Twenty years ago, I had my liver transplant, but my story began when I was just 10 weeks old.
My parents first took me to the doctor because I had jaundice, was constantly vomiting and wasn’t putting on weight. I was referred to hospital, where I was diagnosed with alpha-1 antitrypsin deficiency, a genetic condition in which the body doesn’t produce enough of the alpha-1 protein that protects the liver from damage.
For a long time after my diagnosis, my condition was relatively stable and didn’t hugely affect my day-to-day life. But everything changed when I became seriously unwell with spontaneous bacterial peritonitis at eight years old, which resulted in me being put on the transplant waiting list. There were three hospital trips when the donor wasn’t a match, and on the fourth call we finally got the news we had been hoping for. In the end, I was on the waiting list for 12 months and had my transplant when I was nine.
I spent three weeks in hospital afterwards. Because I was young, I don’t remember much about the experience. I do remember some painful injections and feeling upset at the size of my scar at first, but over time it became part of me, and now I hardly notice it. Other than that, most of the memories I have from that time are positive and often funny. I remember the night my dad spun me around the ward in my wheelchair late at night because I was really craving a cheese string. News spread among the nurses during their handover the next morning, and we were the talk of the ward! We also spent a lot of time playing Boggle, a game I loved, and even now, whenever I see it, it reminds me of my time in hospital.
When I was discharged from hospital and back home, I was off school for three months, but they sent my work home so I could keep up. My classmates also sent me handwritten letters while I was off, which meant a lot to me. I still have them and read them from time to time. For the rest of my education, my liver condition didn’t have a major impact. At university, I had to manage my medication and health on my own for the first time, which was a new challenge, but I grew into it. I wrote a blog about that experience here:
I was fortunate to have a relatively smooth recovery with few complications. I’ve been able to take part in the Transplant Games, attend a ski camp in Anzère called Tackers, and even have a wish granted by Make-A-Wish to meet my then-favourite boy band, JLS.
In many ways, my transplant gave me more opportunities than it took from me. I am very aware that I have been incredibly lucky and that many people face far more complex and challenging journeys. But there are also many things I would never have experienced without my transplant, and I don’t take that for granted.
Another of those opportunities was volunteering for CLDF for many years. I wrote blogs, was a Hive Ambassador and supported with social media analytics. Through my volunteering, I was kindly gifted a stay with Room to Reward, and my best friend and I enjoyed a weekend in Edinburgh. We had a lovely time, and I was so grateful to have been recognised.
In January this year, we marked 20 years since my transplant.
Today, my health is good. I have check-ups every six months, sometimes by phone and sometimes in Leeds, and I still take immunosuppressants daily. They will always be part of my life, but they are such a normal part of my routine that I don’t think twice about taking them.
I try to look after myself physically and mentally, particularly through walking. My sister and I are about to go on our second walking holiday together. Last year we explored Jersey, and this year we are heading to the Isle of Man. I love being outdoors and surrounded by nature. I also play badminton, have recently started running again and occasionally go to line dancing classes.
I also work in communications at Young Lives vs Cancer. Although my condition was not cancer, I relate deeply to many of the themes the charity addresses through its work, including navigating childhood illness and the uncertainty it brings for the whole family.
When I’m not doing that, or any of my other activities, I am usually travelling and spending time with friends. I was also lucky enough to see Taylor Swift on her Eras Tour, which is a highlight of the last few years.
I didn’t really talk about my transplant much when I was younger, and I still don’t now. Not because I’m ashamed or embarrassed of it, but because it has become such a normal part of my life that I often just forget to mention it. When I do, people often say, “I’ve never met anyone who has had a transplant before.”
If I could offer one piece of advice to young people at any stage of their journey, it would be this:
Try to focus on the positives. I know that isn’t always easy, and there will be difficult days, but this chapter is just one part of your story, not the whole story.
There is life beyond hospital walls, beyond appointments and beyond the hard times. And when you feel ready, say yes to the opportunities that come your way. There are many things I haven’t mentioned that were offered to me and that I now wish I had said yes to. But there is also so much I did say yes to, and so much I have been able to do, that when I reflect on my journey, it is the good moments that stand out the most.
And I truly believe there can be many of those moments ahead for any of you reading this.
