Tom's Journey: Transplant 3 and Beyond
In early August my wife Katie and I shared her fundraising journey and how she ran the Manchester Marathon in aid of PSC Support. Behind the scenes, at the time of sharing, I’d been fortunate enough to receive the call for my third Liver Transplant and I’m delighted to report that I’m doing well and everything is heading in the right direction!
My Backstory
I received my first liver transplant in 2017 for PSC, then again in 2023 for recurrent PSC (rPSC). The last two years have been the hardest years of this journey so far.
After what seemed like a successful transplant the second time around, it soon became clear there were underlying issues and I was diagnosed with Biliary Ischaemia that had affected a large portion of the bile ducts within the Liver. This led to repeated infections and hospital stays that massively impacted family life and my ability to work.
It has also been found that there was most likely an element of rPSC in my second transplanted Liver which was quite hard to take but just shows how relentless this disease is, especially in young people with very active immune systems.
Life with PSC after diagnosis
As a ‘hidden disease’ it can be very difficult for others to comprehend the impact that PSC has on our daily lives. When first diagnosed in 2011, I didn’t really think about it too much and chose to bury my head in the sand.
My career has always kept me very busy so I was able to just focus on that. I did what most do and went on a little Google mission one time and swiftly closed the browser when I started to realise the enormity of this condition and what it could lead to…
Fast forward 4 years and in 2015, after a few months of unplanned weight loss, worsening fatigue and insane itch, my Hepatologist told me that I would be referred to Leeds St James’ Hospital to be assessed for Liver Transplant. I vividly remember sitting in the blood room after the appointment with tears rolling down my cheeks in utter disbelief. It was a very strange moment and looking back I was in pure shock. No emotions, just tears and a million thoughts swirling around my mind. This soon passed and I knew there was only one way to face this, head on, with my family by my side and full of the same determination I put into everything I do in life.
Little did I know what was ahead of me, not one, not two, but THREE liver transplants!!!
The daily strain that this cruel disease puts on us is unfathomable for most. The weight of the fatigue on not just carrying out daily tasks, but playing with your children, thinking clearly, communicating effectively and also enjoying the things you love to do is one of the hardest parts of all of this. Add in the unrelenting itch, repeated hospital appointments and admissions (Cholangitis, bleeding oesophageal varices etc), not liking who you have become in the mirror due to the weight loss and jaundice, this disease can take you to the absolute limit.
The Family’s Journey
One of the hardest things about PSC and chronic illness in general is that it stops you from being who you want to be at times and over the years I’ve missed out on so much due to illness. This comes in many forms, from not having the energy to play with my kids, not being able to eat certain foods, losing ground in my career or being able to go on foreign holidays. All this impact’s family life in so many ways.
Having a supportive wife, beautiful children, and wonderful family and friends have been crucial in my ‘why’. People ask me how I keep going amid all the uncertainty and relentlessness of it all and it’s simple. I have so many good reasons to keep fighting and I want to do everything in my power to give them the life they deserve and enjoy myself while I’m at it.
This isn’t always easy, but I do my best and will be eternally grateful for their patience and support through all of this. I’ve seen the emotional toll it takes on everyone close to me and at times, the feeling of being a burden has been overwhelming and it’s been so difficult to see the impact my health woes have had on loved ones mental health and overall quality of life.
Transplant no.3
Knowing how well I felt after my first transplant, when I started to have problems with the second graft, I came to terms with the possibility of a third transplant quite early on. I like to take a very pragmatic approach to problems in life and without overthinking too much, I always like to be mindful of the potential path ahead and this was something I prepared myself for.
After repeated cholangitis/sepsis, an operation to refurbish my Roux Loop, it became apparent in late 2024 that things weren’t going the way we hoped. Going into 2025 I was really struggling and after continued worsening of my liver function and an increased frequency in admissions, the conversation with the team at Leeds about a second re-graft was had.
To be honest, this didn’t phase me in the slightest as I could see this as my way out. Another chance at getting back to a certain level of wellness. There would be hoops to jump through to get me there and a re-assessment awaited but from here it was destination transplant list all over again. There were concerns about the complexity of a third transplant, due to my plumbing and previous surgeries, however in April I was accepted onto the transplant list for the third time.
After several months of repeated infections, antibiotic resistance and eventually a need for daily IV antibiotics at home, the call finally came in July. Unfortunately, the donor organ was deemed unsuitable at the 11th hour, and the transplant was cancelled. I’d had a false alarm with my first transplant and was always of the mindset that it wouldn’t happen until I was physically in theatre but after the excitement, the next couple of days was a big comedown.
Two days later, I became unwell again and was blue lighted into my local hospital with sepsis. The team there transferred me straight to Leeds and I spent another week being treated before I was discharged back into the community. The game changer this time was that my transplant benefit score had skyrocketed as my Bilirubin was so elevated and my kidneys were starting to suffer. Less than 1 week later, at 4am in the morning, I received my second call, and this was to be the one.
Surgery went well and I was in ICU within 6 hours and on the ward just 24 hours later. The team said it was a difficult operation due to scar tissue and adhesions but were happy with the donor organ and the procedure had gone well. I was up and about that same day and went home after 7 days in hospital to start my recovery.
What Organ Donation means to me
Organ donation has saved my life. Simple.
Had it not been for the generosity of three strangers and their families, I would not be here today. My Daughter would have lost her father at a young age, my son would not have been born, and my wife would have been a widow very early into our married life. The selfless acts of organ donors give people like me another chance.
Suffering from incurable autoimmune diseases like PSC brings pain and suffering without a clear cause, but the donor organs we receive give us hope and precious time.
My story isn’t exactly typical, and I know plenty of people with PSC don’t ever need a transplant or just have one transplant, going on to live a full life, however if it weren’t for those donors and their families having the conversation, my story would be very different indeed.
What does the future hold?
The last few years have been extremely difficult and have taken me to the absolute limit, both physically and mentally. From here I plan to invest time into my recovery to set me up for the rest of my life, also making up for lost time having fun and creating memories with my family and friends.
I’m under no illusion that things will be plain sailing as there are always bumps in the road and living with chronic illness (I also suffer from Ulcerative Colitis) brings many challenges, but I will do everything in my power to give myself the best chance of managing this moving forward.
I hope to return to work in the new year and look forward to being able to contribute as I know I can and fulfil my potential. I also hope to help raise more funds and awareness for PSC Support as I feel very strongly about helping ensure that future generations don’t have to go through what my family and I have over the last 10 years. A future where PSC has treatments and eventually a cure is something I am desperate to see and with the continued research, medical enhancements and the AI revolution, this will hopefully become a reality.
Thank you Tom for sharing this journey in support of Organ Donation Week.
Register your decision, talk to loved ones, and read the real-life stories of the impact of organ donation.
