Don't try and cope alone Although many of our young people are aware that a liver transplant may be somewhere on the horizon, when that thought becomes a reality it can still be a shock. Gracie, 23, believes that talking is the only way to cope. I was diagnosed with portal hypertension as a baby and doctors told my parents that a transplant was a possibility in the future. However, my liver condition didn’t affect me hugely until 2012 when, following an episode of severe dizziness and confusion, I was diagnosed with hepatic encephalopathy. I didn’t have a further episode for two years but when I did (it was like a mini-stroke) Dr McKiernan at Birmingham Children’s Hospital, put me on medication. He explained that though medication would work for a while, in the long term, other options would need to be considered. That time came last December when, after I’d experienced a year of shocking memory problems, my consultant said she was going to speak to a transplant surgeon about going for assessment. For me, this was out of the blue and came as a massive shock. I’m the kind of person who likes to feel in control and the thought of this whole process made me feel powerless and out of control. I panicked and just wanted to shut myself away. It was my mum who suggested talking to CLDF. The charity has been there all my life and when Louise got in touch with me about Hive a couple of years ago, I thought it sounded a great idea and joined up. I’ve loved meeting other people this way and even met my boyfriend Josh through CLDF! So, I took mum’s advice, told Louise all about it and I’m very glad I did. Expressing how you feel to someone else really does help. Louise not only listened but encouraged me to talk to other Hive members. Many of them have been through transplant, so they really understand my worries, but also helped me see that they now have a better life because of it.
Louise has also encouraged me to talk to Zoe, the psychologist at Birmingham, and she has been a great help too. If I didn’t have Louise and the friends I’ve made through CLDF, I wouldn’t feel able to face this. I don’t know what the result of my assessment will be. I might be listed for transplant now or maybe I’ll be reviewed at a future date. But one thing I do know is that I won’t be trying to cope alone.
Support in education With many children starting school or nursery or moving to a new school in the next few weeks, it’s important to feel that your child’s place of education understands their needs. CLDF’s education packs have been designed to support young people up to the age of 18 in any educational setting. As well as providing teachers and support staff with information about childhood liver disease and its implications for the child concerned, there is plenty of practical advice which will benefit both schools and parents. Specific packs are available for England, Scotland, Wales and Northern Ireland. If your child is starting a new school or college and you have not yet received your pack please request one at families@childliverdisease.org. “We had significant input from parents and teachers in putting together the packs and have had very positive feedback,” says CLDF Head of Support, Michelle Wilkins. “We do appreciate that starting school can be an anxious time so would ask parents who have specific concerns to contact us.”
33 Liverlife
