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.
ARVC ICD implant: Hello. I am new to... - British Heart Fou...
ARVC ICD implant
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
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!
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.
Please join the facebook group "Hope for ARVD".. you'll have enough support when you get there
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