Living with Tetralogy Of Fallots & Valve Replacement.

A place for GUCH Patients and their families to exchange experiences and gain support. So please feel free to ask any questions you may have.

Moderators: Moderator6, Moderator2, Moderator5, Moderator1, Moderator3

Living with Tetralogy Of Fallots & Valve Replacement.

Postby Miss Summers » Sat Jul 15, 2017 11:20 am

Hello Im Charlotte,

I live in Bromley and I'm 21. I guess I'm writing this to connect and see if there's anyone out there living with the same condition.

I was born with tectrallogy of fallots & a whole in the heart after months of going blue and having low oxygen levels I had corrective surgery done when I was six months olds. Growing up I would get out of breath and occasionally go blue but it didn't stop me from living a normal life I competed in swimming galas and was a keen actor.

I always knew I would need to have a vavle replacement at some stage in my life but I was on no meds and was seeing cardiology every 2 years. However when I was 18 they told me it was time. I struggled to cope because although the success rates are high I was scared I wouldn't wake up. It wasn't the actual act of dying but I struggled to answer the fact that my life had barely begun and had so much more yet to do but this was a risk.

I ended up on a ward full of 50-90 year olds. I feel like there is a whole generation out there that is being miss although I feel older than my years would suggest I felt completely isolated. The friends that I had at the time couldn't cope with fact my life was at risk and as a result I lost them.

Nearly 3yrs on I'm at drama school and work as a swimming teacher. I still get tired and chest pains which I'm going back to cardiology for in 2 months. I feel like I'm only just starting to heal and learn how to live with this. How do you live with the fear of the Unknown.

So darlings I apologies if this sounds like a sob story its really isn't but if you have this condition and your under 50 it would be really nice to speak with you ;) C
Miss Summers
Posts: 3
Joined: Sat Jul 15, 2017 10:54 am

Re: Living with Tetralogy Of Fallots & Valve Replacement.

Postby Charleylaura » Tue Jul 03, 2018 6:43 pm

Hi Charlotte,

I’m Charley, I have TOF and need a valve replacement. I like you had open heart as a baby to close a hole and put a leak in my right side valve to make it work properly.

I’ve recently turned 27, and had my last surgery 10 years (today) to have a pacemaker fitted. I went from having appointments ever 18 months-2 years to now every 6 months. I gave birth in February and now the fear of the unknown is worse than ever. I’m petrified of anything happening to me and leaving my little one behind.

I completely understand the friendship thing too, as when I had my last op I had 1 friend stick around, but now no longer. Luckily I’ve now got a friend that understands how life is. She’s a god send and I wouldn’t be without her.

Here if you want to chat
Posts: 3
Joined: Wed Aug 26, 2015 6:03 pm

Return to General Discussion Group

Who is online

Users browsing this forum: No registered users and 0 guests