The Sickle Cell Diaries: My Crisis 2015

For the past month and change I have been suffering from a severe sickle cell crisis. It seems the timing for me starting these diaries was spot on, because now I have the perfect way to document my experience. Until now I hadn’t been hospitalised since January 2011. For the past few years I had been dealing with my crisis pains at home, with medication, but as I learned this time, that could be extremely dangerous. I was in the hospital for three weeks, and my crisis actually lead to me suffering a blood clot on my lung.

This could have been fatal if I never acted on it by informing the doctors of my chest pain. As soon as I told them they sent me for CT scans, which is what showed the blood clot. To treat it they gave me fluids through a cannula in my vein, blood thinning injections and Warfarin medication. I am now at home recovering from all of this, but with months of blood thinning treatment ahead of me, I will be feeling the effects for a while. Below is a summary of my experience.

sicklecell

The Crisis

I hadn’t truly been well for a while. It all started when I caught an infection. At first the symptoms consisted of an extreme runny nose, and a sore throat. Then the infection lead to an inflammation in my left ear and I was temporarily deaf in that ear. Then I started getting Sickle Cell pains. It’s safe to say that the infections I had triggered this crisis.

I was adamant on carrying on with my life regardless of the pains. So I went to work in pain hoping things got better before they got worse. Unfortunately it did get worse.

The sickling started in my left hip, then it moved to my right shoulder and elbow. On the night I decided enough was enough and decided to go into hospital it was in my right hip, and I was unable to walk on it at all.

The pain stayed in this hip for the majority of my stay in the hospital, but there were instances where my knees and elbows would bring anguish for a while. I had an MRI scan about a week and a half into my hospital stay that revealed excessive sickling even in areas that weren’t currently hurting me. At this point doctors were ordering more fluids for me, and offering to boost the dose of the morphine PCA pump connected to my cannula. At this point they were quite certain that I had an infection that was triggering the excessive sickling, so they put me on a stronger antibiotic.

Days later I started experiencing chest pain. It would hurt badly when I was laying down, or when gas passed through my chest (before a burp), or when laughing. I notified the doctor of this pain when he came to see me at my bed, and that’s when they ordered my CT scan and found the blood clot. They began my blood thinning treatments immediately, and ordered me to stay on fluids through the cannula.

It’s safe to say this was my most severe crisis ever, and I’m lucky to have made it through.

14/11/13 GV-The Luton and Dunstable Hospital

Life in hospital

Staying in hospital for anywhere over a week is a depressing experience. For a sickle cell sufferer it can definitely be tough as even most of the nurses aren’t familiar with how the disorder works. It’s easy for misunderstandings to occur based on nurses and carers not understanding your condition.

What made it worse is that due to the high capacity at the Luton & Dunstable hospital, I had to stay on a surgical ward instead of a medical one. Surgical nurses are oftentimes completely unaware of medical conditions as they are used to seeing short term patients recovering from surgical treatment.

One example of this misunderstanding occurring is the nurses trying to push their physio therapist team on me. Sickle Cell patients suffering from a crisis don’t need physio therapy, because once the pain of the sickling has gone we can walk and maneuver fine. But attempting to walk on a hip or knee full of sickling will only aggravate the pain further. Physio therapists are there to help people get back into the habit of moving around after some form of surgical or physical treatment, and this doesn’t apply to someone going through a Sickle Cell crisis.

Another example is one of the nurses taking me off my cannula fluids because they believed I could drink enough to make up for it. The doctor was furious when he learned they had taken me off the fluids, and demanded me to stay on them.

As you can imagine, I spent a lot of time in bed or sitting in the chair (when I felt up to it). Which can be even more depressing, as you’re married to one spot for what feels like a lifetime. It’s not so bad at first, as the morphine had me sleeping a lot, and I didn’t feel the pain as much when initially dosed up. But eventually the effectiveness of the drug wore off and I began to feel the stabbing pains again, as well as the mental anguish of being stuck in hospital.

cannula

My hospital horror stories

A cannula (also referred to as an IV) is a needle that is inserted into a patients veins, for the purpose of giving the patient some form of treatment directly into the vein. Whenever I go into hospital I usually always get given fluids and painkillers (morphine) through it, as well as antibiotics.

