#LafiyaListens: Living With Sickle Cell
I was woken up by a sharp pain in my chest. It felt as though somebody had taken a dagger straight to the centre of my diaphragm. I screamed. My mum flew into my room quicker than I could blink “What’s wrong?” She asked.
“I don’t know” I wailed. I didn’t know. I had no idea what was wrong I just knew my chest was in agony. “I’ll be fine” I whispered, “I’ll just take some paracetamol and sleep it off.” Sounds stupid right? Well, in my defence I genuinely had no idea what the cause of the pain was, nor did I want to cancel my plans for the evening. So I popped two paracetamol tablets and tried to sleep. It didn’t work. The pain spread, up from my chest to my shoulders. I took some ibuprofen. Again, no change. The situation became progressively worse.
“Does it feel like sickle pain?” My mum asked, as she massaged my chest and shoulders, in a failing attempt to minimise the pain.
“Sickle pain?” I thought to myself. I didn’t even understand what that meant? I mean, I knew I had sickle cell, theoretically, but I hadn’t had a crisis or been in hospital since I was about 6. That was a whole decade ago.“Maybe” I muttered in response. By now the pain had spread practically everywhere, my chest, shoulders, arms and legs had all been overcome with pain. My mum called an ambulance. I felt as if my body had been laid bare on a pit of burning coals. The pain spread through my body like wildfire. Tears fell from my eyes. I could no longer hold them back, the pain was excruciating, unlike anything I had ever experienced throughout my short 16 years.
The ambulance arrived and the next few hours were a blur, entonox was an absolute godsend. Once I was admitted into the intensive care unit (ICU) from A&E, I had to say goodbye to the relief I found in my new best friend entonox. I was treated with various opiates, none of which worked. I spent my time screaming and crying in agony and occasionally throwing up every time I tried to eat. My mum and a nurse were by my side throughout.
On day three, a tall slim doctor called Paul came to see me. He was pale skinned with piercing blue eyes. He wore a blue shirt which caused his eyes to stand out more.
“Mary, as you know we have undertaken a series of tests. Not only are we trying to get on top of the pain but we also need to find out what’s causing the pain. It seems you have suffered salmonella food poisoning but you seem to also have pneumonia. Both of these infections simultaneously are likely the causes of the acute chest syndrome and full body crisis you’re experiencing.” so many questions flew around my head. “Salmonella from where please? What on earth is pneumonia? Are you going to stop the pain? When can I go home?” But I said nothing.
“Mary have you ever had a blood transfusion before?” The questions in my head started again – “what’s a blood transfusion? Am I going to need surgery?” But once again I said nothing.
“No” my mum responded to the doctor.
“Mary, we are going to give you something called an exchange transfusion. What that means is we will take out a few units of blood from you and replace it with blood from a donor…blah blah blah” he went on to explain how it would help me, but it was all doctor speak and I was in way too much pain to listen to anything further. Whatever they did, it helped, time passed and finally I was at home. After a week resting at home I was back at school.
I had great AS Level grades, so I was fairly confident that I’d get the AAB I was predicted for my A Levels. This instinct changed a week later after my first exam, which was Law. I knew I had not performed well. Soon afterwards I had my English Literature and Sociology exams.
Fast forward to results day, I opened my UCAS account first thing in the morning and saw I had been unconditionally accepted to both my first and insurance choices. I was ecstatic. I assumed it meant I had achieved my predicted grades so I did not rush to collect my results. My plan was to study Law and Taxation at Bournemouth University to become a lawyer, specialising in tax law, and everything was falling into place – or so I thought.
I eventually arrived at school and opened my envelopes: Sociology – B
That was what I was expecting so I was happy.
English Literature – B
I was a bit upset as I was predicted an A but, a B was still okay.
Law – C
I was distraught.
“People like you are so annoying Mary. You got good grades and you got into both of your university choices. I’m here trying to find a place through clearing!” my friend snapped. Little did she know it was not university I was worried about but my chances of acquiring a pupillage or training contract with only 280 UCAS points. I came home and told my parents. My mum told me not to be too hard on myself considering I was in hospital just before my exams. Then I just mentioned “yeh my grades aren’t what I wanted but I got into uni, I’m going to Bournemouth.”
“Bournemouth? Do you think that is wise?” My mum asked.
“Why not?” My dad shrieked.
“After how ill she has just been? How can she go to Bournemouth? What if something happens again? We cannot get to Bournemouth quickly”.
They continued to go back and forth but I had zoned out. The fear of something happening had already resonated with me. That fear led me to go to my insurance university, it wasn’t a great university by any stretch. But as long as I obtained good grades, I assumed the institution choice itself would not matter too much right? WRONG! But that’s an entirely different discussion altogether.
I was very healthy in first year and my grades were good. Second year did not go as well. I was in hospital almost monthly, some crises were more serious than others, but I was being admitted frequently. I frequently thought that it was a good thing I listened to my mum about my uni choice. She had to come to visit me regularly due to how ill I was. I will not bore you with the ins and outs of every crisis I had, I will only detail one of the more serious ones.
