"I could hear people saying ‘Look at that lad how yellow he is’. I even had one lady walk past me then come back to have a second look. I felt so self-conscious"

Like many of our young people, Kieran underwent a liver transplant when he was very young and has no memory of the experience. So we’re very grateful to him for his honest account of his second transplant which took place earlier this year. 

I was born with biliary atresia and had to have a liver transplant when I was 11 months old. This must have been a tough time for my parents but obviously I have no recall of any of it. It was something I was aware of growing up, but I would say I had a completely normal childhood. 

I missed a bit of school due to hospital admissions or annual appointments. My biopsies were a three-day admission but that was only every five years, so my liver condition didn’t really impact on my education or cause me to feel particularly ‘different’.   

I remember having to have regular endoscopies at Birmingham Children’s Hospital because of my varices and I do recall Professor Kelly telling me when I was around 15 or 16 that I would definitely need another transplant at some point, but to be honest I didn’t really think about it. In due course my care transitioned from the Children’s Hospital to the Birmingham’s Queen Elizabeth hospital, and I continued with my regular appointments there.  

It was in 2023 that I was told that the time had come for me to go on the transplant list and despite the fact I had been told about this years before, this still came as a shock. I felt really scared of what was going to happen and how it would impact my life. I didn’t want to discuss it with my parents as I knew they must be feeling upset about it too, so I stayed in my room a lot with my own thoughts. Luckily my mum managed to get through to me so I could open up about how I was feeling.  

Over the next couple of years, it became clear that my liver was deteriorating. I developed ascites which was so bad that none of my clothes fitted me, I couldn’t walk or put any shoes and socks on, and I was also extremely tired so slept a lot.

In February this year, I developed jaundice and after a few days at my local hospital in Leighton, I was transferred by ambulance to the liver unit at the QE in Birmingham. It was there where I began to realise how bad my jaundice must be. I went outside for some air and felt uncomfortable as everyone was staring at me. I could hear people saying ‘Look at that lad how yellow he is’. I even had one lady walk past me then come back to have a second look. I felt so self-conscious and couldn’t wait to get back to my bed.

Doctors explained that I would have to stay at the QE until my transplant and I was so fortunate that it was a matter of weeks before a suitable donor liver was found and the surgery could go ahead.  I was lucky that my mum and dad were able to stay in Birmingham the whole time I was in hospital. They had to leave me in the evenings, but I knew they weren’t too far away if I needed them (which I did after my transplant as I have to admit I felt terrified).  

My sister also came to visit as well as my grandad, uncle and family friends. This meant the world to me, even though I now know that one of my friends was really upset to see me so poorly in Intensive Care. 

I’m so fortunate that the transplant was a success and I’ll be forever grateful to my donor family. I stayed in ICU for about three weeks in total where I had one-to-one fantastic nursing care. My kidneys took a huge hit and were only working at 17% so I had to have dialysis a few times which was scary, plus a few blood transfusions.  

It had been so long that I’d been able to walk unaided that after the transplant I needed help and always had someone by my side in case I fell. It was probably about 10 days before I felt comfortable to walk on my own but that was only a short distance. I couldn’t walk upstairs for a good few weeks after and even then, someone would be behind me.  

After five weeks, I was well enough to leave hospital and I’m now building up my strength at home. I feel so much better now and being able to put my trainers on is great! However, I know this might be a long road as I still get tired and breathless and don’t feel confident about going too far from home in case anything happens. 

Before my liver deteriorated, I worked in industrial pallet racking.  This is a very physical job and I’m not strong enough to do that yet. I worked away from home too, which I’m not confident doing at present. However, I really enjoyed my job and look forward to returning as soon as I feel up to it. 

At the moment I’m still processing everything that has happened to me over the past few years as it has really hit me how close I came to dying. However, my family, friends and even people I have met on TikTok have been incredibly supportive and that has been a real help.  

I knew nothing about being on the waiting list for my first transplant but to be in your 20s and waiting, you really do feel like your life is on hold. You can’t plan for your future – your life is dominated by hospital appointments. The waiting is the hard part – I was on the list for nearly three years, but I had to get on with my life the best I could. 

So, for anyone else in this situation I would say keep going, you can do this. Yes, it’s a long and hard wait but it’s so worth it to be given another chance at life. Talk to your loved ones as they are going through it as well, and don’t feel scared to open up about your feelings. 

I’m feel very lucky to have been given another chance by my amazing donor and  their family. If it wasn’t for them, I would not be telling you my story and I will be forever grateful.

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