I’m a 36 year old man who was born with Tetralogy of Fallot. The easiest way to explain this, is that it is 4 defects of the heart that I had repaired at birth. I personally spent my first 2 years of my life in Bristol Children’s Hospital with the condition and a few complications. I think some cases can be more severe than others.
How did it affect me, well I try not let it affect me, it’s not till the last year that I have openly spoke about it, I think I saw it as a weakness and didn’t want to be treated any different to a normal person as I believe, I can, and do cope with the normal things in life or think I can anyway. There are a few restrictions because I had to have a pacemaker fitted at 15 years old during a really important time in my life with my GCSEs, but again I didn’t let that effect me and tried my best to achieve the best results I could. Even though I came out of hospital on the first day of my examinations and had to have my mother sat with me in the examination room to ensure I didn’t do anything I shouldn’t!
What have I achieved? Well if I’m being honest and open about this I have been very selfish as I’ve not wanted to discuss the condition until recently and the reason for that was that I didn’t think I could. Not because I didn’t know what to say but because I didn’t think there was anyone out there apart from my surgeons and nurses that understood what and how I felt. It wasn’t till recently that I knew about this fantastic charity and in turn I am honoured to be an Ambassador for it. I hope that if I can give any advice to a mum, dad, nan, grandad, family member or support any one with any sort of CHD advice then I will feel I have achieved something, something bigger than I have achieved so far in my life. I didn’t have the support network that’s out there now, like Youth@Heart, and it is fantastic.
Are you scared ?Talk to me – I have cried, even in recent times.
Is it too difficult to talk ? Message me, my phone is always on.
Are you embarrassed ? Why – it’s not our fault we were born with this condition.
Are you nervous ? So was I ? And I am every time I see my cardiologist.
This condition doesn’t have an end, it is something we were born with and it is something we manage. I would feel honoured to help you manage what you do and how you think about your condition, now and in the future.
If you would like to speak to Steve do contact us and we can put you in touch.