Lucy, who is now 32, is a familiar face from CLDF magazines over the years. Here, she tells her story.
Caption: Lucy appeared on the front over of CLDF’s Delivery magazine in 1996
When I was two years old, I was diagnosed with cirrhosis of the liver. It was first noticed during a normal check-up at my local GP surgery, when the doctor felt my liver was slightly enlarged.
I was sent to King’s College Hospital with suspected childhood liver disease. And tests confirmed this was the case. Even though I was still pre-malignant, I was basically a ticking time bomb. The prognosis: I needed a liver transplant to live beyond the age of four.
After an eight-month wait, going back and forth between hospital and home, I was lucky enough to receive a new, healthy liver which previously belonged to a teenager. As I was three and a half, I only received one lobe because of the size difference. I’m told that I was among some of the early split-liver transplants.
Since then, I’ve been on nearly the same medication (with slight variation in dose) for my whole post-transplant life – that’s 28 years.
Having a liver condition is something I’ve grown up with. But it won’t come as a surprise that I only have a few memories from the time I had my transplant. Photos, home videos and my family’s accounts have helped me build up more of a picture in my mind.
I wasn’t really aware of the problem prior to my transplant. I didn’t have many symptoms; I wasn’t jaundiced, and I had bundles of energy. Obviously, I hated having blood tests and cannulas. But the operation was a shock to me.
Being so young, I couldn’t understand why I suddenly felt tired and in pain. And I had a big scar across my stomach. Of course, I suddenly had all of this medicine to take too. My mum was very careful to explain what had happened. She drew the same scar on a doll someone had given to me, so I didn’t feel alone. And the nurses tried to cheer me up with games. But I’m told I refused to eat for a time – I went on hunger strike!
I think that I’m one of the lucky ones – my liver disease didn’t cause me to miss school for long spells. And apart from two operations following my transplant (one because of cholangitis causing a blockage in my stomach and another after contracting lymphoproliferative disease) I didn’t really have long spells in hospital either.
Of course, I had regular check-ups and blood tests. But there weren’t very many complications from age five onwards.
Having said that, I was aware that outpatient appointments meant I would miss a day of school. So, it was always a bit strange returning the next day looking perfectly healthy. I could see confusion in my classmates’ eyes as hospital visits normally mean you’re sick. Some teachers didn’t understand either – one or two of them treated me a bit like a leper. And a swimming teacher suspected it was all a lie to get out of lessons!
I also felt like an outsider when I wasn’t allowed live measles injections (as if you’d want that!) and had to have a painful immunoglobulin injection every time someone in school had chicken pox. But generally, I’m fortunate because none of it disrupted my schooling too much.
My family first became aware of CLDF after my Mum and I appeared on a television appeal with Esther Rantzen, prior to my transplant in 1992. The appeal aimed to raise awareness of the need for organ donors and the fact that liver disease affects children as well as adults.
Catherine Arkley, who was then Chief Executive of CLDF, saw this and contacted my Mum to arrange another TV appearance, with her and Prof Roger Williams on TV AM. I was a typical example of a child needing a transplant and at the time, there was a lot less awareness of childhood organ failure compared to now.
Catherine was so lovely and her work was amazing, especially when you consider what she had gone through. (Catherine’s son Matthew who was born with biliary atresia in 1984, died aged nine months, before he was able to have a liver transplant).
I’m really grateful to CLDF for the support they have provided over the years. Growing up, my family attended the AGM many times. My Mum would stay for the conferences while my siblings and I would enjoy going to Drayton Manor Theme Park (along with my Dad who also loves theme park rides!)
And a few years ago, I was part of the conference myself when I gave a talk on my experience of growing up as a transplantee.
Through CLDF, I’ve been involved in other publicity events; a school TV programme (in which aged twelve, I interviewed Nigel Heaton) a biology book featuring me as a case study, and of course I’ve been in the magazine a few times. I’ve also made friends through the charity.
Having a liver transplant has meant I’ve been able to live another 28 years. That’s something I am always grateful for. And I have nothing but respect and gratitude for my donor and their family. I think it’s important to say that.
But of course, it hasn’t always been plain sailing. Growing up, I found it quite difficult to accept my gift. Feeling guilty. And unworthy. I know from chatting with other transplantees, they’ve experienced the same feelings. And being discouraged from activities like swimming, partying with friends and school trips because of my medication only fuels feelings of exclusion and loneliness, especially when you’re a teenager.
I lost a few friends I made in hospital during the early years. That sadness is hard to interpret and process at such a young age. And it doesn’t get much easier – I’ve lost some transplant friends since being an adult too. The friends I have lost are often in my thoughts. But this only encourages me to keep living my life as best I can and enjoy it as much as possible.
It’s pretty apt to be writing this right now considering the impact we’ve seen with Covid-19. I followed NHS advice and shielded for several months and I’m still being careful. But thankfully, that hasn’t meant I’m restricted in doing my job because I’m able to work from home.
There’s been loads of positive impacts for me. For eleven years, I took part in the British transplant games (and three times in the World Winter games). I’ve made a lot of friends through this and was proud to represent my hospital as a success story.
At the beginning of lockdown, I started a new job as a copywriter for a marketing agency. It’s a dream job for me as I’ve always been a passionate writer and I love being creative.
I live in Newbury now and I’m married to my best friend, James. We met at sixth form and both went to the University of Reading. I love doing pub quizzes, I’m an avid film and music fan, and I volunteer at our local Corn Exchange theatre as a steward. I’m lucky because I’ve got a good friends-network around me. And I’m part of a big family and enjoy seeing them whenever I can. There’s been a major increase in video calls in the past few months! We also got a cat at the beginning of lockdown – a ginger tom called Kovu. He’s provided some much-needed entertainment while we’ve been staying safe at home!
My health is good (touch wood!) and I only have a bi-annual check-up now. I’ve developed osteopenia as a long-term result of my medication which I take calcium supplements for. But this hasn’t stopped me from doing a few 10k races.
So, here’s what I’ve learnt; like any major operation, having a transplant so young does mean you face adversities and sadness – possibly before you’re mature enough to deal with them. But, it also means you’re a little wiser and appreciate life more, the older you get. Restrictions are part of the package. But the package is well worth it!
Caption: Lucy today