I was given a follow-up appointment for two days after discharge from AKTH to see the hematologists and as the good patient I am *courtesy*, I went and what a waste of time and energy. I never met an incompetent Dr as this, he discharged me knowing I left with some pulmonary stuff and he didn't listen to my chest or breathing or anything at all. He just asked if I had cough and I said yes and he prescribed cough syrup for me saying they'll see me in two weeks told him they'll see me when I'm ready! I was angry but it didn't matter (I didn't know any better) so I just told myself I was going to Abuja to recuperate at home with family; cool weather, love and laughter! But was I wrong!
I traveled on Thursday 28th April and was already starting to enjoy my break when on Sunday May 1st, I began experiencing pains on both shins and waist from 02:00hrs along with fever and headache. I took all my analgesics, covered up praying for relief before dawn. But by 4am it became obvious that I needed a little more than home remedy and oral analgesics but I had to endure till daybreak. Mama AA applied hot water bottle and massaged parts of my body that ached throughout the entire time of waiting. Finally we left for the hospital by 06:00hrs with Noorah. Here we go; first we went to Peacecare Clinics (PCC) located at Third Avenue in Gwarinpa but unfortunately for me, the care was not enough to stop my agony so by early afternoon, I had to be referred to The National Hospital, Abuja for a more intensive treatment. The Dr there (PCC) and I had a good healthy exchange of words; he came in right in the middle of my babbles, Dua and tears and started in a very loud voice, almost yell-like in fact I pass it for shouting! Telling me he knows how I feel and I told him he didn't and he says
Dr: Yes I do know how you feel, you know why?
Me: *in head* he's going to say he's a sickle cell pt
Dr: ... I am also a sickle cell pt
Me: That's a lie and stop saying it cos I don't believe you
Dr: Okay, let me tell you something
Me: Then stop shouting at me or else I'm not interested
Dr: You stop crying!
Me: Is that how you were trained in med school? To shout at your pt? I'm not interested in anything you have to say
Dr: Just stop crying!
Me: Is that how you were trained in med school? Just leave me alone!
And he realized I really wasn't going to listen to him! So he kept quiet and said he was sorry then asked again more quietly if I was ready to listen, told him to knock himself out after all I was in his office! I tell you, if you don't have a "fight" with your Dr, then you're not really sick or you're unconscious or dead! *smug grin* By the way, there should still be that little respect and must try to never lose temper completely! So anyways, it took all my reserved energy to have that argument, mind you I was dying from agonizing heart-wrenching pain. He suggested I try to stretch my legs and arms as far as possible and then breathe in and out as deeply as I could then rest to which I responded "That's what I've been doing for the past 3 hours!" and he suggested the use of ice over the areas that ache and I've absolutely forgotten the reason he gave! Well, after spending the entire morning and first part of the afternoon there given pentazocine in probably the highest doses ever given to me legally, and bags of IV fluid with no improvement at all, he decided to referrer me to National Hospital, Abuja (NHA) for more intensive treatment and he promised to check on me! I know, he's so sweet! Well what can I say, he knows better! *swishes veil* On the referral letter, from what I remember, he wrote all the treatment that I had been given and what exactly I needed paramount to any other further treatment which were oxygen and a bloody strong analgesic!
I was ready to burn down the NHA emergency building due to very slow response for just a wheelchair seeing as I could barely walk by then, both legs felt like lead being scraped and were wobbly as new born giraffes learning to stand! Finally I got one and was wheeled into the consulting room of the most nonchalant, hopeless and ineffective medical doctor in my history of meeting medical doctors! My sister's Noorah and Zara who were with me seems were thinking the same thing as me...We wanted to slam him into the walls of the consulting room! He sat looking at us so stupidly with one ankle crossed over a knee and a hand under his chin as if we came in to waste his time. Zara handed him the referral letter but he still asked "What is wrong with you now?" Couldn't he hear my voice trembling or see how difficult it was for me breathing and talking or how pale I had become by that time or how wobbly my legs were when he made me stand from the wheel chair to lay on the bed and then stand again or how I had to beg my sisters to lift me up gently before I could stand and support me before I could sit or lay down. Most importantly didn't he read the letter in his hand????? Zara had to call Mama AA to tell her the type of treatment I was getting and how my condition was getting worse by the second so Mama called someone (Professor) they know who before the blink of an eye had appeared in the consulting room and began querying the lousy dr-wanna-be on why after reading the letter I was still not attended to, oxygen was written as a priority so he should have put me on it first and given me an analgesic to calm me. You know, if I wasn't already beginning to step into the realm of the unconscious I would have gloated and maybe said a few words of mine. He was visibly upset because I heard him telling either Noorah or Zara that there was no need to call anyone, he was already attending to us! *snorts* attending to us indeed! Anyways after that I was wheeled into one of the A&E rooms, I don't remember much of anything again, except when I began to comprehend happenings around me, it was Thursday. Somehow I was dead sometime from Sunday till Thursday! Allah is Great! Alhamdulillah!
