Stay strong

Stay strong - it will be fine

Moving to adult services can be a cause of concern for many young people, even more so if it has to

happen during a global pandemic, but Oliver’s advice is to keep calm and carry on. I have Alagilles and had a liver transplant when I was nine months old. Unfortunately, over the past five years my liver began to fail. My hospital stays were longer and more frequent and in October last year I was put back on the transplant list. Although I had been going to Birmingham Children’s Hospital all my life, the doctors explained that because of my age and size (I’m now 21), the transplant would need to take place at the Queen Elizabeth hospital. I know that moving from the familiarity of children’s services worries a lot of people but, to be honest, I was so fed up of feeling so ill all the time, I really didn’t mind. I was actually in the QE in February, being treated for cholangitis, when I received the good news that a liver had become available. With all the restrictions in place, I knew that the surgery was something I would have to go through pretty much on my own. My parents were allowed a short visit beforehand but not allowed to stay until I went down to theatre as they would have at the Children’s Hospital. By this time, however, I was used to being in hospital on my own, so it wasn’t that daunting and the staff on the liver ward were really nice. I spent my time face-timing family and friends and keeping in touch with my CLDF friends through Hive +. I knew that they would understand my situation and that some of them may have to go through the same experience one day, so thought I would tell them what it’s like. After the operation I did have one complication, a bile leak which meant I stayed in hospital for three weeks. I think, though, that when you are facing a transplant, you have to prepare yourself for the fact that there might be complications. Just as before, I was in regular contact with the other people on Hive + . They were keen to know what was going on and sent me lots of supportive messages. Now five months on, I m’ feeling so much better. I have more energy each day and I’m doing online courses so that I can pick up my education again and hopefully gain a place at university. To anyone facing my situation I would just say ‘prepare yourself, stay strong and be resilient’ . You expect it to be bad, but it won’t be as bad as you think – and keep in touch with your CLDF community – it will help them and help you!