Hello all,
I've been lurking away on here for a few weeks and have finally decided to post, usually I avoid posting online or to social media like the plague (something I'm glad to say I haven't got... yet!) but I really wanted to thank everyone for their contributions as they have given me a brighter outlook after "The Letter" arrived a few weeks back!
I have had dialted Cardiomyopathy for over 10 years and in that time I haven't suffered a great deal with it, mine is inherited and I have lost close family members to it but until recently the doctors have told me I'm fine and just to keep taking the pills! My visits to see them went from 6 monthly to yearly to every 2 years and on more than one occasion I was told that if they didn't already know better my heart would look perfectly healthy!
With this in mind I have carried on my life in a fairly normal manor, I'd eat pizza and drink wine but I'd also play squash and go to the gym so there seemed to be balance but after a recent MRI scan my world suddenly got a bit of a shake up!
The letter stated my ejection fraction was down to 34% putting me in the "severe" catagory, just the word "severe" was enough to send my mind into meltdown and as luck would have it I was on leave that day and home alone for the majority meaning I had plenty of time to dwell on the possibility that I'd be shuffling off a fair bit sooner than I'd planned.
My first thoughts were of my older brother who died from the same issue aged 44, not too far away from my age. I watched him deteriorate over a number of years and in the end it was a pretty undignified way to go with his final years spent in and out of hospital and then finally in my mums dining room which had been converted to a mini ward.
My mum never got over losing her 1st born and within a year she too died after 4 months spent in hospital with the same condition. As you can imagine this was a very difficult time for me but I got through it and eventually life carried on as normal or a "new normal" at least.
After I'd finished reading the letter and researching what it all actually meant I'd decided that I'd had it and that I needed to get things sorted while I was still able, I was researching pre-paid funerals, looking for additional life and income insurance and generally wondering if I could get all these things sorted in time. I don't tend to suffer from stress very much but it's fair to say in the days following the letter I certainly found out the meaning of the word.
As part of my research I ended up here and once I started to read other people's experiences I found that there are folks living quite happily with the same condition and a fair few who have it much worse than I do that go about their business in a normal enough way, sure they can't do everything someone with a healthy heart can do but they are alive and enjoying life. To say this gave me hope and dragged me out the despair over my impending and untimely death is a bit of an understatement so thanks to all who have shared, it really did make a difference for me!
So... I have made some sweeping changes to my lifestyle, the weight is dropping off as the fruit and veg is going in, the wine is not flowing (as much as I'd like) which is a shame but needs must!
Just noticed I've been waffling on for a while here so all I want to say is thank you and keep it up! I have many appointments coming up in the next few weeks which is still a worry but I'm ready to hear what they have to say and after my research on here I may well know what it is they are on about 
My story 
Post-AVR: 1st Anniversary
My Story 
A positive story 😊
