SEPTEMBER: SURGERY IN SICKLE CELL

Sometimes surgery comes as part of being a sickle cell and surgery generally is very stressful on the human body so let's imagine how much more stressful it will be on a patient with sickle cell.

As a sickle cell patient we are sometimes going to be faced with having to undergo surgery on an internal organ, or bone. I am not saying we all will but quite a few of us do so. Personally I have had two surgeries. The first one was a Caesarean Section and the second was a laparoscopic cholecystectomy which is the removal of my gall bladder. I had cholecystitis.

For both surgeries, general anaesthesia was used. General anaesthesia (GA) is a combination of drugs that cause sedation, paralysis, amnesia and analgesia. They act together to help a patient undergo a painful traumatic surgical procedure without any sensation which is actually the Greek meaning of ANAESTHESIA. The main mode of action of GA is on the central nervous system. It suppresses the CNS which results in the above mentioned characteristics. Like with all drugs, there are side effects to GA which is why before heading for surgery the anaesthesiologist responsible for you life and health, literally and figuratively, comes in to ask questions, personal and somewhat uncomfortable questions which we have to answer truthfully 100% and not intentionally omit or distort any truth because it could mean the difference between a disastrous and successful surgery. They ask questions on past surgeries you may have had including dental procedures,  there's mouth inspection too, age, on allergic reactions to foods, fruits and drugs, history of substance abuse, what drugs you are on both orthodox and herbal drugs, blood transfusion history and some other questions I cannot remember now. These will help them decide the right anaesthetic dose and duration and what to look out for during and after surgery.

Some of the risks of GA include postoperative vomiting, nausea, death, pulmonary embolism (this is blocking of the pulmonary artery which transports blood from the heart to the lungs by blood clot, air or fat) which in sickle cell can cause acute chest syndrome (ACS) and death. As mentioned above GA acts on the CNS and the CNS as we know from secondary Biology controls the activities of the body, it comprises of the brain and spinal cord. So if it controls our entire body activities and GA suppresses its activities we can only guess how very conscious and precise our anaesthesiologist must be. They have to monitor our hearts and lungs by our vital signs (blood pressure, pulse and breathing rate) since we cannot, move talk or tell them what could be wrong during the procedure.

It is the duty of the lead surgeon to tell the patient and relatives of the patient all the risks involved during and after the surgery and the means by which they can be prepared to prevent such from happening or if they happen the means by which to treat it. You should never go in for a surgery half prepared or relying on Faith without action. It does not work that way. I realize in Africa we have fear of being told the truth and we consider the messenger as the cause of the probable effect. Some people go on to harass the nurse or Dr who informs on what might happen so they have stopped telling us and just say everything will be fine then it goes wrong and the patients are left in chaos and confusion on what and how to solve such emergent issues.

Surgery does not have to be a death sentence. Be informed! Information is key to better health. 

SEPTEMBER: HARASSED WHILE HELPLESS

My name is *Sabrina Fahdeddeen I am 25 years old and I was born with sickle cell anaemia (of course I was, it isn't a communicable dx or a dx that is acquired later on on life) all the same, I live with my aunt who is a working class lady and the only relative I have (who's willing to take care of me) she lost her daughter to sickle cell and then took me as hers when I lost both parents in an accident. She has taken very good care of me and shown me love  and care exactly like my mother would. Last year, 2017 I had a major, major sickle cell crises while she was on a business trip overseas. It was the longest and toughest I have had in a long time. Actually before that I have not had crises in 6 years! I do not know if this counts as an experience of a sickle cell  patient but I feel the need to say this as I have not been able to talk to anyone just yet.

When the crises started I sent my aunt a Whatsapp message informing her about it, since it was very late at night and there was nothing I could do except wait for morning. In the morning I went to the private clinic in which she registered us and I was attended to. In the clinic there was this particular Dr who never greeted patients, was rude and pompous and once I was passing by and heard him yelling at a helpless patient something about the patient setting his own line by himself. I was completely shocked. A few hospital visits later I found out his name and spoke to him politely about the first time I saw him and how he treated that patient. He kept trying to make excuses that some patients are annoying and frustrating. Well boss, I know. I am a patient and have been one forever. We try our best and trust me, the majority of us do not ever want to be in your consulting room nor emergency room. But here we are...like we say in pidgin English "na condition make crayfish bend" so you as a Dr or nurse MUST control yourself and be understanding, patient and tolerant. If we could set our IV lines, we would do so at home. If we knew the right drugs and doses to take we would take them at home, peacefully without bugging you or ourselves going to the hospital.

