My 2026 Sickle Cell Crisis Part 2 – 5 Weeks In Hospital

This entry continues on where I left off in part 1. When I came home from hospital on January 8th, I was sent home with no antibiotics, despite the fact I had been on a specific antibiotic during my whole admission. Unfortunately, the infection was not fully gone; and with no strong antibiotics, I started getting breathing problems again within a couple of days.

I stayed with my mum because I couldn’t look after myself. I would pant out of breath every time I went to the bathroom. And my sickle cell pain was back with a vengeance. The pain was so bad that I couldn’t even lie fully in bed without it hurting too much. I slept sitting up in a recliner chair because that’s what felt the most comfortable.

On January 16th, I had a telephone appointment scheduled with my haematology doctor. I told her about my struggles, and she prescribed me more antibiotics and painkillers. It was a seven-day course of antibiotics. While on that antibiotic, I felt myself getting better again; it kept the infection at bay.

Unfortunately, once the antibiotic ran out on the 7th day, the breathing problems returned once more. And I started to believe I would never get better. I planned to call the haematology department again on the Monday so I could request more antibiotics. However, when I called on January 26th, 2026, the consultant told me I would need to come back into hospital so they can treat me on the ward if I’m still struggling that much.

And so, on January 26th, 2026, I returned to Luton & Dunstable Hospital, where I would spend over 5 weeks suffering with the worst crisis I’ve ever had. I would not go home until March 4th, 2026.

This admission was an emotional rollercoaster. It really tested my patience. I also feel I came very close to death this time around.

Going back to A&E (ER) was frustrating this time. Back on December 28th, they quickly found me a bed, cannulated me and followed my protocol, giving me painkillers, fluids and antibiotics as soon as possible. This time, A&E was extremely busy, so there was no fast-tracking for a sickle cell patient. They brought me to the fit-to-sit section of A&E, even though I wasn’t fit to sit at all. And I was ignored for hours. My mother wasn’t allowed to stay with me because of the limited space in the area.

Back at home, I was taking my painkillers every 4 hours (although they were weaker painkillers), and this ensured the pain didn’t get too unbearable. But in A&E they left me for around 5 hours without painkillers, so when I was asked to move to a side room to receive my IV line (we call that a cannula), I cried because it hurt so much to move. I’m aware that a grown man crying isn’t something anyone wants to see, but there is only so much pain masculinity can hide.

Overall, it took about 11 hours in A&E before I was moved to Ward 1. Ward 1 was far better than Ward 5, which I described in my last post. But they still knew nothing about Sickle Cell. Thankfully, it was only a couple of days before I was moved to Ward 19A, the Haematology ward. My home ward.

Scans showed that there were still traces of the infection in my chest, so I was given courses of multiple antibiotics, in addition to morphine and IV paracetamol. Around the second week of this admission, my pain moved and significantly worsened. At first, the pain had been in my right shoulder and left hip. The pain was now in my left and right hip and lower back. Basically, the entire pelvic region. But I can’t even describe how bad this pain felt. It was so bad I couldn’t move at all. Switching positions was almost impossible without unbearable torture. I couldn’t even position myself on my side.

About 3 weeks in, I almost lost my life. One night when the nurses were checking my blood pressure, temperature, and breathing saturation, they discovered my breathing was getting dangerously low, even while on oxygen. This scared them, and they immediately increased my oxygen and called in a respiratory specialist team to watch over me during the night. Things got so bad that they ended up having to fit me with a super bulky oxygen mask that was so loud I couldn’t hear anyone talking.

They also had to take a special blood test that involves them sticking the needle in the nerve veins on the bottom side of my wrist. OUCH!

The next morning, they had someone from the ICU—intensive care ward—visit me, telling me about the possibility of me being moved to the ICU ward if my condition doesn’t improve. The worst-case scenario would be me being knocked out and put on a ventilator, a machine that breathes for me, while they figure out how to heal my lungs. This was all very scary for me.

My haematology doctors suggested I get an emergency blood exchange treatment because they believed it would immediately improve my condition since the sickling had become quite severe.

