In this blog, I wanted to write about life after my liver transplant, addressing things from dealing with the immediate aftermath to the following 14 years of my life right up until this very moment (albeit having to cut a very long story short).
As some of you may already know, I had a liver transplant when I was 9 years old because I had alpha-1 antitrypsin deficiency. After being on the waiting list for what felt like forever, on Sunday the 29th of January 2006 (which I still can’t quite believe is 14 years ago now) I finally had my transplant. The 23 year old me now realises this is something you’d assume would be quite scary for a 9-year-old but looking back, I seemed quite unfazed by the whole situation and I took it in my stride like I did most things. And yes, I’m aware that doesn’t sound totally normal for a 9-year-old preparing to have a major life-changing operation. But on that date, after an 8-hour operation and an agonising wait for my parents, my post-transplant life began. Of course, this has come with its lows but there have also been so many amazing highs and I think the main message I would like to put across through writing this blog is that even when going through the hardest times, there is always a silver lining. In the famous words of Albus Dumbledore, ‘happiness can be found in the darkest of places, if one only remembers to turn on the light’.
The journey started with the three to four-week stay in hospital. More specifically, in intensive care. The first of only a couple of things that I remember about my stay in intensive care is a nurse trying to stop the nasal cannula from falling out of my nose (that fiddly oxygen tube that goes up your nose) while I was being pushed somewhere on my bed. The fact I was moving at the same time probably explained why she couldn’t get it to stay in. The other thing I remember is not being able to eat anything and the nurse who was keeping an eye on me sat at the end of my bed eating a sandwich. The rest is all a blur to be completely honest, but I was there until I got moved back to the ward.
When reflecting on my time staying on the ward, I notice that what I remember most vividly are actually quite happy memories. I cannot thank my doctors and nurses enough because they truly were amazing to me and they turned what, realistically, wasn’t a great situation into the best it could be. Some of my favourite memories have been when we were in the middle of a game of ‘butthead’ (Google it – you basically throw balls at whoever has the hat on and try to get as many to stick as possible) when a doctor or nurse would walk in and someone would be wearing a bright pink velcro hat with balls stuck to their head. They must have thought, ‘what on earth have I just walked into?’. Another of my favourite memories is when I got really hungry in the middle of the night (when I could finally eat again) and my dad put me in my wheelchair and ran up and down the ward in the dark doing tricks and wheelies all just to get a cheese string. We were the talk of the ward the next day I’ll tell you that for sure. Once I could eat again, as well as cheese strings, I basically lived on this weird sweet thing called brain lickers (Google them too – it’s basically just liquid but that way I could eat without, well, eating). They were pretty good actually but now they just remind me of being in the hospital.
Obviously there were quite a few low times whilst I was on the ward and as much as I want this blog to remind you that there is light at the end of the tunnel, I still want it to be realistic. It wasn’t all sunshine and rainbows no matter how much I put on a brave face. I think one of the things that I found the hardest was trying to get up and about again because it was extremely painful. I had physiotherapists and although 23 year old me now knows they were just doing their job, I used to feel like crying (and often did) when they came to get me out of bed even though I only had to move from my bed to the chair a couple of centimetres away. Some of the medications I had to take were quite nasty too. Three weeks of happy times, funny times and quite hard times came to end quite quickly though, and I was soon ready to go home. I think most would assume this would be an exciting time, but to be honest, it was quite scary leaving the safety of the hospital.
After my stay on the ward was over, it was time to start coming to terms with the fact that I had to begin to deal with a lot of new changes. I would be off school for a few months but unfortunately for me, they still sent me some work home. I will never forget that project I did on the Aztecs. Despite the fact that they sent me work, which I suppose I will forgive them for, my school was great while I was in the hospital and at home recovering. They sent me a cute teddy and at times the whole class would write me letters and send them to me. This helped a lot with missing my friends. When I returned to school though I was still away once a week to go for a check-up at the hospital. Luckily, and I’m aware this isn’t the same for everyone, I had relatively few complications after my transplant. One thing that I did have to get used to, however, was my new scar. I struggled with it for a few years and when I say a few years, I truly mean it. I used to feel like it was something that made me ugly and that others would find ugly too, something that would change their opinion of me. I can honestly say that isn’t the case now though and not only have I learnt to embrace it as something that is just a positive reminder of what I have overcome but it has zero impact on my relationship. I guess what I’m trying to say is that if you struggle with accepting your scar like I used to, with time it will become easier and it won’t change anyone’s opinion of you.
I meant it when I said that I had to cut a long story very short but I feel like I’ve covered some of the most prominent memories and feelings surrounding this time of my life and the years following. I wanted to sum up by saying that I have done so many great things as a result of my transplant. I have been part of Make-A-Wish, I went to Tackers (a skiing holiday in Switzerland) and I took part in the Transplant Games. I did this for about four years and I was even invited to the World Transplant Games in Australia too, although I turned it down. I have been able to volunteer for Children’s Liver Disease too which I find extremely rewarding. What I’ve enjoyed the most though is meeting and becoming friends with some of the most inspirational people I’ve ever met and while some may think that I have been unlucky having to have a liver transplant, I like to remember that all of these incredible opportunities wouldn’t have ever happened without it. I wouldn’t be where I am now without the generosity of my donor and their family and the kindness of my doctors and nurses. To be honest, in the grand scheme of things, having a transplant has had much more of a positive impact on my life than negative. Of course, life would have been easier if I just wasn’t ill at all but that’s just life and I’m proud of what I have overcome. I live a pretty normal, happy and healthy life now despite the daily medication, which is so normal to me and I have managed to complete two degrees, which I am extremely proud of.
Lovely. My daughter just had a transplant. Turned nine just as she left the hospital. Pleased you’re doing well.