18 year old ICD recommended - any similar experiences?

[lintin62]

Hi, my 18 year old daughter has just been recommended to have an ICD fitted. Understandably she's pretty devastated right now (though I appreciate that the hospital wouldn't have recommended she have one if they didn't consider it necessary). Is there anyone on this site of a similar age who has an ICD device fitted please? Thank you.

[Calliope153]

bhf.org.uk/informationsuppo...

Worth a look at the above. Also suggest you ring the BHF nurses and ask them to direct you to the resources for teenagers/young adults. They are great at pointing you in the right direction for information and support. Good luck.

[lintin62 in reply to Calliope153]

Thank you, I will contact them.

[MichaelJH Heart Star]

Hello and welcome to the forum! The youngest person I have known to be fitted with an ICD was 30. Recovery time was very quick and free from worry he made his hobby into a second career. When I was in my mid-twenties a young woman (18) where I worked and a 23(?) man at the nearby garage were victims of sudden death syndrome. Then these issues could not be detected and protected against. My niece's father-in-law was saved by one earlier this year so I know they work!

As suggested talking to the BHF nurses could be beneficial and the cardiolgy department should be able to refer to support services.

[lintin62 in reply to MichaelJH]

Thanks for your reply. I’ll contact the nurses as suggested.

[Lezzers]

Hi, there's a private Facebook group called ICD - crtd support uk. I know there's a few young people on there who've had ICD's fitted. They're a lovely friendly group, who'll certainly have lots of info & support for you & your daughter

[lintin62 in reply to Lezzers]

Thanks, I’ll have a look at that now.

[siouxbee19]

I am sorry your daughter needs a device, but very glad they diagnosed her now! I begged for 5 years before I finally was able to get one! Once I healed from the easy procedure, and as time goes by, I almost forget it's there. I consider it my little box of "insurance", and have less stress knowing it's there if I ever need it!

Not sure why your daughter needs one, but I have hypertrophic cardiomyopathy w/family history of SCD. I found this organization and am so glad I did. It may not pertain to her, but I'm sure they could lead her in the right direction. The founder and I believe her young daughter both have a device.

4hcm.org is the site, they are also on Facebook. Although it's based in the U.S., people share the same issues worldwide.

Wishing her wellness!

[lintin62 in reply to siouxbee19]

Thanks so much for your message. We are waiting at the moment to hear back from the hospital and so we’re not exactly sure what’s happening. She had myocarditis at 9 days old, has been very well over the last 18 years other than this very recent episode of raised heartbeat picked up on her ecg. Thanks for your kind wishes.

[siouxbee19]

Thoughts and prayers are with you... please keep us updated. ♥️

[Wmh79]

Hi I am 39 and have just had a icd fitted , it was done on the 25 th of sep . I felt a difference with confidence the next day. It feels very bruised the next day but just over a week in now it is a lot better , just gotta take it easy for few more weeks lifting etc. But feel at ease knowing it’s there to help if needed ❤️🙏👍

[Smudge1990]

I was 18-19 when I got mine fitted, was a huge shock but will take a while to get her head round it all. All the best Chris