Alex, who is 22, has biliary atresia. He had a successful Kasai procedure when he was seven weeks old and as a child, didn’t give much thought to his liver condition.
Caption: Alex featured on the front cover of CLDF’s Delivery Easter Extra in 1999
Up until I was about 14, I had very few hospital admissions but after that they were fairly frequent and regular. I’m lucky to have a supportive family and that is truly very helpful in dealing with those difficult times. I also think your attitude towards this situation helps – being able to monitor your thoughts; being able to recognise unhelpful thoughts and guide yourself towards more positive ones. Most of the time in hospital you are unwell so are limited in what you can do, which I find makes it a very mental ordeal and as I was spending a lot of time “in my head” (so to speak), I found it important to keep my mind in shape.
The main way my liver condition affected me was with infections, so I had to deal with flare ups rather than day to day interferences. Earlier in my life I didn’t particularly feel restricted by it but, as I grew older, I started having to plan around it with regards to holidays and what kind of work I was doing. Thankfully, it’s never been an issue socially, all my friends have been understanding about it. The biggest disruption I had was the medical leave I took from university after being put on the transplant list when I was 19.
CLDF has always been there. I remember enjoying the trips to Drayton Manor with other children and doing fundraisers at school and clubs I was part of. As a teenager, I took part in Closer to the Edge (now Breakaway) and that was great fun. Although being the only person I knew with a liver condition had never particularly bothered me, it is comforting meeting people in similar positions. In fact this particularly helped as my condition progressed. Most of the time I’ve spent in hospitals I’ve been surrounded by people who are roughly four times my age and that certainly made me feel more lonely whilst in hospital, so knowing there were people “like me” going through it helped.
I’m fortunate in that the recovery from my transplant last year has gone really well, I’ve had no serious problems and I’m as healthy as I could hope to be really. I’m now back at university after a break of two years.
Advice wise, I know it sounds cheesy and a cliché but an ability to be aware of your thoughts and focusing on the positive aspects of your life – no matter how bleak your situation seems at first – has certainly helped me immensely and I believe it can also help others. With relation to post transplant recovery, you’ll find yourself with a lot of time on your hands and I’d recommend setting a routine and finding activities to fill your day. Even if the routine includes tasks as simple as washing and eating, any kind of regularity will help. If you have a hobby, it can be a good time to focus on that, I’ve spent a lot of my recovery practising guitar as a way to pass time. Obviously, some days even basic tasks can seem insurmountable and that’s okay but endeavouring to stay active as possible proved beneficial to me.
Aside from that, if you are struggling, don’t feel like it’s a task you have to take on alone or feel ashamed that you are finding it difficult. There is support out there for you so take it!
Alex’s parents have been supporters of CLDF ever since his diagnosis and his mum, Chris, says the reason is simple:
We really wanted others in our position to have the same support we’ve received. It’s been so important to us over the years and we want this help to continue to be there for all families of children with liver disease.
CLDF were there right from the start when the families officer visited us on Mountbatten ward in King’s when Alex was just seven weeks old having his kasai operation. It had all been a bit of a whirlwind and the info from CLDF was invaluable – just knowing there was somebody who had information was a big support. And CLDF being there to answer questions when you didn’t want to ask the medical team again because they’re so busy and you’d forgotten what you’d been told as there’s so much to take in, it was a real rock for us.
As Alex got older, we found that the conferences were wonderful for us to gain the latest info from medical professionals and to share experiences with other families who really understood in a way that friends and family can’t. They were great for Alex and also his sister to have fun at Drayton Manor and to know that there were others who were going through the same thing.
My advice to any parent of a newly diagnosed child is that it might not seem like it from where you are at the moment, but there will be good days and you will be able to cope. Things that can seem really daunting and frightening at the start such as hospital stays, blood tests, and scans, become easier in a way and handling them will become second nature. There will always be things that crop up that you weren’t expecting but your experience will really help you with them and handling the impact on your family or other children. Of course you’ll never stop being frightened for your child so always ask for help. Use CLDF and it’s good to accept offers of help when they’re given – looking back I think we turned down too many in trying to do it all ourselves.
As they get older, listen to your child, take it at their pace and try to focus on the positive stories – CLDF are really good here with their Talk Tell Transform videos which are so inspirational. I now think of CLDF support as a sort of safety net. Alex didn’t take part in so many events as he got older but I think just knowing that there was somewhere he could go to share thoughts with others in the same place if he wanted to brings a sense of security that is really valuable.
Caption: Alex recovering from his liver transplant last year