After more than 18 months on the transplant list Ben received his new liver and says he feels incredible. He believes that being part of the ExALT trial, which focused on diet and exercise for pre-transplant patients, played a big part in his recovery. Thank you for updating your story, Ben.
It’s a year since I had my liver transplant and I feel incredible! I am very grateful to my donor, the surgeon and everyone at the hospital.
I was on the transplant list for around 19 months, which felt like a lifetime and was very monotonous. I’d wake up, sort the cats, have breakfast, maybe go for a walk if I felt well enough, or if not, I’d do nothing then go to bed, then rinse and repeat. Everything’s different now. I’m applying for work and once I get a job, I’ll buy some running shoes so I can run marathons, compete in the Transplant Games and fundraise for the British Liver Trust!
Four or five months after I joined the list one of my doctors invited me to take part in the ExALT trial which focused on physiotherapy to build you up for the transplant. It was fascinating. I was given exercises to do at home and a watch which tracked everything I did. The physios would check the results and measure my leg muscles and the fat in my arms, then alter the exercises depending on the results. Working with a dietitian helped me put on weight too and everyone was impressed by how much improvement there was. 
I think the trial worked for me because while there were days where the illness and the fatigue were bad, I reached a point where I was feeling good most days and doing well. The transplant only took five hours and I was only in hospital for eight days, so while my surgeon obviously did the hard part, it all went smoother than anyone could have expected considering how bad I’d been in the beginning. Now every time I see my consultant and the physios I tell them what a massive help the trial was.
Transplant coordinator calls
Many of my transplant friends wanted to know everything about their condition, but I said to my doctors – just tell me when it gets bad. I was doing well mentally and didn’t want any reason for that to change and my partner was very much the same. Nothing did get any worse until towards the end when the symptoms, like itching and jaundice that I’d never had all started coming out – and they were really bad. Although I didn’t really feel a decline in my health when I look at photos from before the transplant, I don’t recognise myself.
Waiting for the call was mental torture and I panicked every time the phone rang. That passed after a few months, so when I did get the call, I thought “Oh, not another MRI…” until they said they might have a match for me. I was speechless at first, followed by a lot of noises and swearing!
I only had that one call and it came one afternoon in April 2024 at around 3pm. I went into surgery at 6am the next day and was done by 11am. When they woke me the following morning I already felt better – there was no itching and I could tell the jaundice had faded. Weirdly, there was no pain, so I didn’t need the pain button and only had a couple of paracetamols here and there.
The first time they got me out of bed and put me in the chair I was only in it for about 20 minutes because it was exhausting. I managed a decent walk later and because my bloods were fine, I was moved out intensive care and onto the ward after just 24 hours. A day later some friends who were also transplant recipients visited and their jaws dropped when they saw I was up on my feet helping other patients. One of them joked: “What is wrong with you?” and we still laugh about it now. When I got home my partner didn’t let me do a lot, even though I felt I could, but it meant I could take the time to listen to my body. If I needed to lie down all day, I would and if I needed a walk, I walked. Within a couple of weeks I felt normal, which is crazy, and went swimming two months later.
The liver has been perfect from day one, my bloods are always pristine and the amount of medication I’m on is ridiculously low. I take one aspirin and three tacrolimus in the morning, then two azathioprine in the evening and that’s it. I think I got the perfect donor and the perfect surgeon. Perhaps because the beginning was that horrendous, I needed a little bit of a break.
While PSC can come back for a second and even third time, there’s no immediate concern that it will because everything is looking very good. Eight months post-transplant I had a planned colectomy and stoma fitted to treat my ulcerative colitis and everything went really well. I was in hospital for just four days and I think the ExALT trial got me in an incredible position for that too. 
Although I still go to clinics, I feel like I’m finally starting to leave the hospital in the past and reintegrating myself into a normal life. My doctors tell me to keep doing what I’m doing – eating well and exercising regularly. In March 2025 my bowel surgeon said I was their feel-good Friday patient and that I should go and enjoy life and I definitely have. I went to Barcelona for a week at the end of March which I never thought would happen again!
While I was on the transplant list I was obviously not doing great physically, but I felt fine mentally. Then there was the complete and utter joy of having the transplant, but also sadness for my donor. A year on, I realised I’d not fully started to process everything emotionally because it’s always been more important for me to make sure everyone around me is fine.
Online support groups
I kept being asked if everything was OK and the only way to explain was that I didn’t feel anything. I’ve not cried, been frustrated, angry or sad and wondered if one day I’d lose it completely. I wanted to figure it all out before it came crashing down on me, so decided to write my journey into a book and that’s definitely helped.
I keep in touch with a lot of the people I met on the British Liver Trust’s online support group and I’m grateful to the organisation for putting that together. From a mental standpoint the group is fantastic because you meet people of different ages and races who are in a similar position to you. It feels like a family because everyone supports each other in their downs and celebrates their ups.
When liver patients and their loved ones reach out to me on Instagram, I tell them to focus on the good days, take advantage of them and not overthink things – although that’s easier said than done. The main thing is to not give up hope. It’s very easy to think that phone call will never come and if you see other people being called when you’re not, it can be disheartening. Just keep the faith that your perfect match will come. You’re in the best hands possible medically so let them do the worrying for you.
Read more about Ben’s diagnosis and time on the liver transplant waiting list