When I woke up I had a pink bed-cover from home covering me I was not wearing trousers or skirt or panties or bra just a batik looking tank top and I had on my right inner thigh some kind of short rubber tube which I didn't ask what it was or why it was there and a big white bandage with white-ish plastic-like plaster holding it down to my skin. I had a blue cannula on my right hand and an oxygen tube inserted into my nose and adjusted round my ears and neck. I had a urinary catheter attached to me as well. Of all the attachable I hate urinary catheter the most, it is just so discomforting but I couldn't ask for it to be taken out just yet for I couldn't support myself to sit, let alone stand or walk I needed help for all that and everything else. When I woke up, I saw my love, Zara, first. She was standing and smiling at me. Then in came aunties and some other person I can't remember whom. They had gotten me a carton of Ribena and water; according to them, those were the only things I agreed to take and chocolate drink too. I really don't remember that. Opening my eyes to see them filled my heart with so much joy. Y'all know what, when I was in the unconscious realm I would open my eyes to see a couple of family members, wave at them then shut my eyes again only to open it and see another set of family members and even though they all really came and according to them I looked at them for a while and slept back, to me it was all a "dream" and it was lovely! Later that Thursday, my Dr's said I would need to be transfused with a minimum of 5 pints with exchanges to reduce the amount of sickled RBCs and I was told I'd be transferred to the female medical ward (FMW) in the evening; I had spent over 24hrs in Emergency and the rule is maximum of 24hrs but my condition was so critical they made an exception for me so I could be under constant observation. I was given analgesics regularly, from oral to suppositories to injections to IVs, I was flooded with drugs, after all, I was in a hospital. Oh and there was antibiotics too, necessary cos I had some sort of pulmonary infection as well, but that was since from AKTH where I was just given cough syrup to take, remember?!
Did I mention I later found out that even though I was brought in for severe VOC I was officially admitted for Anemic Heart Failure?! Imagine that! I always felt sure that my heart would never give into any bullying disease because I have been blessed with so great and powerful a heart but that doesn't mean I ever doubted the power of Allah to inflict me with any form of ailment in any part of my body at anytime of my life! Now I have no doubt that He created the strongest part of me my heart and I can never ever be thankful enough to Him or Praise His Greatness and Mercy over me enough! I had about 5-6 blood transfusion, I reeked of packed blood cells *yuck* and itched uncontrollably; partly from the blood and partly the analgesics. But, before I was transferred to the FMW, a new IV line had to be set and it was decided that it would be a central line which has lesser chances of tissuing or getting blocked like normal veins esp mine which requires flushing every now and then and tissues very fast causing me pain during flows then ultimately is changed. Cannulating me is not a small issue, Dr's were running away from the job in AKTH (it was funny, still is). The femoral catheterization was agreed upon (either that or jugular). *Pause* *rewind to when I mentioned a protruding white-ish rubber being held onto my right inner thigh by white plaster* STOP! The white-ish tube turns out to be a femoral cannula set how extraordinary...not really! Lol! The first time it was fixed, I was in my unconscious state which made me not know how painful and tedious a process it is which also made me pull it out by steadily scratching the place! Why didn't they tie my hands up after the first cannulation??? *wailing* Anyways it had to be done again, on my left leg this time. Three Dr's were present, the two who were going to do the catheterization or cannulation and the hematologist lady (I should find out her name) who was seeing me, she is my favorite Dr! Kept calling me Aisha and was sweet and kind to me, she offered to hold my hands and let me squeeze them as hard as I could when I felt pain while they inserted it. Painful, most, excruciating process that was ever invented for the living patient! I still feel slight pain so I walk gently because of it. But the upside is no matter how painful the injection that's going to be passed through it is, you'll never ever feel the pain and all blood samples could be taken from there, transfusion and blood exchange also through there, in fact, all IV stuff happens through there! Pretty cool stuff! *wink and thumbs up*And then a nurse came about and tried to do her village thing!
