I can’t imagine what my parents went through

When Lisa was three years old, she suffered acute liver failure and was given a life-saving liver transplant at Birmingham Children’s Hospital. Last year, she underwent a second liver transplant at the Royal Free Hospital in London and is now back at work and living life to the full. Thank you Lisa for sharing your story with us.  

I must confess I have only two memories of being in hospital for my first liver transplant. I remember sitting in a circle and playing with other children on the ward and also riding a trike up and down. And that’s it! Which I think is probably a good thing as those are good memories.

I do recall that while I was at primary school, I had to go to Birmingham Children’s Hospital at least every three to six months for check- ups. But I don’t remember thinking much about it – I just accepted it. It was my teenage years that were probably the most impactful. I rebelled, I didn’t want to take my medication and I wanted to be out with my friends all the time. Having to pack meds as a 14 year old for sleepovers was a pain, but in hindsight not the end of the world. In terms of my health, I wasn’t more sick than your average young person. Although I did suffer from ear infections quite a bit. I also remember getting pneumonia once and it completely wiped me.

Although my liver condition was a nuisance to me at that time, it wasn’t something I ever worried about. My parents made my life as normal as possible and I grew up just like any other kid doing normal things. That’s a credit to them to be honest.

One issue which did pop up at one of my appointments was the question of whether I would be able to have children. It was all a bit of an unknown then and I remember feeling like a choice was being taken away from me which I hadn’t experienced before. When I was an adult and wanted to explore it more, I met with a midwifery consultant who put my mind at rest completely and also explained that the medication I was on was fine to use in pregnancy and breast feeding.

I am now mum to a beautiful eight year old girl and also have a stepson and daughter and I cannot even begin to imagine what my parents went through when they were my age with me. I don’t feel old enough to cope with something so life changing!

The 30th anniversary of my transplant seemed like a good opportunity to give something back to two very important charities: CLDF were a huge help to my parents during my transplant period, putting them in touch with other families going through the same thing and providing lots of information. And British Liver Trust is the charity I go to now for more information about my current condition and I love their on the road liver screening programme!

So I came up with the idea of a garden party which started off as a small idea but just grew and grew. It was huge amount of work, but really fun at the same time. I was amazed at how generous people were with their donations. I thought having a target of £500 would be a challenge so to hit over £3.5k was just astounding and so humbling.

 

It was around this time, however, that I was diagnosed with liver cirrhosis. I was closely monitored by my local hospital in Cardiff but a year later I developed hepatic encephalopathy, a type of brain dysfunction occurring in people with advanced liver disease. My deteriorating health meant I had to temporarily give up my job in communications and business management for a global media organisation which was tough, as I love my job.

In January of last year I was placed on the transplant list and in the summer we got the call that a suitable liver had become available. My husband, Mike, drove me through the night to the Royal Free where I underwent my second transplant. I’m so fortunate that, again, it was a complete success. Within a couple of days I felt like a changed woman. My jaundice had gone, as had all the broke capillaries on my chest and arms. I remember looking in the mirror and not recognising myself!

My blood tests initially showed that my new liver was being rejected but I was put on theraputic plasma exchange and after 16 days was able to go home. I’m so grateful to all the doctors and nurses who looked after me and of course to my donor family. Without people agreeing to be donors and making their feelings known to their loved ones in event of their death, people like me wouldn’t be here. My life has been saved twice over by my liver transplant donors, and also by blood donors. I’m eternally grateful and I would urge people to do what they can.

Since last summer, I’ve been lucky to go from strength to strength.  I’m back at work which is great after being off for nearly 18 months and I’m going out having fun with my family and friends. Even holding a conversation is something I really appreciate. Before the transplant my voice had become slurry and I was very forgetful. And I was so fatigued that I would take my daughter to school and then sleep for several hours immediately afterwards.

We went to Dubai in February as a family and it was such a brilliant holiday – to be able to fully engage with everything and enjoy the experience to the full isn’t something I would have been able to do before. I’m living life again, making memories with my loved ones and I’m so grateful for that.

 

To any young person who is growing up having been through liver transplant, I would say – live life like your just another teenager. Those days don’t last for long and they will hold your lasting and some of the most treasured memories. Also listen to your consultants… they really do know best! Although you might think you know yourself better as a teenager, they’re just trying to look after you for the foreseeable future so pay attention at appointments!