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Dan’s PSC Journey: Diagnosis, Transplant and Recovery

Undergoing a liver transplant is a remarkable achievement, yet what follows in its wake?

Six months after receiving a new liver, Dan has kindly shared an update on his journey with PSC. His active lifestyle and positive attitude played pivotal roles in his recovery. From enduring the challenges of pre-transplant fatigue and persistent itching to rediscovering the joy of running, climbing, and weightlifting, Dan's story paints a picture of determination and resilience.

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Hey everyone, my name is Dan, and I wanted to share my journey with primary sclerosing cholangitis (PSC) - a rare liver condition. It's been quite a ride, and I hope my story can offer some insight and positivity to others who might be going through a similar experience.

White male with brown hair and sunglasses on, running in a green vest with race number and black shorts

In the Beginning

It all started back in 2011 when I went to my GP with symptoms that turned out to be colitis, which is common among PSC sufferers. Through blood tests and a liver biopsy, they discovered I had PSC. Interestingly, at the time, colitis was my main concern, and PSC seemed like a background issue.

At first I was annoyed at the universe. How could I have this thing [PSC] when I do all the right healthy things with my lifestyle? I decided that rather than be annoyed I would simply crack on and do what was in my control to keep fit and healthy.

For several years, I managed colitis while PSC stayed relatively invisible, hiding in blood tests and biopsies. Around 2016-2017, things changed. The itching, a common PSC symptom, hit me hard. It's tough to describe how relentless and consuming that sensation can be. However, with some medication and dietary adjustments, I managed to get it under control. Cutting out sugary foods seemed to help as well.

Life Before PSC

White male with brown hair, smiling flexing biceps while carrying a barrel and covered in mud

It got to be too much

Fatigue also became a significant challenge. In November 2022 the fatigue was too much. After just a few hours into my day I felt exhausted. I was signed off from work and put on the transplant list due to my worsening condition. It was a challenging time with the world still recovering from the effects of COVID-19. I remained hopeful even after two transplant offers fell through. In February 2023 a transplant finally came through. It was a life-changing experience.

Transplant time

Rather unexpectedly while I was on the transplant waiting list I was contacted by Channel 5 about a documentary series called “Surgeons: A Matter of Life or Death”.  When I received a donor liver my surgery was filmed for this documentary (Episode 2). Even though I was undergoing major surgery, in my head I still felt like my PSC “wasn’t that bad”. It was only really when the doctors remarked on how large my liver was that I realised just how urgently I needed this life saving surgery and how fortunate I had been with regard to my symptoms and experience with PSC and the transplant process.

Recovery wasn't instant

I didn’t recognise myself in the mirror one week after transplant as I lost all my muscle and looked like a stick insect. I've always been active, participating in running, rock climbing, and going to the gym daily. However, the transplant had taken a toll on my body, and it took time to regain my strength. I had to be patient with myself and my body as I worked to rebuild my stamina, muscle mass, and energy levels.

Looking back, I realise how lucky I was in some ways. My positive mindset helped me cope. I didn't delve into the horror stories often found on support groups, and I managed to stay active and engaged in life. My wife has been my rock, more than a rock really, perhaps a whole mountain! And my son (age 10) and daughter (age 3) have been great at keeping my spirits up. I also had supportive friends and family who all played a crucial role in keeping me going.

Six month post transplant

Today, six months post-transplant, I'm back at work, climbing, running, and lifting weights again. Each day is a step forward, a step back to the life I cherish. While PSC is a part of my story, it doesn't define me. There are still some days when I feel all the feelings all at once. The further away I get from the transplant the more it will become a footnote (aside from the gnarly scar of course). But rather than it stirring up bad memories I am trying to look at it as a badge of honour.

If there's one thing I'd like to convey through my journey, it's the importance of maintaining a positive outlook, controlling the things you can and getting the right care for this things you cannot. Find support in those around you, and try not to let the challenges define your life.

Remember, each PSC journey is unique. Some face more significant challenges, while others have milder experiences. Whatever your path, know that there's a community here to support you as and when you are ready. Stay strong, stay positive, and keep moving forward.

Dan, September 2023

Thank you to Dan for sharing his transplant story with us for Organ Donation Week 2023.