ATTENTION: The patient always pays attention to what is being done to them not because most of them want to but because it's the only thing that's interesting being done to them. So they know, most of the time, the right technique in carrying out a process! Plus a few Dr's actually take the time to explain what they're doing and why they're using that system.
As I was typing, she tried giving my antibiotic without first flushing my line with the heparinized normal saline solution and when I told her she had to flush first she became angry! Look here lady, I'm not about to lose my limb over your stupidity and that's the way the Dr's have been giving me my meds and stuff; flush, do the deed and flush again! But she wouldn't listen and it hurt! I screamed because it felt like a needle was being stuck right into my joint! A new IV line had to be set on my right thumb and that hurt too! You know what, at that point in time even looking at me hurt my body, does anyone understand that?!
I seem to remember a few things that might have happened while I was in my unconscious state, it could be wrong that's why I used 'might'. The hematology lady came to ask a few questions with some other Dr's and even though it's not clear, I remember her asking me about my transfusion history and I remember saying I was transfused after my lap cholecystectomy surgery just a pint and she asked before that time but I couldn't remember any other time except that of when I was 7yo and even though she kept calling me Aisha, I just couldn't remember that I had two after I gave birth and numerous bags during pregnancy. Actually, I had no idea I was ever married, pregnant and have a 6yo going on 7yo daughter named AISHA! It all slipped my mind and what makes me sad is that she called me Aisha but it still didn't make any difference to me. I was confused and scared and it seems it showed in my eyes and all over my face "I don't remember any other transfusion", I said quietly. She asked if I knew where I was and who brought me but all I said was "I had crises by 2 and in the morning we went to the hospital and I came with my sisters..." and I got hooked on the words "my sisters" because I didn't know what happened to them or me! I was scared and she saw it and comforted me saying not to worry its normal and very soon I will remember everything I just needed to rest and that I had done well that day. I nodded my head and drifted back to sleep. I was told by one of my sisters, Hanee, on one of days they came to visit and brought food for me, after sitting me upright with support I started eating when all of sudden the spoon and food on it were hanging mid-air in front of my mouth and when they looked at me, I was fast asleep! Another time I was awake but asleep and Zara asked me if I wanted to drink water, I nodded my head then she asked if I wanted Ribena instead still a nod, okay how about a small cup of hot cocoa drink? Yup, another nod of my head. Hanee and I were almost rolling on the floor cos of laughter but she said "it wasn't funny then, it was very sad and pathetic cos it seems all your answers were just going to be a nod of your head." May Allah help those who have lost their memory ameen. I remember winking at a male nurse after he inserted a diclofenac suppository for me because he promised to give me pentazocine injection. I was already high on morphine I dunno why I still asked for penta and I am so very embarrassed if I ever see him I will run the other way! But to be fair, I was really in pain that particular day, I think I removed my oxygen tube for a long while so it kinda affected me. Not my fault :'( I was tired of all the things poking me in almost all parts of my body. So I guess that's just about what I can personally remember and two stories from my sister.
