icd defibrillator: Hello again - I’m 3... - British Heart Fou...

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icd defibrillator

Jeder profile image
3 Replies

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.



3 Replies
MichaelJH profile image
MichaelJHHeart Star

Whilst the number of defibrillators in public places has increased over the years (I think all employers should have one on premises) there may not be one nearby if you have a cardiac arrest. In your situation I would definitely say yes.

A, then, 30 y.o. colleague had one fitted in 2012 - in fact shortly after Fabrice Muamba had a cardiac arrest on pitch during the Bolton vs Tottenham Hotspur game. The company we worked for collapsed in early 2013. Despite being fitted with the device he found another job easily and has also turned a hobby into a business. We lost contact a few years ago but at that timed had had no issues since the device was fitted.

IanMK profile image

Hi Jeder - I’m not 35 (except in my head, maybe). That boat sailed a long time ago.

I’m expecting to have a combined pacemaker and ICD fitted in September or October. I will then be having an AV node ablation so will be totally dependent on the pacemaker. The ICD will just be there as an insurance policy. I’m sure that will be just the same for you. I don’t know the details of your condition, but I’m sure your cardiologist has your best interests at heart. It’s normal to be scared to be told that you are at risk of needing a defibrillator at some point. However, as I see it, there is nothing to be scared about; just think about it as becoming part bionic 🙂.

In talking to my friends and work colleagues about my forthcoming surgery I’ve heard many instances of much younger and fitter people than I living life to the full with cardiac implants. If you’re lucky enough to spend next summer on a Greek island you may come to find yourself fortunate in having your own personal defibrillator immediately to hand. I can imagine that you could quite easily find there isn’t one to hand if you needed one.

I hope this helps. Good luck and take care.

gal4God profile image

Apart from the 1st 6 weeks no issues. The 1st 6 weeks my whole body hurt at different times.

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