Ben suddenly started experiencing fatigue and his GP thought at first that it might be Covid. When that was ruled out and his condition worsened Ben went to hospital for a routine colonoscopy and endoscopy and ended up leaving a different hospital six weeks later. During that time he was in and out of comas and was eventually diagnosed with primary sclerosing cholangtitis. He is now on the liver transplant list. Thank you for sharing your story with us, Ben
I was fine, working ten-hour shifts six days a week as a retail manager, having a pretty social life then, at the flick of the switch, everything changed.
I started feeling quite unwell in January 2022, had no energy and couldn’t do more than five minutes of movement without getting tired. When I couldn’t get upstairs and had to sleep on the sofa, I asked to be signed off sick from work. My GP thought it was Covid, then a chest infection but finally told me to go to A&E because, quite honestly, she didn’t know what was wrong. This all happened in about seven days and was very scary.
When I got to A&E at Leicester General and the nurse put a canula in my arm, I knew I wouldn’t be going home that night. I was in for two days and constantly on blood infusions because I had no blood left, but they didn’t know what was wrong either. A colonoscopy and an endoscopy were booked for January 28th – I went back to have those done and left a different hospital six weeks later.
I was in and out of comas during that time and all I know is what my family told me since. The doctors found a mass internal bleed and my liver had pretty much stopped working. There was no blood going through it, so it was all backing up and trying to find a different way to get out. I had a cardiac arrest at one point and my family came in at 10 o’clock at night to say goodbye because the hospital didn’t think I would make it. I was in an induced coma, but my fiancée said that I woke up when they arrived. When my dad came to my bed – I started to move, then I grabbed my mum’s hand. When I saw Emma I tried to get out of bed and wanted to go home.
A team from Leicester Royal Infirmary was now coming in to treat me because I was too unwell to be moved. They gave me every procedure they could think of – they glued me, put a balloon in and banded me. Once I was stable I was moved to the Infirmary and the team put a stent in my liver which is still doing a very good job of keeping the blood flowing. Apart from a few days, I was in intensive care and in and out of induced comas, so my memories of that time are patchy. I only really remember the hallucinations and was utterly adamant they were real.
The first one was the same five-minute scenario on a loop. I was convinced I was in an old Victorian hospital in the past, there was a woman in the corner talking about sandwiches and a nurse kept coming round to me. Then I was transferred to a futuristic hospital where I was in a pod that was healing me.
In the second hallucination I heard songs that didn’t exist but was adamant they did and was trying to find them online. It’s bizarre when you’re telling people about it and they think you’ve gone mad.
The third hallucination was the worst. I was in intensive care and convinced the person next to me was getting better because he was taking my life from me. I was shouting at doctors, but no one would listen and was so convinced I was dying that I rang my fiancée to say goodbye. I can only imagine what that must have been like for her. She contacted my parents and said that if I rang them to ignore me because I was hallucinating. Eventually the hospital managed to calm me down and the next morning I apologized to everyone and was fine after that. It must have been so scary for my family, travelling to all these different hospitals, seeing me at my worst and trying to be strong. I don’t know how they managed to deal with it.
We knew it was the liver, but didn't know what was wrong. When I got to Queen Elizabeth Hospital in Birmingham I knew I'd get all the answers
By now though, we knew it was the liver but didn’t know what was wrong with it. When I was told I was going to Queen Elizabeth Hospital in Birmingham I didn’t want to because I didn’t know how it all worked, but once there I knew I was in the right place because they’re one of, if not the best, liver hospitals in the country, maybe the world. I knew I’d get all the answers there.
It was crazy but I almost started to feel that I was back to normal now. I could shower myself, eat and go to the toilet on my own, be up and about talking to the nurses and making them laugh. I made quite a good friend on the ward too and we’d go down to the shop together or for a walk.
When I first saw the consultant he didn’t talk to me like I was a doctor which I really appreciated because I wouldn’t have understood a word. He said: “I’m pretty sure you’ve got primary sclerosing cholangitis,” then booked all these tests, came back the next day and said: “I told you!”
It was comforting that he was quite blasé about it, but he also explained it incredibly well. He said I had stage 4 cirrhosis, that psc was autoimmune, the only option was a transplant and sadly I couldn’t have a living donor which my fiancée had wanted to be for me. I was also diagnosed with ulcerative colitis of the bowel, so will need a colectomy a few months after the transplant and a stoma bag for life.
I finally knew what was wrong and that life-saving surgery would fix it.
I wasn’t concerned about the surgery because I’d be in the best hands, but the hardest thing to get my head round was that to save my life, someone needed to die. I was in a room by myself at that point and remember sitting at the window and staring out of it for hours just watching people. One of my friends who has now had a transplant said: “It’s their wishes and you carry a piece of them with you to look after.” That made it a little easier.
I was put on the transplant list in July 2022, but then taken straight off because the glue used to stop the bleeding had got into my blood stream and attached itself to my heart. I was told I would need a heart bypass before the transplant to remove the glue. This would limit the donor livers I could receive because the surgeons would need to take into account additional time for the bypass, but then my consultant personally put me on the list where I’ve been for just over a year now. The doctors now think the glue has gone which is good.
I now have clinic every month or so, do physio and my doctor calls me regularly, so I’m constantly updated with the process and what they’ve decided. They’re always trying to make things easier and better for me which is a massive positive because you’re not left in the dark.
My liver is heavily scarred and I will always need a transplant, but some days I almost forget because I feel so well
Healthwise, I feel pretty good – I’m one of the lucky ones and feel for anyone who isn’t. My liver is heavily scarred and I will always need a transplant, but some days I almost forget about that because I feel so well. Other days it’s all I can think about. I almost just want the surgery done now and get to a new normal. I’m dealing with it well, but I’m sure that will change when the phone rings – I’ll be panicking then!
I’m still signed off work. My consultant said if I felt well enough, often enough, I could potentially go back into part-time work. Most people would want time off, but when you’ve had a year-and-a-half, it gets a bit boring. Having that purpose again of getting up and going to a job, even if it’s just a few hours a week, would really help.
It’s pretty much the same thing every day at the minute. I try to do exercise because I know it’s very important that my body is in the perfect state for the surgeon. I read, find myself playing Play Station quite a lot, go for walks and look after our cats. I keep on top of the housework and really enjoy cooking so that’s a bonus when Emma gets home from work. She’s working so hard because I can’t, so I do what I can to help.
A liver disease like mine can affect your appetite but I’m eating as much as I ever have. I just need to keep some of it on me because I don’t know where it goes.
Once I’m transplanted I’m really looking forward to working full time and going abroad on holiday again. We can start planning our wedding again too. It’s on hold because knowing my luck I would get the call when Emma was walking down the aisle!
Deciding whether to donate a loved one’s organ is very difficult, but it’s a conversation people should have if they can. And if you know it’s the wishes of the person who sadly passed away, then please do honour them.
Your gift, generosity and selflessness will save my life.