His name was Dr. *Halilu Abubakar and I talked to him about his treatment of patients and his need to develop more patience with them. He was the one who got to attend to me. I was admitted in a single room and the nurses and attendants were all kind and polite to me,checking on me and taking care of everything I needed before my aunt would return to take over. Dr. Halilu was also among those who would check on me between his rounds and clinic.

One evening while a new IV line had just been set for me on my foot and I was given double dose of pentazocine and half promethazine which all made me sleepy, sleep and generally sedated, and pain  free, Dr Halilu came into my room and started putting his hands up my sleeping T-shirt and squeezing my breasts, he raised the T-shirt and started sucking my breasts as well. I would open my eyes and ask him to stop, tried to push him away but I could not make any sudden movements so as not to disrupt the IV fluid flow. I tried to scream as well but was so sleepy and weak all I could do was beg weakly between sleep for him to stop.  He got beside me and put one of my hand on his penis. He continued like this for quite a while, I cannot say how long, but he finally got up and left. He came back the next day while I was in the same condition and did the same thing. It was terrible and this time I cried begging him with tears to stop but still couldn't make enough sound to attract attention. Finally he left. He came back the third day but I was on very little pentazocine so I was not sleepy or as week. I screamed out when I saw him step into the room. I screamed for him to get out and he kept trying to calm me. But I kept yelling "get out! Get out!" until he finally did.

I was in the hospital for about two weeks, my Aunt had returned, continued taking care of me till I was discharged. He never came back to see me. After being discharged I went for followup clinic and I saw him. I confronted him, asked him why he did what he did and he said it was to help me feel better. I was stunned, and asked which part of medicine were they taught to sexually touch a helpless person who was asking and begging  for it to stop ? He just kept insisting he wanted me to feel better. I had to walk away from him but I will never forgive him not forget.

NB: *All names have been changed to protect the privacy of story teller

SEPTEMBER

What do we know about September? Some will say it is the ninth month of the year. Some will say it ushers in the autumn. Some will say they were born in September. Some will say their loved ones were born September. Some will say they lost a loved one in September. Some will say they got married in September. Some will say "it is Fatum's birthday month" *winks* September is so many different things to so many different persons but one thing we all have in common with September is the dedication of this month as Awareness month to Sickle Cell Disorder.

September is Sickle Cell AWARENESS month!!!

Wait a minute...I thought we had something sickle cell-ish in June? Yes Ma'am, we had World Sickle Cell DAY on June 19. Did I hear you grumble? You feel it's too much days for "just" sickle cell? I am SHOCKED by your attitude!

Do you know Sickle Cell Disorder is one of the highest genetically inherited blood disorder? 

Do you know it is among the highest cause of under 5 mortality rates esp in Africa?

Do you know there are different types of sickle cell disorders depending on race and region?

Do you know people living with sickle cell are among those who are stigmatized?

Do you know sickle cell patients are among those who are at risk of abusing drugs?

Do you know people living with sickle cell are highly prone to being depressed?

Do you know sickle cell patients are among the smartest, brightest and most intelligent when it comes to cognitive abilities?

Do you know friends and family of sickle cell patients can spend at least half their lives shuttling from home to hospital?

Do you know sickle cell disorder has no widely accepted and affordable cure yet?

Do you know sickle cell patients are prone to any other disease? You think of a disease and yes, we can develop it!

Do you still need me to go on about sickle cell disease?

Well, there is a lot many of us do not realize about sickle cell so we can and must dedicate a whole month to this disease. We just want everyone in every part of the universe to be AWARE...maybe one day we'll move to Neptune so, yes, the UNIVERSE has to be aware!

The truth remains sickle cell cannot be eliminated it will be very unrealistic to say that is the aim of awareness. In West Africa, for instance, we need the HbS (haemoglobin S) gene to be able to survive the malaria parasite. Persons with the sickle cell trait (HbAS), that is,  they have a normal gene HbA and an abnormal gene HbS, have been shown to have very high resistance to Malaria parasites. This can be related to their red blood cells (RBCs) not being completely healthy to support the thriving of the parasite yet not completely sickly to have an effect on the RBCs.

Have I made sense so far? No? Please do not hesitate to post your questions in the comments. Thank you.

Thanks to some very lovely persons, I will be posting different experiences of patients and relatives of sickle cell patients through out September. In no particular order of days and their names will be interchanged for privacy purposes.

