ICD AT 20

[LongQTandme]

Hello. I have longQT2 syndrome and have all my life as it’s genetic. I had a collapse a couple of months ago and my cardiologist has decided I’m at high risk and need an ICD as beta blockers are not enough protection for me. I’m so nervous at how this could change my life especially being 20, I do however understand it will save my life. I haven’t ever met or spoken to anyone with one of these. Speaking to my dr it’s less common to have them at a younger age also so I was wondering if anyone had any young perspectives on having an ICD, or just anyone with general advice. I’m worried about never driving again, how it will look and daily life with it there. It’s getting fitted in the next few weeks.

[Hidden]

Hello,

Have you heard of my heart support group? myheart.org.uk/ it is there for people aged between 18 and 35 with any inherited or congenital heart condition. They have specific advice about ICD's and real life stories about living with one.

It must be a lot to get your head around, and I think searching for other peoples experiences is a really good idea.

I hope it all goes well for you.

[Hidden in reply to Hidden]

And here is a link to information abou their private facebook support group myheart.org.uk/online-suppo...

[LongQTandme in reply to Hidden]

Thank you

[MDR1]

Hi I'm so sorry to hear about your problem at such a young age! I can't give you a young person's perspective but I can tell you that life will be pretty much the same after you have the ICD. You'll have to be careful and won't be able to lift your left arm for 6 weeks. You will have a scar that will fade but not disappear. But if you follow the cardiologist's advice you'll be fine.

And you will be able to drive after 4 weeks and resume normal life. The only restrictions will be things such as induction hobs and travelleters. These have strong magnets so don't use them.

All the best

[Wire57]

Hi I know I’m a lot older than yourself but at 62, I was an avid scuba diver having completed hundreds of wreck dive in the Red Sea, I spent two hours a day at the gym, enjoyed hill walking and had played in a brass band. I had a cardiac arrest with my heart stoped for over five minutes and an ejection fraction of only 10%. I had a CRT-D fitted which is slightly larger than an ICD and can honestly say after the first six weeks where you have to limit movement of the left arm I have no restrictions in what I do except I am no longer allowed to scuba dive or play in a brass band. I still go hill walking, exercise for two hours a day cycle everywhere, run round with my grandchildren and actually feel better and have more energy than than I have for the past forty years. All I can say is in your position I not only would be accepting an ICD but would actually ask for one to be fitted.

[dorito26]

hello! my friend had one put in when they were 17/18. they have a scar but that’s it! it has helped them out so many times and they’re grateful they have it. they’ve had it for a few years now