ARVC ICD implant

[JanJan7]

Hello. I am new to this forum and hoping to get some reassurance about ICD (defibrillator) implant. My daughter is 26 years old and has just been diagnosed with ARVC and needs a defibrillator fitted in the next couple of weeks at St Thomas’ hospital. She is obviously very scarred to not only have an icd fitted so young but also because the disease is progressive and there no cure. As this condition is genetic the whole family is now in the process of being screened. It would be lovely to hear from anyone who knows about this condition or icd.

[SpiritoftheFloyd]

Hello JanJan7

Sorry I can't help you with ARVC. I had an ICD fitted last August and wrote a post on the day, which hopefully will reassure your daughter about the procedure. The link is below

healthunlocked.com/bhf/post...

[Hidden]

Hi,

There is info on cardiomyopathy.org . They run support groups online and in person. It might be worth trying there. You can also call or email specialist nurses and those with experience of genetics.

There's also c-r-y.org.uk which is aimed at teens and young adults.

Hope she can find some reassurance. It's not easy to get your head around it all!

[Hidden in reply to Hidden]

I just remembered another support for people under 35 with ICDs and heart conditions: myheart.org.uk/meetings/

They have online support and meetings as well.

[kitzabella]

Please join the facebook group "Hope for ARVD".. you'll have enough support when you get there

[ARVCtoo]

Hi, I also had a recent diagnosis of ARVC after my third child. I'm now 37 so a bit older than your daughter, but still hopefully classed as young!

I have seen cardiologists for years after having a heart rate issue during surgery when I was around 22. It was never picked up and just got told I didn't need anything doing but come back when I felt a need. A heart problem got picked up every pregnancy but not ARVC.

My Dad has it, after a few cardiac events so this time they went that bit further and gave me an MRI. I got the result by letter stating no more pregnancies (We were done anyway) and to have an ICD.

I have had this fitted 2 months ago. I went for an S-ICD so it sits under my arm not on my chest as I'm very slight and didn't want anyone to see.

Not many people know I have the condition or the ICD, even work colleagues who don't know why I'm off.

I'm scared I guess I've passed it on to my children, who commence screening once covid passes.

Anyway I hope my story helps your daughter feel better another young(ish) person has it. Good luck!

[JanJan7 in reply to ARVCtoo]

So sorry I’ve only just seen this message. I hope you are well. My daughter now has her icd fitted but is now getting problems with very low blood pressure. She has been getting lots of palpitations but they can’t up her medication due to this! X