Introduction

[Slipperyphil]

Hi All. My name is Phil I am new to the fold. I will explain my situation. I have dilated cardiomyopathy, ejection fraction 15to 20. CRTD fitted . I am in permanent AF. Awaiting 2nd ablation. Had 2 blood clots in the heart, 2 cardioversion. Have diabetes. Don't drink never smoked. And was as fit as an athlete once. To look at me you would think I look well. I suffer with all things you would expect with the disease. I would love any advice from people who recognise the same. My sense of humour keeps me going. All the best to all. Phil

[SarahJLD]

Have you engaged with cardiomyopathy U.K.? They run various support and social groups. You’ve just missed the DCM group, it was on the 4th. There are a few regional support groups planned for this month so you might find your local area has something going on via Zoom.

[Bigbrian]

Hi, how long have you had the CRTD fitted for? They say it takes 9- 12 months before you feel the full benefit and it should raise your EF also

[IrisCarter]

Hi Phil, Apart from the diagnosis I am in a similar position. I was in the gym six days a week, was very fit, never smoked, didn’t drink a great deal and even now people tell me that I look well even when I feel shocking.

It is frustrating to have taken such care of my physical health but at least we have a strong baseline!

[Thanksnhs]

Hi and welcome, I had dilated cardiomyopathy and severe heart failure, it wasn't diagnosed until I was 58, my fault completely as I ignored all symptoms for years, putting them down to long hours at work and getting old! I had an Icd which was very fortunate or I wouldn't be writing this, everyone always said you wouldn't know I was ill as I looked so well, I still get looks when I park in disabled spaces, I smoked until I was 48 and I do like a glass of wine, which the docs don't mind, I was so late getting diagnosed meds didn't help so I was put on the routine transplant list almost immediately after two years I was upgraded to the urgent list 🙄in June and admitted to hospital to wait, I was so fortunate I got my new heart in July and discharged three weeks later, everyone still says how well I look, whilst due to the side effects of the meds I feel awful most of the time, but my new heart is good and hopefully the meds will start getting reduced and life will begin again, if lock down ever ends, take care and keep us posted how you are getting on I hope the treatment helps take care char