At last, Thursday 5th May, 22:30hrs I was moved to FMW, a double room with its own bathroom/toilet and air-condition. There was a patient in there already but they left the very next day very early in the morning and I didn't know the AC was working :'( whatever! I was still on oxygen without it my SpO2 would drop drastically to 79% or 80something%. See this life, oxygen is free and everywhere all we have to do is breathe in atmospheric air while our lungs filter the oxygen we need out of it, I was getting mine out of a cylinder and tubes. Sometimes I would imagine an idiot who "accidentally" takes a smoke near me and my oxygen and we'd all blow-up! I have to stop watching movies and shows </3. Alhamdulillah nothing of that sort happened and in shaa Allah I pray it never does. So, oxygen, many humans don't realize or appreciate how very great a deal it is for their noses down to the tiniest RBC which transports the oxygen to be fully functional and that the RBCs are intact and can take the required amount without any hassle. Enough emotional stuff, later that night I wished, just a bit, that I could be back in the A/E where the Dr's were seriously regularly checking on me and I could easily get the attention of a nurse. Yes, I knowwwww I love attention a lot but most especially when I'm really sick! Really, who doesn't, even while healthy and well? Oh well, nothing lasts forever and I had my first transfusion just before was taken up and then another when I got up then the left side of my chest started aching and the Dr on call said I should take a break so I don't stress my heart and to make sure the chest pain had nothing to do with the transfusion. I slept okay but the bed is so not comfy even though I had it at cardiac position ie the place where my head and torso would be were elevated higher than the rest of the bed. I started moving gradually when we got upstairs and I gave myself a bath and changed my tank top to a black camisole, I brushed my teeth as well and then I pooped too :D and in the process I tried to pee, not planned or intentional, and by Allah it was a nightmare! Painful and blood stained urine! I just thought to myself I have ruined my urethra let's hope it's not serious. I observed the urine bag and the catheter transported urine as usual with no blood stain in it, Alhamdulillah. I asked them to please remove the catheter and they asked if I can move without support I said yes I could so either Saturday or Sunday, it was taken out and with a bit of force by the nurse, for it really hurt me. The piece that was inside looked shrunken and kinda worn-out. It spent a very long time inside without change. I'm going to check if there's a time limit for this cos its kinda dangerous, one can easily get infected that way. When I wore my under pants I would feel something warm dropping out of me so I checked with tissue and saw it was blood. Oh dear Lord! How? Why? But I didn't say anything just yet, maybe it would stop. But it didn't and the worst part was it had a smell and my lower abdomen and urethra hurt a great deal while peeing I became very worried over it and concluded but prayed that it should not be VVF! Even when I was being discharged and asked any problem, I said no! Yes please, you're allowed to scold me now but don't yell or shout because I will cry and you will wish you hadn't *straight face*
On the morning of the day I was to be discharged, Monday 9th May, 2016, my femoral cannula fell off while I was leaving the bathroom after having a sponge bath. It just dropped right there close to the toilet and I started bleeding, serious bleeding, all I could think was, "instead of slitting the wrist people should try slitting their femoral vein or whatever it is because all this blood being lost from just the tiny opening of a cannula imagine how much faster the person will lose blood from a slit!" Okay lady, you're losing blood that you need so zone back here and do something; but I couldn't, I was watching my flowing blood form a pool at the base of my left foot and it seems I was in shock but thank God for the cleaner who was in the room and quickly told my neighbor to call for the nurse. Lucky for us the nurse came as fast as I have never ever experienced and she put cotton wool on on it applying pressure on the opening and leading me to my bed. The cleaning lady cleaned me up with my wet cloth and soaked it for me then then moped up the floor. The nurse got out more cotton wool from her pocket put it on the opening and continued applying pressure and it was freaking painful then she raised the leg level high too so that blood won't flow down in excess. Well that was some dramatic series*wipes sweat and finally shuts mouth* we should have more bloody accidents in the hospital *innocent smile*. I slept after that till the first Dr's came in, medical team and then an hour or less later, the hematology team came up and I was cleared to go and return for follow up the following week on Thursday.
I love all the haematologist who attended to me, they didn't stress me and they treated me like a patient deserves to be treated!
I still experienced fever at night which after my search on-line turned out to be caused by the urinary tract infection I mentioned earlier and when I told the Dr on my follow-up he said the same thing. I had severe bone aches; from tiniest joint to the longest bone hurt and I could only lay in bed and sleep, had very poor appetite; I'd start eating 4 pieces of poatoes by noon and still wouldn't be none by 18:00hrs, weight was about 43KG and I was in a very dark and exhausting place for a very long time. Now only a few parts of my bones ache; right arm and ribs, I can climb up and down the stairs without wobbling or using help, I've even started running my errands, I feel hungry and eat more, my memory gets better daily (still sucky, it naturally was) and I have been able to compose and type down my stories but I still get tired when I try to do too many things at a time. Although I'm far behind at work and school but I'll take my time and trust in Him who spared my heart and life.
FOLLOW-UP: It was the long stay of the catheter and the forceful pull that injured me a bit but I was still given urine mcs (microscopy culture and sensitivity) test to carry out and the result showed no growth. I was given Augmentin, Vitamin C and advised to take cranberry juice (highly rich in Vitamin C) so my urethra can heal and to also drink lots of water for when I'm dehydrated and go to urinate it'll cause me so much pain (very true). Still on my analgesics and routine drugs and to return for a second followup on 31st May.
Y'all stay safe, happy and be very health conscious. Thank you