So I talk about my rheumatoid quite a bit but that wasn’t my first condition in fact I was in 1985 with congenital heart disease, which is called Tetralogy of Fallots (TOF)!
TOF is a heart condition that involved 4 abnormalities of the heart, it’s about the heart structure more than anything.
- Pulmonary Stenosis – in simple terms means you have narrowing where your blood travels to your lungs, which I had.
- A hole in your heart – I had this too
- Over riding aorta
- Thick right ventricle – I had this too!
As far as I know I had 3/4. I was born in a local community hospital then transferred up to Birmingham children’s hospital where I had a BT shunt to help the blood flow better. This was done twice apparently!
After this I went home and went into heart failure on my 3rd birthday! I know what a gift I gave myself! I’m lucky that I was ok in the end.
One November day i was called I’m by my cardiologist Dr Giavanni and surgeon Dr Brawn who completed a TOF repair .. although repaired I was and never will be fixed. I stayed under the care of these men who well Dr Brawn saved my life until the age of 16 I only had 1 minor surgery in this time I was about 5 and they widened my artery again.
At 16 I left the children’s crying and handing out my thanks for everything cards. I was an adult, in my 16 years I’d had more echos and ecgs that people do in the average life!
I turned up at the QE in Birmingham to meet my adult team! Unfortunately we didn’t get along and I firmly believe you need to have a good relationship with your cardiac team as your life is in there hands. So I asked for a transfer.
I went off to London Heart hospital and found my team, professor Deansfield and Nurse Fiona (specialist in grown up congenital heart patients). Where we went through a lot together and again had sats, ecg and echo .. too many! At the age of 31 Fiona left to teach the new generation of heart nurse I cried! Then I got the nurse prof was retiring from the NHS I cried again. I’d been with them my whole adult life 15 years, I was gutted!
So I sat down and looked at the facts, Barts where the Heart hospital located to was not an easy journey for me as a wheelchair user it really did take a long time! Now my team had gone did I want to make that journey!
I’ve got two choices
1. Stay at barts with the cardiologists that are there
2. Move closer to home
I’ve decided todo some research at the moment Bristol is looking ok, I’ve emailed them asking to look around as it’s a big move i know all to well about transition and the importance of getting on with your cardiologist.
So I’ll have to see what the coming months brings but what ever happens, I’ll always be greatful to my two teams who saw me through childhood and gave me life and my second team who saw me through some tough times in adulthood.
Vicky xx
