Jamie’s story: “If you are waiting for a liver transplant, never give up hope”

Jamie was diagnosed with an enlarged liver when he was just two years old and was ill off and on throughout most of his childhood. It was only when he was 13 that Caroli Disease was diagnosed and he received a liver transplant a year later. Jamie is sharing his story now, aged 44, to show the importance of organ donation. Thank you, Jamie.

My story started when I was just two years old in 1979. My parents were decorating and at some point, they turned to see me with a handful of paints. As a precaution I was taken to the hospital to check in case I had eaten some and thankfully I hadn’t.

However, after examination, the doctor discovered I had an enlarged liver and over the next 10 years I was in and out of various hospitals throughout the North East with no diagnosis. I used to suffer a lot with bloating and my immune system was not good and I regularly got colds etc. My schooling suffered as a result and I couldn’t do regular things with friends like playing football and running about.

My symptoms started on a school camping trip when I was 12 – I felt unwell, then began vomiting what looked like black tar. My parents picked me up and called out the doctor – he prescribed peppermint tablets for indigestion and I still laugh about that to this day. A few days later things took a serious turn. I continued projectile vomiting this black substance – it happened four or five times in the next year and got worse each time. I was rushed to Freeman’s hospital in Newcastle where I was diagnosed and treated for oesophageal varices and put in an induced coma for five or six days to help my recovery.

My mum has since told me how hard the constant worry was for her. I am the oldest of four siblings and when I was ill I used to spend a lot of time at my grandparents so I could have a break from them.

 Finally diagnosed with Caroli Disease

Still undiagnosed, at the age of 13 I was sent to Birmingham Children's Hospital for a few days for tests. There I was finally diagnosed with Caroli disease, a rare genetic condition which thankfully none of my siblings have been affected by. My consultant said my body was simply not strong enough to take any more bleeds and after being told all the potential grim outcomes of a liver transplant, I was put on the transplant list.

Late on February 24th 1992 we received the call to say a full liver was available. I said my goodbyes to the rest of my family and off we went on the roughly four-hour car trip. I was sat in the back with my mother and so scared and could tell she was also, but we both put on a brave face anyway. About 45 minutes from the hospital we were pulled over by the police for speeding, but upon hearing our news they blue-lighted us the rest of the way. As a 13-year-old boy I thought this was great!

I was in hospital for five weeks after my liver transplant because of a bile duct leak

The transplant took place and I was in hospital for around five weeks due to a bile duct leak. The first few years after the transplant were up and down, I had mild rejection a few times but in the end it all worked out. I had a normal life like other kids and could play again and as I got older I started going to the gym regularly and now love cold dips and saunas. They are all great for my body and mind.

Now 31 years post-liver transplant, I am married and have a 14-year-old daughter. We were lucky enough to live in Australia between 2016 and 2022 and have had plenty of amazing holidays abroad.

Everything that happened in my life is all because a mother chose to donate her 11-year-old child’s organs after they tragically died. Without the transplant I most probably would not have made 15 years old and another family would have lost a young son.

 Email from donor's mum 

Around seven years ago I was over the moon to have email contact with my donor’s mum. I will never forget how much I cried when I received that first message from her. I got to know a little about my donor and received a photo of them with her – it was amazing.

My message to those who are waiting or have received a transplant is to never give up hope. Keep as strong and healthy as you can and cherish those around who are with you on this journey.

I’d also ask everyone to please have a chat with their family about their wishes regarding organ donation. I’ve shared my story to hopefully inspire others and show the importance of organ donors – they save lives and their families will always be heroes.


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