I was born in England in March 1981 TGA, PS and VSD’s, to two healthy parents. I was not initially diagnosed with CHD but after being sent home a consultant came to visit my parents on a Saturday at our home to tell them about my condition.
The same day I was sent to Liverpool where there was a specialist heart centre and I underwent my first surgery shortly afterwards.
As I grew up I lived a fairly normal life, but began to get sick again around the age of 6 and my parents were told that we were facing a heart transplant.
They were sent home to consider the surgery when I was called back and they were told that a Dr called Roxanne McKay was willing to try something called a modified Fontan procedure to buy me some more time.
That was done in December 1988 and last year it was 30 years since my last open heart surgery.
After the surgery and growing up I lived a very normal life – I had to go for regular checkups and tests but other than that I felt I was cured and the CHD was behind me.
I used to tell people that I had a hole in my heart but that it had been fixed and until I was probably mid 20’s that is what I thought.
I’ve traveled the world, drank, sky-dived, got tattoos and genuinely lived my life to the fullest.
I feel like I’ve lived a lot of my life based on the fact that if you don’t try you wont know. Its got me into a few scrapes though.
In may 2016 I ran my first 10k and in August 2016 I ended up in hospital having a cardioversion after 4 days in AF. It was a shock. (literally!)
At the end of 2016 I had my first ablation and then in 2017 I was well until May when I ended up back in A&E in AF. This started one of the hardest years for me. I spent most of 2017 in A&E for AF at the end of the year I had to cancel a holiday that we’d had booked since the March because I was simply too ill to fly.
I was scheduled for another ablation in Newcastle which we were told went well but then a few months after I was back in A&E with the same thing.
In September I was scheduled for transplant assessment and due to my unstable rhythm they also listed me for another ablation.
This time although the assessments had gone well and I avoided the Transplant list, the ablation didn’t – my heart rhythm was so unstable that they weren’t able to ablate anything.
So I was sent home.
I have been offered the Fontan conversion surgery but for now I have chosen to manage my health with medication. I currently take a beta blocker when required and warfarin daily.
Since my last ablation things have gone back to normal for me really – I feel so much more settled knowing there are options and I feel that my heart rhythm is now much more stable.
I eat and drink what I want – obviously taking into account the warfarin but I don’t seem to have any other health issues.
I work full time running my own digital marketing business and am in the process of developing an app for CHD patients to help manage their care and symptoms. That should launch February 2019.
I don’t have children – It was never something that I wanted and so the added risk to both me and any potential child just made the decision easier.
I’ve just started running again and will be running another 10k in May for the Somerville Foundation who are the UK’s Adult Congenital Heart Charity.
My favourite quote:
‘But what if I fall? Oh but my darling, what if you fly..’
What advice would you give to CHD Parents?
I think that if I was to give a heart parent advice I would say be honest with your child about their condition, teach them to know and understand their body and give them the confidence to be their own advocate. One, you wont be at the appointments with them, so the sooner they feel empowered in those appointments the easier that will be.
Also – Don’t limit them. Don’t tell them what they can and can’t do with CHD just let them live and learn
I have nothing but praise for my heart team they are amazing – I know that they are at the end of the phone if I need them and they are always working in my best interests.
What CHD resource do you wish you or your parent(s) had growing up? Why?
Hearthub! I think that we need something to bridge the gap and empower teens/young adults – I wish that I’d had HeartHub when I was younger and I’m excited that others will. Also I wish adults could still have numbing cream!
To Follow Amy:
I have a heart page on Instagram @the_chd_life, Facebook TheCHDLife and a YouTube channel with the same name and also I have @HeartHubApp I love it when patients and parents contact me so please feel free xx