God bless you <3

MINE IS NINE

Yes she is! Alhamdulillah! My piece of heaven is nine years old. Aisha T. Abdallah turned 9 today and I am so thankful to Allah for her being given to me when I absolutely do not deserve her and I know definitely she does not deserve a mother like me but still, I am ever so glad I have her. She is the one thing I can brag about. Being pregnant with her, giving birth to her, taking care of her for the short period of time I got to, I NEVER get tired of talking about it. Heck! people know the story by heart now LOL! Will still tell, don't care! *sips honeyed green tea*

She is a young lady now. She is smart, bright, loves to play, hums to herself tunelessly while playing alone. She is beautiful, she is strong, she is enduring and patient. I heard her cry silently to herself one night she was with me for the holidays and it broke my heart because I know it was not the first time she had done so and she has never complained or said anything wrong or bad. Like I said, she is enduring and patient. She loves innocently and fiercely, she is brave and mature. She is kind and compassionate. She loves to share whatever she has with other kids, always thinking of her younger brother; so sweet. She loves babies which reminds me of me as a kid, and she's been asking me for a baby sister and/or brother.  Says she'll take care of them/it for me :')

You know how mothers are? We love to assume our kids are perfect. I know mine isn't perfect but I also know she is wonderful and a blessing to me and eventually, in shaa Allah, to all who will cross her path. That's why my prayers for her now, later, tomorrow, next week, next year, forever and always are: 

1- Allah's guidance of her heart, mind, soul, body, thoughts, speech, sight, hearing, movement and actions on to the right path. They should always be solely for His sake and by His Grace.

2- Allah's mercy for without it, no human can survive.

3- Allah's protection for whom so ever He protects, nothing and no one can harm them. 

4- Allah's Grace this has been and will be the only way anything and everything is achieved.

5- Be filled with love for Allah, His messengers and prophets, respect for His books and Angels.

6- Be hardworking, honest, loyal and wise in all her dealings. To learn when to let go and cause no harm or hurt and to have no pride when she's wrong and apologize. To leave arguments for the sake for Allah even when she's right; it is the hardest thing to do but it is always the best.

7- To love and respect her family and try to find the good in a bad situation. To be filled with compassion for the human race. 

8- To be surrounded by persons who will remind her of Allah always, who will be her support and she will be their support. People who will try to cheer her up when she's sad, who will pick her up when she falls, who will fight for her when she can't and who will rejoice with her when she succeeds. I pray Allah takes away, from her path, people/animals/jinns who only intend to use her, gain from her then discard her, people who want to harm her and ruin her life, people who have no value to her nor her to them and most importantly to protect her from the evil of herself and thoughts.

9- Lastly (but not the end, will stop cos she's 9yo) may Allah bless her with Imaan, enrich her with His knowledge which will always see her through any and every trial He may have written for her. Imaan that will last far longer than her last breath on earth.

AMEEN!

Seeing as we had the celebration the weekend before her birthday, 15th July, 2018, permit me to tell you she was so excited. Could hardly sit still for a second. She was so very happy and pleasantly surprised by the second cake she had, she was delighted.

It gladdened my heart like it always gladdens my heart to see her excitedly happy. May she be blessed with reasons to have such happiness in her life forever. Ameen!

Like always my beautiful chocolate cake, I love you and will love you forever, always till my last breath. You are my priceless Princess <3

SOMETHING NEW, SOMETHING BLUE, SOMETHING OLD AND SOMETHING BORROWED

Well, the title sounds like I'm about to make y'all read on marriage or weddings and stuff related to marriage or weddings but I'm not and I'm sorry I misled you *offers apology snacks, food, hugs or drinks as the case may apply*

Generally most people assume I'm an "I've got my life in order, a clear perspective, go-getter, I know what I want and a very keep-it-together girl" but I'm not. I mean, yes I do know what I want, for the most part lakin what I want isn't always what I get or have so I make do with what I have. You know, life...lemons.

When I was in level three, back in 2005/2006, I wanted and hoped to the highest heavens that I'd be hit by an oncoming vehicle and be killed. Suicidal thoughts, it's called. I tried explaining it as I'm not thinking of killing myself but I just hope something kills me and very fast too. It's still suicidal, they said. I was tired, unmotivated and felt very worthless. To be honest that feeling has never really left me and I seem to trust people, men, who fuel the worthless feeling and ladies who take advantage of it but I've known my lady friends now and I have less of those advantage takers around, Alhamdulillah.

So, I have Daddy issues which has made me have a very disastrously poor judgement of the kind of man I deserve to be with. I love my Daddy, you can think otherwise but you still need to know. He's the reason I'm around and he has tried to be there for me, my sisters and mother the best way he knew how to.

