‘My Life So Far With Tricuspid Atresia’- Ryan’s Full Story
Hello my name is Ryan, I was born on 13th June 1997, which was a Friday the 13th would you believe. The very next day I was transferred to Birmingham children’s hospital, where I was diagnosed with having tricuspid atresia. So began my journey of operations over 3 years. I had my first one when I was 3 weeks old and another two followed. I seemed to handle them quite well. I am now 17 years of age and have just been transferred to Queen Elizabeth Hospital in Birmingham.
At school, I never seemed to struggle mentally, a little physically but I was never sporty. I did OK in my exams, got through my GCSE’s, just about passed but I only need to pass to follow my dreams. In school I got on with everybody, most people knew about my heart problem and they treated me a little bit like an egg about to crack at any moment. Some went further and thought I was actually terminal but I explained it to them. It was annoying that they treated me like that but I suppose it was their way of caring, at least I wasn’t bullied for it. The lessons weren’t too hard, I didn’t feel stressed about what we were learning and if I did I got help. If I felt ill in lessons they would let me stop for a bit or see the nurse if necessary.
When they said I would suffer physically in sports and such it didn’t really both me. I wasn’t into sports, it wasn’t my dream so I was okay with it. You couldn’t tell the difference between me and the unfit kids I was with in PE.
I had to have warfarin tests every so often which is a prick in my finger and they take a little drop of blood then see if it’s thick or not. It’s annoying because I have to get up at 7:00 in the morning to have it done, but it was good on a school day as I was a bit late to school. I used to have maths then which I hated! It was weird when I went to the tests because I was younger than the others, who seemed a lot older. It made me feel weird, but one day I noticed someone my own age having the same tests. It made me feel better knowing people my own age there having these tests.
I also had to have QE blood tests. They didn’t hurt, it was just like somebody pinching you fairly hard for a little bit. The worst thing though wasn’t the needles or anything like that, it was the MRI scans: they put me into this big tube, scanned my chest and asked me to breathe in a certain way. The thing looked big on the outside but was small inside; it wasn’t scary, but it was unpleasant. I’ve had two such scans. The first took a couple of hours, during which I feel asleep; the second I was allowed to bring music so I brought one of my favourite CDs (Clockwork Angels by an old rock band called Rush) and it only lasted an hour which was good.
I still have stuff like this going on but it doesn’t bother me anymore, it was weird at first, but now it doesn’t bother me at all. You eventually get used to it.
I’ve also travelled a bit. I’ve been to Crete which is in Greece and Cyprus, Turkey. My favourite trip was to America. We’ve been to Florida three times; two of the trips were on my birthday. We went to all the Disney theme parks, Sea World and a couple of water parks (Blizzard Beach was my favourite). On one of my birthdays we went to Sea World and I got to eat lunch with Shamu The Killer Whale, who is sort of Sea World’s mascot. That was a good day. Travelling on the plane was fine considering it was over a nine hour flight. It was hot there, but it didn’t affect me. I was drinking plenty of water and taking it easy so I wasn’t really affected by it.
Up to date now, I’ve found my dream: playing bass guitar in an original hard rock band. When I left school I went to Walsall College to study music performance. On the first day we were there we had to get on the stage and perform Vertigo by U2. I was scared since I’d never performed before; I thought I was going collapse but soon as I started I felt great. Now I don’t really have a fear of performing, I think it’s great. I’ve finished the first year of college with a double merit which is good. I also joined a band; we’re called Memories of Shadows and play original hard rock. We just had our first gig, opening for a couple of bands at the 02 Academy in Birmingham, which was an incredible experience. It went really well for our first gig together; I felt no pressure and didn’t feel ill. I was living my dream and my heart had no problems with it. We’ve got a few more gigs coming up and I’m really looking forward to them.
And that’s about up to date! I have always been encouraged by my parent’s to follow my dreams, so to everyone out there follow your dreams and don’t give up on your personal goals no matter how big or small.
I’ll keep you up to date with my band.
You never know, one day!
Written by Ryan Harris (2015)