Hello again - I’m 35 and was diagnosed with Hypotrophic cardiomyopathy around a year ago.
I had a transplant assessment and was told I don’t need a transplant now but will be reviewed in 6 months time - which is this October.
After my assessment - my specialist told me my genetic results had been reviewed and I have an fh1 mutation and for this reason they want to put in a defibrillator.
I’ve been living and working on a Greek island this summer - (usually based in London) and generally been feeling ok - I’m scared about having the device fitted and the permanence of it all and I just feel like I don’t want it.
I know all dr’s have advised I need to have it.
It would be great to hear peoples experience of the device and it would be great to be in touch with some people my age and at a similar life stage to me - of course welcome and comments or experience from other people.