These cannula’s should usually be taken out and moved to another vein after three days, but with how busy the hospital is, it doesn’t always happen.

For whatever reason, the nurses decided to take my cannula out after the first week, and leave it out. So during this time I was receiving oral medication only.

Then, when I informed my doctor of my chest pain he ordered my CT scan. For a CT scan it’s required that you have a cannula, so they can inject you with the formula they need to see inside you with the scanning equipment.

On this day, my blood was obviously in bad shape, so my veins were weak. It took the nurses two pokes inside my skin to find a vein that would hold the cannula, but that wasn’t the end of it. When I arrived at the scan, the person working there informed me that the nurses had put in the wrong cannula, and that the one I had wouldn’t allow me to go through with the scan. So they ordered the doctor to cannulate me this time, and it took him another two tries, but he wasn’t able to find a vein.

Luckily, I still had the cannula the nurse’s gave me, so they decided to give me a different kind of scan in which the cannula could be used. By that point I was already mentally drained. My chest was killing me, my hip had stabbing pains, and I’d been poked with a needle a total of five times that day (I’d also had a blood test in the morning). I felt like crying, but instead I was stuck in a trance. I’d already been broken by that point, and I realised that this is just life.

The horror story doesn’t end there though. Four days later the nurses go to give me my antibiotics through the cannula (it was in my right hand). I notice it stinging badly while the nurse was pushing the medicine through. Then I look at my hand and see it inflating as it was going in. I panicked and told her to stop. She told me she would have someone remove it for me.

Subconsciously I knew something was up with that cannula, it was uncomfortable the entire time it was in there. My guess is that the vein was too weak to hold it any longer, and it collapsed as she pushed in my antibiotics, which then inflated my hand, making it swell up for the rest of the day.

Blood Sample

Blood thinning treatment

Due to the blood clot I suffered on my lung, I am now on a blood thinning treatment called Warfarin for the next six months. This means that the hospital has to monitor my blood frequently (weekly at the moment), to check my International Normalised Ratio (INR) levels. They have constantly been changing the dose of the treatment to keep my INR level between 2 and 3.

I was told that this treatment could possibly be for life if I suffer anymore blood clots, but for the moment I’m just on it for 6 months. This medication is pretty serious, it can make you bleed (through your nose, urine or backside), so monitoring is important. It also means no more alcohol for me until it’s over with. Drinking alcohol will cause bleeding on this medication, so I’ve been advised to either only have one beer in a day, or no alcohol at all. I won’t be taking the risk until I’m off warfarin. And I’m hoping I won’t be on it for life.

Life after hospital

Every Sickle Cell sufferer knows that life can be thrown off track in an instant by a crisis, as is the case for me. I’ve been off work over a month, and my doctors are advising me that I need a couple more weeks to recover fully. I can’t imagine my employers are happy, but I’ve provided them with the paperwork from my hospital and GP.

Other things I’ve wanted to do in life have been thrown off course too, such as driving lessons, planned days out and more. It’s hard living with this disorder when your life can be thrown off balance so unexpectedly, but we just have to do the best we can with it.

I would love to hear of some experiences from other sufferers, so feel free to leave comments below.

  • Gray

    Hey man, I’m sorry to bring up a morbid subject, but I had a friend die very unexpectedly from this kind of event recently. Is this…did he just get unlucky? They sent him home from the hospital, he thought he should’ve stayed but they sent him home with meds…is that normal? I don’t understand why my bro isn’t in this life anymore

    I’m glad you made it through okay. You seem like a good person. I wish you a long life worth fighting for, man. I’m sorry if this is inappropriate, I’ll delete it if it is. Thanks for your time

    • Hi Gray. I’m sorry to hear about your friend man. Your comment isn’t inappropriate at all. More people need to know about the effects of Sickle Cell.

      It’s unfortunate that they sent him home so early. It’s easy for others to misunderstand our condition, and hard for them to understand just how much pain we’re in. It’s so sad that this lead to your friend dying. My condolences go out to you and his family. Feel free to contact me via my form if you would like to discuss this further. http://www.garyaswaby.com/contact/

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