Louis was four days old when doctors diagnosed him with biliary atresia and he had the Kasai procedure eight days later. Since then he has joined a transplant football team, run the London Marathon and is training to be a teacher. Now, as he waits on the liver transplant list, Louis is pushing himself to stay as fit and healthy as possible. Thank you for sharing your story, Louis.
Doctors discovered an abnormality on a scan before I was born but didn’t know what it was. Bloods were taken after my birth and within two or three days a problem with my liver had been identified. My doctors knew it was serious but didn’t know what it was, so I was sent to King’s College Hospital. Just 24 hours later King’s confirmed it was biliary atresia and I had the Kasai procedure at just 12 days old. At that point I was the second youngest person in the world to have had it.
The only comfort my parents could find in my situation was that my dad grew up very near King’s and his brother lived nearby so there was a lot of family support in the area.
I’ve had endoscopies and clinic appointments ever since but had no symptoms and thankfully they only had to do a surgical band on me once. My whole family is really into their sport and keeping fit and eating very well has really helped me over the years. From the age of 13 I was running national and regional cross-country championships, at 14/15 I played for Salisbury City and I played a bit of tennis too. I also ran for my university.
Academically I’ve done OK. I studied philosophy at university and graduated last year and I’m now working full time as a trainee teacher in Spanish and RE. I’ve also been very involved with the Children’s Liver Disease Foundation over the years and done podcasts and blogs for them, as well as running the London Marathon.
I always knew I would need a liver transplant, but was still shocked when my doctors told me
When I was 21 doctors said it was looking increasingly likely that I would need a transplant within the next two years. I had always known it would happen, but when the reality actually hit, it came as a shock. I’m now on the transplant waiting list.
I contacted the London Transplant Football Team to say I would love to play some games with them. I had never met anyone with biliary atresia before outside of a medical environment and never really dreamed it would happen, so it was a bit of a wow moment to be playing with people with my condition. Everyone in the team has had a transplant, and not just livers, so we’re able to sympathise with each other and help each other. It’s good to be involved with them.
If you’ve been diagnosed with a liver condition, be kind to yourself and always remember you’re doing really, really well. Push yourself to stay fit and healthy if you can, but considering everything that people like myself have had to endure medically it’s important to look after your mental health too. Whatever you do make sure it makes you happy.
