Online/Meet ups for people with Hypertrophic Cardiomyopathy struggling with Mental Health?

[Chunkiedog]

Hi everyone, so my partner was diagnosed with HC when he was 14. Been in great shape and only having medication for his condition up until 2016/2017, then 41, he was advised to have an ICD. Since then he's had 3 occasions where the device has delivered shock therapy and unfortunately the last 2 occasions it didn't just go off just once it was many times within a few mins, but its the mental health side that concerns me. He's been diagnosed with PTSD and we are on the waiting list for therapy. However, are there any groups, online or meet ups where people living with heart conditions can share the good, bad, ugly and beautiful experiences? One of the hospitals has said that there is a meet up of people 4 times a year with hospital staff and patients but I wanted to know if there were other groups who get together more frequently as I feel people who have been through the same thing, understand each other better.

Thanks for reading 😊

[Quaddie]

Sorry to hear about your husband ot happens to so many of us. Yes there are online zoom meetings organised by Jane the Cardiomyopathy nurse. You'll need to join Cardiomyopathy. uk Sorry I'm not good with Internet links sure one of our other members will reply shortly with details. If you go on Facebook and Google Cardiomyopathy uk think the online group shows up there. Take care.

[Chunkiedog in reply to Quaddie]

That is great, much appreciated Quaddie, I'll check it out

[cavalover]

Hello. If you live in North Yorkshire I run a Heart Failure support group that meets on the last Friday of the month for people with Heart Failure to come and chat about their heart problems. We meet in a charity cafe that does yummy hot chocolate. 😊

[Chunkiedog in reply to cavalover]

Aw that sounds awesome, but we live in the South West in Somerset. Thank you for holding space for people and if we are ever travelling up your way, I'll need to try the hot chocolate out 😊

[ExWelshrunner]

Hi, if you are in the South Wales area, there's a group called Gwent Defibbers. A support group for people with ICDs. They meet 6 times a year and usually have a guest speaker. Great way to meet people with the same device.

[Chunkiedog]

That sounds great. Even though we are sort of close to South Wales, my partner is not comfortable travelling yet but as he gets better I'll give you a shout should he want to join you. Thank you 😊

[Travellingman76]

hi Chunkiedog. I am reaching out because I have recently and unexpectedly had to have a pacemaker fitted and am in the recovery period. Physically am ok but mentally shot. Within your cardiology department do you have a cardiac rehabilitation nurse ? a service they may offer is clinical psychotherapy. I am awaiting my appointment. I am not aware of any online groups but if you do end up finding any online groups please let me know !

[Chunkiedog]

Thank you. The only thing we have had with our Cardio dept. was talking therapies which my partner is on the waiting list for. The arrhythmia nurses have been great in the dept though. I've reached out to the cardiomyopathy.uk site which Quaddie in the posts above gave me and they have volunteers on there so we're waiting to find someone who can chat to him who gets what he's going through. It looks like a really great website and support and there are online groups there which you could try. Here is a link: cardiomyopathy.org All the best.