I am 53 and require an ICD

[Pottsgene]

I am 53 and require an ICD and scared but also want and need to continue an active life. Currently in Atrial Fibrillation and a degree of heart block. I also have a cardiac Gene that causes issues with conduction and cardiomyopathy. Looking for reassurance and normality and would like to live till at least 75,

[Alixia]

hello, I’m 39 with an ICD, heart block and have also had afib, and still live a very active life. The ICD actually helped me have more energy. What is the gene that you have that causes cardiomyopathy?

[Pottsgene in reply to Alixia]

Reassuring read, my gene is Lamin Ac that affects muscle, a sister to muscular dystrophy I’m told. I’ve never researched it as some times it’s best not knowing I guess. Yes I’ve got heart block & AF but very much asymptomatic apart from if I’m tired or stressed I get a tightness in chest only. But I think now I’m 53 and having lost 7 family members my cardiologist now feels it’s the right time for an ICD that I knew would happen but so scared. I love my active life and love my holidays abroad and scared it’s going to stop all this. I still work full time as a cardiac sister and sometimes too much knowledge is not good. I just hope I can block the thought an ICD inside my chest like my late mom did.

Thank you for your reply, I need all the reassurance I can get right now.

[Alixia in reply to Pottsgene]

I also have the Lamin gene! You can join our Facebook group called Laminopathies Support Group. There are over 400 members that share their experiences.

I am a size 8 and had my ICD fitted under the muscle, and it’s pretty much invisible. With holidays you just need to make sure your insurance covers cardiomyopathy. Have you been prescribed anything for your Afib? I was started on bisoprolol, but ended up having an ablation last year which has worked well so far.

There are a lot more treatments available now that were not available for our older family members. Everyone’s disease expresses differently too, even with the same family and gene mutation.

It will be great to see you on the group.

[LindaDaisy]

I’m 68 and I have Left Ventricular Non Compaction. I also have heart failure and I’m in permanent AF. My cardiomyopathy is genetic and I have 2 copies of the MYBPC3 gene. My problem was found when I was pregnant in 1985 age 30. Over the years I’ve needed more medication and had an ICD in 2014. Had my first box change last year. I’m not that active physically but I never was, but I’m a very busy person and since retirement live life to the full.

[Pottsgene in reply to LindaDaisy]

Wow!!! Your life sounds like mine. I first found out I had an issue in pregnancy also 25 years prior but then it was just an irregular heart beat. Like I said I’m 53 and still live a very active life and work full time as a Cardiac Nurse, don’t ask 🤯 The atrial fibrillation as been around for about 5 years but I’m now unit 24/7 but in view I’ve lost 7 family members with this Gene I’ve now reached a stage they can no longer take any risks. A day I was so dreading and never wanted as far too soon after the loss of my 54 year old brother with this gene.

Thank you for your reply. Lovely to hear from people like myself as gives me abit of hope. Xx

[LindaDaisy]

How awful for you. I’m so sorry. I lost both my siblings, my sister at age 10 and my brother age 49 after a heart transplant. Don’t dread having an ICD. It’s the best decision I ever made. For me the best benefit has been the improvement in my mental health. There is a good Facebook group called ICD Support-UK. It started about the time I had my ICD. It’s like Health Unlocked, very friendly. The people are great and supportive. We don’t get any nastiness which seem to creep into some Facebook groups. Not as technical as here though.

[Pottsgene in reply to LindaDaisy]

Sorry to hear about your siblings. You feel very alone when living with a faulty cardiac gene. We have had 2 failed heart transplants in our family. It’s not even been 12 months yet since loosing my 54 year old brother with this gene so the news of my ICD has come at a very raw time although there’s never a good time I guess. I am just about to start blood thinners but at present do not need any heart tablets thankfully so that’s a positive. It’s the thought of having a foreign body in my chest but if it saves my life I guess. Assuming you have a gene ? Is it from your moms or dads side??

[LindaDaisy in reply to Pottsgene]

I got a faulty copy from each parent, apparently it's very rare to inherit 2 copies. I felt like you about having a foreign body but once I had it, it soon felt fine. I'd compare it to having a crown or big filling. It doesn't feel like part of you to start with, but soon settles in.

[Pottsgene in reply to LindaDaisy]

Thank you for your support and reassurance xx

[dturt in reply to LindaDaisy]

It is interesting to read your posts. Although I have not had any gene testing, I have a cardiology appointment in 2 weeks. I am quite worried, and wouldn't be surprised if i had to have a pacemaker at some point. I think I would struggle with the thought of having it mentally, so hope I can cope ok if the day comes.