My Daddy is  a Marine Engineer and a very,  very, Veryyyyyy excellent one. He can tell an engine (generator) is faulty just by the sound and he can tell you which from among a hundred blaring at the same time! He's awesome at his job. He's very intelligent too. He loves to read; had loads of books on stuff that I have no patience to remember right now. He read newspapers daily. Bought Daily Times, Vanguard and one other which, yes, I can't be bothered to recall! I remember after my level 2 exams I returned home for the holidays and I was telling him how worried I was that I'd fail Biochemistry and he smiled and said, "No you won't. I was very good in biochemistry so I think you are too." Then guess what?! He went on to teach me about polypeptides and pathways and those calculations in biochem...people, I was embarrassed at myself. I couldn't recall any single thing I just kept nodding my head like a lizard! He did this about 40 YEARS ago and me, well I did it about 40 DAYS ago! So yeah, shame on me!!!!! He knows arithmetic (how he calls mathematics) so well SO VERY WELL according to him and a former colleague of his, he was called M.C. Durrell in their days because apparently, that was the name of the author of their arithmetic textbook..... I'm sweating writing about him *gulps water to avoid dehydration*.

Daddy was hardly around during our growing up years, his job took him to all parts of the world for very long periods. Remember NNSL, Nigerian National Shipping Line? He was among the pioneers of that very beautiful ship. What of MV Abuja? (where MV means Moving Vessel) he was among those who went to bring it to Nigeria from Poland. He invited us to his cabin. So cosy, beautiful and lovely. That ship was very amazing and it's such a shame she had to end up in ruins! He took my late younger sister and I forgot r a tour right down to the basement of the ship, the engine room. He called it his Home! He expected me to know the technical names of a ship; you know, deck, starboard etc because, I was in Nigerian Navy Secondary School and we were actually taught those terms in JSS 1 Naval Studies but I wasn't paying attention. I never did pay attention to anything in JS1, honestly speaking. Anyways, it was a lovely weekend with him.

Daddy was there through out my primary to secondary school transition. He took me for my common entrance examination which took place in Queen's College, Yaba, Lagos. It rained that day. He filled my application form for Nigerian Navy Secondary Schools and he wrote my surname as Umaru which is how he spells his and I remember being very upset telling him I want to be Umar and him saying there's no way Father and Daughter can have different spellings of their names. I didn't talk to him all day! He was so proud of me when I got the Navy admission.

When I gave birth to Aisha, he was so excited. When I went back home after my divorce he was supportive, understanding and kind. He helped with Aisha when he could. Daddy calls me on 9th or sometimes 23rd September singing the Happy Birthday song and it amuses me so I haven't had the heart to tell him it's on 4th September... It's love *falling hearts* plus, that he remembers it's in September is a very big deal too!

When Mona was down and needed blood transfusion, he was there for her and I remember very clearly him saying to her "If you need more than my blood I will give it to you. So don't ever worry about anything anytime it comes to your health." He was also very proud of her when she got her Navy admission as well. Although he didn't handle her last days very well, he seemed to be absent and when he was present he had misunderstandings with the nursing staff. No, *smh* he didn't handle it well. Then she died. He didn't handle the condolence visits well either, which actually later made Maama laugh when she remembered.

Daddy stayed with Amina when she had her psychological issues although he never believed it was medical which is really quite something because our Maama kept telling him it was medical and he kept insisting it was spiritual... Well, we know who won!

Men, listen to your wives. They know stuff you'll never know!

Daddy's story is my Something New; I've never written about him.
Daddy is my Something Blue; sometimes he makes me sad (blue) and sometimes he makes me happy (blue is my favorite and calming colour).
Daddy is my Something Old; I've had him all my life plus he's old.
Daddy is my Something Borrowed; I know he was given to me for a short while only.

GREAT EIGHT

I am overwhelmed! It's been eight years and you are every memory as joyous as you've been since the first second I knew about you! I know I say this very often but YOU ARE LOVED!!! Not just by me, Maama, your Daddy and family members but by anyone who meets or hears about you. And a lot of us do not have the chance to express or show the love as often as we might wish but for this day, YOUR DAY, we have come together to make sure you have fun, laughter, to make sure you feel loved and special. It is one short day we crammed as much of ourselves and emotions into so you feel you are in our thoughts every single day; near or far.

Joyeux anniversaire, mon petit-aime!!! 

This year started out for you on a very rough note; accident, death, injuries, trauma, hospitalization and grief but you have made it to this day by The Mercy of Allah and I am very, very, very thankful for that. Alhamdulillah!!! I am most thankful for I feel it brought us not only physically closer but also mentally and it created a little better understanding of each other.

