Stuart’s Story: Celebrating 30 Years of the Organ Donation Register

For 30 years, the NHS Organ Donor Register has been changing and saving lives, offering hope to those facing life-threatening conditions. In this heartfelt story, we follow Stuart's incredible journey, whose life was transformed by a liver transplant after years of battling illness. His story highlights the emotional and physical challenges of the transplant process while emphasising the life-changing impact of organ donation. As we celebrate this milestone, it’s more important than ever to consider the gift of life. Your decision to become an organ donor could be the best thing you do today — saving lives just like Stuart’s.

Can you tell us a bit about your background and the circumstances that led to you needing an organ transplant?

Before my diagnosis, I was a healthy, happy child, but around the age of 10, I started to lose a lot of weight very quickly and was not able to eat without vomiting. After many blood tests, I was admitted to the hospital for further investigation.

I was diagnosed with Autoimmune Hepatitis at the age of 11; I became very ill, and paediatric hepatology (liver) care was very much in its infancy in Northern Ireland back in the early 1990s. I was flown by air ambulance in a light aircraft to Kings College Hospital (KCH) in London, where I was put on many medications. As a child, it was challenging to start having to take tablets overnight. The medications lowered my immune system, so I became more prone to infection. My condition stabilised, and I was able to return home and go back to school after several months. 

I was closely monitored, and as the years progressed, I could carry on at school, but I tired very quickly. Because of this, I couldn’t do all the things a regular kid could do. I wasn’t allowed to take part in rugby at school as a side effect of Autoimmune Hepatitis in having an enlarged spleen, so high-contact sports would risk rupturing it. There was a draining annual trip to KCH in London every year.

At 16, I was told I would need a transplant within the next 18 months, and I remember vividly describing one of the professors in Kings that they were wrong (the innocence, naivety and determination of youth). I completed several of my GCSEs in the hospital (against medical advice) as I took peritonitis near the end of my GCSE exams.   

What was your initial reaction when you found out that you needed an organ transplant?

I was able to complete my A Level and university without too much of my illness getting in the way. However, in late 2007, I kept taking infections and was told it was time that I needed a liver transplant. There were a range of emotions. I had worked hard to get to where I was, and there was a good chance I wouldn’t. I was angry and worried about the impact this would have on my family. They had already been through so much because of me, and it seemed unfair on them. 

How did you feel when you were placed on the organ donor waiting list? Were there moments of fear or hope during that time?

In late 2007, I was admitted to the Royal Victoria Hospital (RVH) in Belfast to start the process of going through the evaluation of being placed on the donor waiting list. I had to have multiple tests both in Belfast and London to ensure that I would survive. In this period, I became ill and spent most of 2008 in hospital in ward 6D. This is a specialised hepatology ward, and the staff there are excellent. They are trained in getting patients prepped physically and psychologically for transplantation. Honestly, I had accepted my fate, made peace with the world and was ready for the end.

However, in September 2008, I was flown by air ambulance to KCH to be placed on the priority list. 

Can you describe the day you found out that a donor match was found for you? What was going through your mind?

I became even more ill in London as I went through end-stage liver failure; I gained much fluid and could no longer walk or get out of bed. I slept most of the time and could barely eat anything. Then, one night around 9 pm, a consultant came into the room to say they had found a match and surgery was scheduled for just after midnight. A quick x-ray of the chest was required to make sure I had no fluid in the lungs for surgery. I remember signing the consent form with my Mum and calling my then-girlfriend, knowing there was a chance this would be the last time I spoke/saw them. 

How did the organ transplant process change your life physically, emotionally, or mentally?

Within a few months, I was able to do all the things I had been doing before I became ill in 2007. Emotionally, it can be difficult at the start, knowing that someone had to pass away so that you could have a fresh start. There were strong feelings of ‘why me?’ and I felt I had to ‘do something with my life’ to justify it, which, in reflection, was incorrect. Someone had chosen to donate regardless of this. 

What was the recovery process like for you, and how did your life evolve post-transplant?

The team in Kings had me up walking using a walking frame within 48 hours of the surgery. There was constant monitoring for four days before I was allowed to fly back to Belfast. For several months, I wasn’t allowed to drive. My immune system was lowered drastically to prevent rejection of the new liver, so I wasn't allowed to even go to the supermarket as that was deemed a crowded space with a high risk of infection. 

After six months, I returned to pre-2007 normality, although I still tire easily. In 2009, I went back to university again. 

How has receiving an organ impacted your life, career, or relationships?

With everything I do, I always have in the back of my mind how much this will tire me out. Do I have any energy in reserve to do this? As I’ve gotten older with more responsibilities, I have to make sure my family is protected should the worst happen and I become ill again. I can’t get life/critical illness insurance, so I am always mindful that there’s something in reserve should I become unwell again.

Being at PlotBox, I can make use of the death-in-service policy. While I hope I never need it, knowing my family will be looked after has been a massive weight off my mind. 

Also, during the pandemic, both my family and I were pretty much housebound for 18 months until the vaccine rollout, as I was deemed high risk. PlotBox was great to me as I was told to work from home weeks before the lockdown, and they recognised the danger to me. 

Has the experience changed your perspective on life or how you approach everyday challenges?

The whole experience has made me a planner of my time due to energy. I would like to know what my week will look like so I can plan to rest. I still struggle to commit to things long in advance as I’m always worried I’ll be ill or unable to do them. I have an understanding family and friend group that knows why I can’t make it sometimes. 

Were you aware of organ donation before your transplant experience? What are your thoughts on it now?

I remember seeing my Mum's organ donation card when she was using her purse one day as a small child. When I asked her what it was, she told me. Being an organ donor is one of the most selfless things a person can do. 

What would you say to someone considering becoming an organ donor but may have reservations?

I fully understand people's hesitation in becoming organ donors. Questions like what will happen to me, how will this impact my family, etc. I recommend that people read about the phenomenal impact that becoming a donor will have on the lives of really ill people who could have a new lease on life. Also, we never know what’s around the corner; you never know you could be in the same position as those on the donor waiting list. 

What message do you have for those who are waiting on a transplant or considering donating organs in the future?

For those currently waiting, I encourage you to hang in there. The days may be long, painful, and emotionally draining, but there may be light at the end of the tunnel. There are many great support groups for those awaiting transplantation and to help you recover post-transplant. The RVH Liver Support group was great for me in both journey stages. I recommend you speak with your doctors, as they will know the most appropriate support groups for your condition. 

If you are considering joining the organ donation register, tell your family of your wishes, as if they have any reservations, your wish to donate may not happen. Remember, your donation has the potential to save up to nine lives (and their families) who are currently going through an awful struggle. We recipients are truly humbled and thankful for your donation; it's one of the greatest gifts anyone can receive. 

For more information on Organ Donation Week or if you would like to sign up and help someone like Stuart, please click the link here