In second year, I lived with three friends and one stranger. Two of my friends smoked, I didn’t think it was a big deal. Growing up both my dad and childminder smoked and it had little to no impact on my health. But one of my friends smoked inside the house, her and her boyfriend – we frequently asked them not to smoke inside the house. One day the almost routine crisis pain came, though most of my recent crises had been in my legs. This one was in chest. I used my mobile and sent a text to the girls. They came rushing in, carried me to the car and drove me to the hospital. Like I said, it was a routine. I was in hospital for about four days, once the pain was controlled I was discharged. However upon discharge I noticed I was really short of breath. I would walk a few steps and be panting as if I was morbidly obese. This was not normal for me. I assumed perhaps it was a side effect of the chest crisis I had suffered. It continued for days, I would walk from my room to the kitchen and need a seat before I had energy enough to go back to my room.
Day four post discharge came and I went to the kitchen to get a drink.
I woke up with some sort of head mask over me. The room was bright, I had no idea where I was or why I was being restrained by this mask; all I knew was the light was bright.
“MARY ARE YOU OKAY? CAN YOU HEAR ME MARY? SQUEEZE MY FINGER IF YOU CAN HEAR ME?” Somebody shouted at me. I saw her badge, she was a nurse. I squeezed her finger.
“What happened? Can I take this off?” I asked and pointed to the transparent helmet over my head.
“Mary you’re in hospital. You’re in intensive care. You have to keep this on because it’s helping with your breathing. Your oxygen levels are really low so it’s important you keep it on”.
“Can I have the other oxygen mask? The one that just goes over my mouth and nose, it’s more comfortable.”
“This one is different Mary, it does a different job to the mask you’re thinking of”
I started to think, I’m in ICU again? What kind of life was this? I was only 19 how could I be so critically ill, so young? I had exams and assignments to do. But I was not in pain so I was grateful for that at least.
I inhaled deeply. I screamed.
As I inhaled there was a stabbing pain in my diaphragm. I recognised the pain immediately. I squeezed my buzzer tightly to call the attention of the nurses to request some pain relief. Some time passed and finally some pain relief was administered. Not enough though. Opiates can minimise breathing, my oxygen levels were so low I had collapsed earlier in the day so the pain relief had to be administered cautiously. I was taken for a chest x-ray. My oxygen levels stabilised. A few hours later a petite doctor, who looked about my age came.
“Your x-ray showed that you have something called a pneumothorax”
I thought “pneumonia again?” I stared at her blankly.
“A pneumothorax is essentially a collapsed lung. Your left lung has completely collapsed and your right lung isn’t too far off. Do you smoke?”
As soon as she asked that I knew this was because of my flat mate Georgia and her boyfriend. The doctor went on to explain that this must have happened some time back and worsened over time.
“Perhaps they overlooked it” she responded nervously, as though she didn’t want to agitate me further. She then proceeded to show me something called an incentive spirometer. She showed me how to use it and said I need to use it ten times an hour so help “re-inflate” my lung. Looked simple enough. But there was a catch, it involved inhaling deeply and of course, every time I inhaled the chest pain crippled me. I had no choice but to soldier through the pain.
The next day my flat mates visited me. The very presence of Georgia angered my spirit. The way I saw it, I would not have been there if she had stopped smoking in the house like we all asked her to on several occasions.
“Have they told you what’s wrong?” Emma asked me
“….well?” She said expecting me to continue
“I’ve got a collapsed lung…well one and a half collapsed lungs”
“HOW? I DIDN’T EVEN KNOW LUNGS COULD COLLAPSE!” Emma shrieked. “Do you know how it happened?”
“Yeh, most likely smoke inhalation” I said piercingly. There was a dead silence and Georgia looked to the floor. I knew this because I was stared at her with disgust and anger in my eyes.
Emma broke the awkward silence “…So I spoke with the Course Administrator about getting you an extension on your assignments. She wanted to know if you wanted to defer your exams too?”
She need not ask me twice, I learned my mistake from my A Levels.
“Yes please” I demanded.
After about a week I was discharged. To cut a long story short, I fell ill again before my deferred exams but I really did not want to have to resit the year, so I sat my exams and received my worst ever grades. In life. I even failed one exam. That was a very hard pill to swallow because I had never failed an exam before. I finished second year with a 2:2. Disastrous. I worked extremely hard in third year, I also partied a lot. I had been in ICU twice and I was only 20, I started living more. I finished third year with a 1st, a low first but it was a first nonetheless. My second year grades brought my final grade down to a 2:1.
Now I’m seven years post graduation. Seven years deep into my career. I’m currently doing a masters in competition law. I had to re-strategise my entire career plan due to my grades. But I can work and I’m doing okay for myself so I am still grateful. I know other sickle patients could not work in a high pressure environment like me, nor could they work full time and study part time whilst still having a life. So, I’m grateful.
At the start of this year, I had five hospital admissions back to back. I’ve spent most of 2017 ill; as a result I have had to defer my masters and I start again next academic year. Wish me luck!
Note: all names of friends and medical personnel have been changed.
Personal Blog: tlomah.wordpress.com/