Andrew’s Story
I still feel like a child. I’m not ready to accept that in 4 months I will have to leave university, find an adult job, get an adult house and do boring adult things like pay bills and watch period dramas on Channel 4. I recently turned the grand old age of 21 which means I can legally adopt a child and own a pilot’s licence for a plane, neither of which are top of my priority list. However, one thing that turning 21 does mean is that I now have no excuse not to be an adult. Between the ages of 18 and 21 I was still trying desperately to cling on to being young by justifying a night in with a Disney movie and a onesie was a productive and efficient form of fun. Although my views on this kind of night in are still strong, I do now have to accept that I am growing up and this brings its own unique challenges and joys.
I was born with a rare congenital heart defect called Hypoplastic Left Heart Syndrome, which basically means that the left side of my heart didn’t develop properly and so only the right side of my heart functions. Because of this, growing up was different for me compared to my peers. I always struggled to keep up with those around me, and from a young age, had to accept that my dreams of scoring at Wembley Stadium for England were probably not the most realistic. But even though I would never be Wayne Rooney, I grew to realise that I had bigger dreams of my own that to me were way more exciting than kicking a ball around and having a hair transplant.
While the rest of my class were chasing after footballs in the mud in freezing temperatures wearing just shorts and a T-shirt, I was sat in a cupboard in the music department writing music. Admittedly all of the music I made was terrible, but to me it was the most fun I had ever had and I was finally focused on something I could do without sounding like a wheezing distressed cat and being blue in the face by the end of it.
Over the years, I’ve gradually learnt what my body can and can’t handle, and although this is hard to accept at times, I’ve learnt to live within my limitations and not be discouraged. Instead, it’s important to focus on what you can do and work as hard as you can to make the most of what you have! For me personally, although my “sick beats” that I made when I was 13 were awful, I loved every second and have continued to work hard at what I do and I’m about to come out of university with a degree in music production! In today’s age, there are so many opportunities for those of us with limited mobility and a huge array of jobs and courses available from music to computers, from business to film production, we needn’t limit what we can achieve because we have a heart condition, but instead focus on the things that we’re passionate about and make them work for us!
University has been the best experience of my life. I didn’t know how I would cope at first. When I first came to university, I had recently struggled with an irregular heart rhythm and had to have several ablation procedures. I had also struggled with anxiety and just 6 months before I came to university struggled with panic attacks even when I was on my own for half an hour. Coming to university really boosted my confidence and the support that the disability team at Hertfordshire Uni offered was really great! I was able to live in a downstairs flat on campus and they supplied me with my own equipment so I didn’t need to walk to the uni facilities if I was having a rough day. Nearly 3 years later, I now live in a house off campus with some great friends and regularly walk to uni. In my second year I was the president of the Christian Union society and had so much fun working on that! University has given me so many amazing opportunities to grow in confidence and in myself as a person and I’m so thankful for the experience! Now all I have to do is find a job... This thought is stressing me out even as I write this, so here’s a picture of a goat to distract from the subject in question.
The whole purpose of this small corner of the internet is to talk about my experiences transitioning from the children’s services to the adult services, so I guess I should move on from goats and talk about the “horrors of transitioning!” I’m joking, calm your pacemakers...it was so simple and not horrible at all!
Since about the age of 5, I have been seen at the Evelina Children’s Hospital in London. It’s an amazing place with incredible doctors and nurses who have seen me through many visits! For that same time, I have been under the same cardiologist who is so amazing and I’m so thankful for, even when he tells me to man up and get over stuff that I should really stop worrying about at times!... When I was 16 I went to a transition day at the hospital where they went through the process of transitioning and talking about the similarities and differences between the children’s and the adult services. They talked about getting contact details for your new liaison nurses and reassuring us that the process would be smooth and they were totally right.
For me the transition process was a little different and arguably easier, as my cardiologist also worked in the adult team and so I would still be seeing the same consultant whom I had seen for most of my life. The only difference was the liaison nurses and also the fact that I would now be seen in St Thomas’ Hospital. Another difference that I experienced for the first time in the summer when I went to have my pacemaker replaced was the lack of screaming babies and joyful chorus’ of ‘if you’re happy and you know it clap your hands’. Unfortunately this was replaced with old men snoring and needing the toilet every 10 minutes. I’m still not sure which I prefer.
My parents were really great in the transition process and in my last couple of appointments in the children’s department, left me to have the appointment on my own so that I could get used to asking and answering questions for myself and start taking control of my medical condition and the decisions that go alongside it. I really believe that as soon as you’re ready, it’s important to learn about your heart condition and start taking control of it to give you independence for the future! Transition really wasn’t bad! It’s allowed me to take control of my heart condition and start making decisions for myself. This has given me so much independence and allowed me to go to university comfortably without having my parents around but knowing they were nearby and would help at any time. The only downside is the considerable lack of turkey dinosaurs and smiley faces on offer at dinner time in the adult ward!
