no medication is strong enough to make me stop hurting completely. The pain sometimes takes away my physical ability, makes me unable to walk with my legs and sometimes I can't even carry something as light as a plastic cup.
In such situations, I blaspheme, *sad chuckle*, but I ask God for forgiveness when I realise my wrong.Most times I look at my folks, tears in their eyes with no hope but pity for me, thinking that moment of inestimable and seemingly insurmountable pain might probably be my last on earth. Some of my friends even wish they could take some of the physical pain and share with me.
My parents played a strong role in helping me have a normal and healthy life. They gave me hope, helped me through the pains, cried when I cried, smiled when I smiled. I lost some friends over the years, some over a decade ago, and every time I'm being rushed into the emergency ward, I always feel that my time to join them has come but here I am, still in the struggle, still alive. But death has become no scare to me, because I have seen many of my type succumb to it.
Lately, having Sickle Cell doesn't really bother me only when I am in serious pains. The truth is I always look at Sickle Cell as my gift and my curse. I became an advocate when I was about 11 years old, from advocating for Child's Right to HIV and AIDS to Youthful Media and even Global Peace and Unity. I decided to do all these because of the challenges posed to me by Sickle Cell Anaemia, to prove to the world that my type can still do extra-ordinary things if they wish to and nothing can stop them. No! Not even the UN-imaginable pain.

Muhammad Nura Abdullahi

Tuesday, July 3, 2012

REMEMBERING SICKLE CELL - FATIMA UMAR(6 YEAR OLD)


I think it’s about time I wrote about one of the unique things The Lord has bestowed upon me since birth; sickle cell anemia. I have had it in mind for a long time but each time I try to write something I get stuck right at the start. It is a bit complicated to write about something that I feel I know nearly so much about. But I have to start somewhere. So, here goes….

The very first crisis (pains in joint, back or chest) I can remember ever experiencing was when I was six years old (I may have had before that, I don’t really know). I had gone in for my evening bath and decided to fill up a brown plastic basin with water to “swim” in it, LOL!

As it so happened, I over stayed in the water with my navel downwards immersed comfortably in the water basin. I might have been in there the whole night if I hadn’t started feeling some very uncomfortable sensations in my back. I came out of the water, my fingers and toes all shrunken, wrinkled and ‘whitish’. I dried myself, rubbed baby oil and put on my night gown. That ‘pain’ was still not subsiding; in fact it seemed to be ‘beating’ faster and harder. OMG, what is this? What is happening? I was asking myself, I was so restless, I was scared to tell my mommy and besides she had a guest.

But bless her heart, she noticed something ‘abnormal’ about my behavior; I wasn’t sitting down quietly and I was whining with every breath I exhaled. She asked what was wrong and (as usual) my tears poured out, “mommy my back, it is paining me”. She said “You stayed in the water too long, I kept on calling your name but you didn’t answer me” then her guest suggested we rub a hot balm on my back. We didn’t have any at home, but thank God she did. She was also our neighbor. By now I was already flooding the house with tears….

The kind lady went home and came back really quick, but it seemed like a whole hour passed to me! The balm was massaged onto my back; boy was that the hottest thing on earth or what?! And the smell of that thing, urgh! It helped clear my eyes for more tears, I was a lucky kid! Well, after they had rubbed it on, I put down my gown and then a piece of cloth was tied around my waist for extra warmth. I don’t know if I was given any analgesic. I don’t remember because I took analgesic almost daily, I had headaches day-in, day-out. The pains I went through as a child, I do not wish it for any child EVER.
At this point, I would really like to explain to best of my ability how a person suffering from sickle cell crisis feels. This is an emotional write-up…forgive the smudges J The pains in the joints differ from that of the back and chest. Oh, don’t get me wrong, they are both just as bad! Any ways, as a kid, my chest and back were usually the target of the crises! (I really want to know why!?).

The back pain would start as a very slight tremor, making me straighten up involuntarily. It continues to pulsate, as if getting force from some unforeseen source, and then BAM! I’m hot because I break into bouts of sweat and if the fan or air condition is turned on, the pain increases geometrically. By this I mean those ‘tremors’ turn to ‘earthquakes’. And from what I have observed as an adult, kids have a very high threshold for pain. So you can imagine seeing a child crying and screaming in pain, grabbing any available piece of cloth to tie round his/her waist, or just running back and forth not knowing what to do…. *pause, rubbing eyes due to stinging tears* ……saying “mommy my back, remove my back” and the mom confused saying “okay come and lie down let me remove it” this is not funny! A mother that has sickle cell as kid/kids is a SUPER HERO! Anyways, she rubs the hot balm on my back (just in case we have forgotten, it’s MY story) saying “I am removing your back, don’t worry it will stop paining you soon”. Those comforting words alone, did a great deal of help, no child wants to be yelled at especially when they can’t control what they feel and how they react to it.

Maama (my mommy), had two sickle cell anemic patients as kids. I am the first and my younger sister, Mona, who died, August 17, 2001. So going to the hospital occurred weekly. And I learnt at an early age how to ‘doctor’ my younger sister when her crisis started at night. I could relate to her and she could relate to me; we were two peas in a pod. She was and still is my favorite sister..…. I shall tell her story some other time, Insha Allah.

Sometimes, the pain subsided after being rubbed, sometimes I had to take analgesic and sometimes, the clinic or hospital was the only solution. I was regularly receiving treatment for malaria, not even talking about the prophylaxis I was confined to. I mean, I get annoyed thinking, after the daily and/or weekly doses of prophylaxis for malaria I still had to take quinine as pills or injection. I always went for injection (yes! brave like that). I had to be put on drips and anti-biotics. In those days, most of the time, the normal needles were used to set an intravenous line. It sucked (N).

As for the pains in the limbs, it usually starts out as a feeling of numbness, I’m hoping to relate to everyone here now, so pay attention; have you ever slept on your arm for long and woke up feeling like ‘ants’ have invaded your hands? It feels numbed…. Or have you ever sat on your legs folded underneath you for quite a while and then you start to experience some sort of ‘pain’ which makes you want to jump up quickly? You have? Oh that is just lovely! I have the best readers in the world *broad grin*. Well those pains are just how the crises of my limbs feel like when they are starting.

I think I will save this for another story *wink*