For those unfamiliar with this procedure, it involves having two IV’s—one in each arm—and sickle blood will be removed through one arm, while donated blood is transferred through the other arm. The idea is that they reduce your sickling while giving you healthy red blood cells from the donated blood. Eventually, the sickle blood regenerates, as that’s what my body produces by default, but the procedure should at least improve things for a few weeks.

I agreed to the blood exchange, despite my last exchange causing an unusual reaction. Later that day, Henry (my usual blood exchange specialist) showed up to give me the exchange on the ward, bringing all the equipment with him. Henry takes his time and I appreciate that.

The exchange seemed to improve things. Everything except my pain. Within about 3-4 days, the staff was able to wean my oxygen down until my natural breathing improved again. But the pain remained, and my lord it hurt!

Many people came to visit me during this long stay in hospital, and although I get anxious about people seeing me rough and in pain, I do appreciate them caring enough to come. I have to acknowledge them here. Mum was basically there every day and I owe her so much because she’s Supermum. Other people who I want to thank for visiting are: Greg, Clement, George, Rose, Carmen, Kiesha, Kieran, Nigel, Shirley, Masha, Oliver, Anna-Lisa, Dimitri, Rish, and Eustuce.

Coincidentally, I also saw my old university mate Nadeem, who works at the IT department for the hospital. He later got his friend to send over some bottled water for me. That was very nice of him.

And I have to give a big thanks to Carl and Rameez for having over 100 bottles of water delivered to my mum’s house. Sickle Cell patients need A LOT of water so this helped in a major way since my mum no longer had to keep buying bottles of water each day.

Thanks also to Anna-Lisa for bringing a bag of antiseptic wipes and also cooking for me twice.

When my breathing improved, the rest of my hospital stay became dealing with the pain and fighting the infections. As usual, my veins were weak, making the daily blood tests a stressful routine. One of my favourite members of staff on Ward 19A was Kamel. He was superb at finding veins and getting my blood. Kate and Trisha-Mae were also good at it.

My cannula (IV) had to be moved many times, which also brought me great stress. Many of my veins weren’t strong enough to support the cannula, so they’d spend hours trying to get one in me, with different people showing up to try. I would always request ultrasound-guided cannulation, but it seemed like locating an ultrasound machine was too much effort for them. Plus, not all staff is trained for ultrasound cannulation.

I must acknowledge some of the wonderful nurses and staff who took care of me during this long stay. After that long, they felt like family. Thank you to: Shaniqua, Kamel, Regina, Geraldine, A.J, Theresa, Maruf, Trisha-Mae, N’gozi, Jane, Kate, Victory, Henry, Jess, Sascha, Bionello and B.B.

I had so many X-rays, CT scans, and MRIs that I’m sick of them. But they were necessary to track the status of my infections and sickling. One scan showed significant sickling in my hips and lower back. This was what was taking me so long to recover. The sickling from the crisis was excessive because this was such a severe crisis that it was taking the sickling forever to settle down.

By the time I could get out of bed (with great effort), my leg muscles had siezed up, and my body was too weak to allow me to stand or walk. It took days of painful physiotherapy for me to get walking again. But at around the 4-week mark, I was determined to get back home.

Sadly, even with my physical condition improving, doctors wouldn’t let me go. This was because I kept having fever spikes, which suggested I still had active infections. They didn’t want to send me home with an infection in case it caused me to come right back to hospital. These spikes frustrated me because I had no control over them. I could control my physiotherapy progress, but not fever spikes.

I reached my breaking point. I would sulk every time I caught a fever spike, feeling like I could never get back home to normality. But finally, once I hit 48 hours with no fever spike, the doctors finally let me go home. After 5 and a half weeks of this admission, I was finally free.

And now, here I am, still in pain and still recovering. By the time I made it home on the 4th of March, I had missed over two months of 2026. My New Year’s was a late one. I didn’t even make the Chinese New Year.

I have a lot of catching up to do this year, but a part of me is still anxious that I will end up right back in hospital.