So, this year we did the celebration a lot earlier than we usually do, we had it on Saturday 15th July, 2017 for so many family reasons which we are still thankful for. The day turned out beautiful mostly because you were happy and excited. the welcome run and hug I got from you *melts away with love* let all the days of stress-worrying and planning pay off. Alhamdulillah!

So, both aunt Amina (my sister and Mummy's sister) were present, their kids, aunt Zainab and Sa'a's kids too as well as my in-law from Amina's side, aunt Nasira with her kids. Tariq was there too, of course and Daddy's soldiers were present. Mummy made very tasty fried rice, snacks, drinks and salad to celebrate the occasion, to be honest, our tummy's were very much happy too *chuckles*.

Even though we had to rush the event due to late arrival and need to depart early for distance and safety reasons, we all had a great time; singing the Happy Birthday song, watching you blow out your figure 8 candle and cut the cake! You radiated joy!!!

Again, I love you. We all do. You bring us together, make us all happy and teach us how to remain strong even when it seems bleak. May Allah always be your strength, comfort and guide. May He always keep you safe, protected and guided onto the right path and may your Imaan grow daily as you grow and mature into a smarter and more beautiful young girl. AMEEN!!!!!

XOXO

JUNE 19; IN SICKLE CELL DISORDER AND IN HEALTH

How did it get to be June 19 so fast? I mean, I'm not complaining, nooo I'm amazed and grateful that I'm here again. Another year and well. In fact, so very well I can hardly believe I've been suffering for the past year!

Yes, so, if you've read my last post, you'll remember I wrote about my experience and how I've been having constant bone pain aka sickle cell crises ... I can't remember, did I write on that or just the PTSD? Please don't make me read my post *BBM crying emoji* Anyways, I have been having recurring SC crises and I've been put on basically all the analgesics there is to be put on; from the ones that make me slightly dizzy and drowsy and sleepy to the ones that out right make me a drunken person who has never taken alcohol to point of being drunk. Yes please. I have taken alcohol, as a kid, when all those scammers would come to desperate mother's of sickle cell patients and tell them take such and such it will CURE sickle cell in three months and the poor blessed mother's would obey. Not being medical or scientific to understand that diseases of the genes can only ever be cured through the genes or never cured at all. But, again, I'm swerving *does Fast and Furious swerving back to original lane* ;) and some of those analgesics gave me severe stomach aches and I believe a bit of dependence on them for when I stop taking I get headaches. Headaches from Hades in the down under world! I think I need a new head, a new GI system or a new self, I wouldn't mind! Pretty please!? *Doe eyed*

The aches (crises) made me visit the accident and emergency of AKTH a lot and I got pricked a lot and my once very good and vibrant veins which used pink cannula began to disappear and then I degraded to blue and now I use the yellow and even with that, the Dr's complain that the needle on the yellow are much, much larger than any visible, useful vein. Word of advice, in your daily thanks to the Lord, be thankful for your veins! It started taking long hours and more than one Dr who gives it more than 3 tries to get a line. Sometimes we opt for IM analgesic before a line is set so as to ease my pain. It started to take a toll on me psychologically, I could feel it but no one could, I've become so good at masking my depression  it's a wonder I'm not fully ... Alhamdulillah! I hang on and find joy in distant love that is pure and will never die, hopefully. I think of how our beloved Prophet (SAW) endured so much but was a comfort to others and I say to myself "Girl! You whine too much! Appreciate what you have before that's gone too!" And damn right that's what I do! Plus I cry a GREAT deal, forget about the ones you THINK you've seen, you ain't seen NOTHING and you ain't gonna see too! It helps ease some of the burdens I feel I carry alone!

On a very lovely Saturday or was it Sunday, I can't recall, Dr AD Waziri came to visit, and, yes I've mentioned it in my last post but, tough! He saw as far as his medical haematological expert eye would allow him see, that I was looking awful and needed help and he said I needed to start Hydroxyurea, I did. I have not regretted listening to him. I feel more energetic and probably less loco *LOL* could it be that it has effect on the psyche as well? That would be great, truly. Especially since its side effects are a lot. A very, very lot!

So, I'm on hydroxy and I haven't had crises in three months just one three days back (June 16) probably stress from exam or something. Twasn't so severe but it was aching and disturbing. Although I still experience headaches and that's another story for another time.

Is it a #Happy #WorldSickleCellDay or JUST a #WorldSickleCellDay? I really dunno and honestly don't care! Everyday to a sickle cell patient IS World Sickle Cell Day. We seem to be increasing in number in as much as we definitely are dying in multitudes as well. Sickle Cell is not on the top 10 list of Non-Communicable Diseases and yes, I know it's a Hereditary Disease but then...I'm tired of arguing!

Good night!