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Ben Looks to the Future After Receiving a Life Saving Liver

Undergoing a liver transplant is a remarkable undertaking. Over the span of just over three years Ben was diagnosed with PSC, put on the transplant list and underwent a life saving liver transplant.

Four months after receiving a new liver, Ben has kindly shared this update in his own words. Everyone experiences PSC differently. This is Ben’s unique journey.

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My name is Ben and I am 31 years old. I was originally diagnosed with PSC in February 2021, aged 28 after first falling ill in January 2021 and spending around 6 weeks in hospital.

Before and after picture of Ben. Left Ben looking at camera smiling, red Christmas hat on, jaundiced skin. Right Ben looking at camera smiling looking healthy and happy

In the Beginning

It all began when I started feeling ill one day at work. I then went to a couple of GPs over a few days as I just kept getting worse and knew something wasn’t right.  The second GP I saw thankfully said she didn’t know what was wrong and to go straight to A&E. After seeing them there I spent 2 days in hospital receiving blood infusions as my levels were extremely low. At the end of January I was booked for a colonoscopy and an endoscopy and that’s when it all went downhill. 

I suffered a cardiac arrest due to mass internal bleeding and very nearly lost my life, so close that the hospital called my family to say goodbye just in case. I was in and out of induced comas to try and stop the bleeding. They tried every procedure until something finally worked. Once I was stable enough to be transferred to QE Birmingham as they were helping LRI Leicester investigate and realised it was liver related so wanted me there. After a couple of tests they diagnosed PSC as the bleeding had been caused by varices bursting due to the high level of scarring on my liver by cirrhosis.

Mixed Emotions

When I received the diagnosis and was told I needed a liver transplant to survive I honestly didn’t know how to feel. I was shocked and confused but also relieved there was an answer and a solution to hopefully save me. I remember sitting looking out of my hospital room window watching people thinking that any one of them could save my life and they don’t even know it. It was very surreal. 

Managing Symptoms

My main symptoms were fatigue and itching. The itching being extremely bad at times. Further into the illness I also became quite jaundiced. Thankfully I was very lucky and could still go about my life and  do most day to day tasks. I could not work and some tasks were too much for me due to the extreme tiredness and soreness. I was able to do the 5K donor walk at the British Transplant Games 2023 and aim to compete properly in 2025 now I am post transplant. 

Ben looking at camera smiling holding his medal from the 5K Donor Walk at the British Transplant Games 2023
Ben took part in the 5K donor walk at the British Transplant Games 2023.

PSC really did affect me as I wasn’t able to work and also missed out on holidays and days out, either being too tired or obviously not being allowed to be too far away from my hospital just in case the call came, especially not leaving the country as flying would have been too dangerous and would have meant having to come off the list.

Ben looking directly at camera, in a hospital setting, black t-shirt, medical mask on with tubes, band around his arm and a patch with tubes on his abdomen
Ben took part in the ExaLT trial looking at the efficacy of a home-based exercise and motivational programme in patients before and after liver transplantation.

Life on the List

Life waiting on the list was tough at times. The uncertainty of when the call will come, if it ever came, was difficult and not being able to work made it feel like an eternity. In total I was on the list for almost 2 years with no false alarms. I was delayed a few months from being put onto the list as some glue from a procedure to stop the bleeding and come away and attached itself to my heart. Once that was sorted I was activated onto the national transplant waiting list. 

Transplant Time

Thankfully though my call did eventually come in April. On April 23rd 2024 I was transplanted at QE Birmingham, in surgery for 5 and a half hours and in hospital for 6 days and everything is going amazingly so far. I am extremely grateful for my donor and my surgeon and her team for saving my life. 

Ben in hospital bed laying down looking at camera smiling while holding a yogurt
Ben one day after his transplant. The first thing he said was “can I eat?”

Looking to the Future

I have chosen to raise money for PSC Support and will always continue to do so in the future as I want to see a day when PSC is better understood and hopefully has a cure and I would love to be able to know I was a part of that happening. 

 

Ben, August 2024

 

Thank you to Ben for sharing his transplant story with us following the Summer 2024 British Transplant Games.

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