LVNC

[Meg94]

I’m wondering if someone can help. I'm 24 and two years ago I was diagnosed with Atrial Fibrillation after history of syncope. I’ve since had two Cardiac MRI’s which have shown Left ventricular non compaction. I’m just wondering has anyone heard about this?

[Blackout1]

Meg94 - I’ve been trying to find someone else with this and just changed upon your post. I was diagnosed with this last July, following a number of tests. My children are currently undergoing tests to see if they’ve inherited it. I’d be more than happy to share my experience with you; I’ve felt very isolated following my diagnosis as I don’t know of anyone else who has it /have symptoms etc.

Apologies that I’ve only just seen your post; I do hope you are ok.

[Gucc1 in reply to Blackout1]

I have had a-fib approximately 3 times . During my last echocardiogram the cardiologist stated that he thinks I have LVNC and I just had a cardiac MRI to confirm his diagnosis. I sure hop I don’t have it. My EF was a little low at 42% and to top it off I just had a angioplasty where they placed a stent in my LAD . If I do have this what limitations should I expect?

[Blackout1 in reply to Gucc1]

Hello! I can only tell you about my experience; it may be very different for you. I was very active before I got my diagnosis, going to the gym and aerobic classes several times a week. The worst thing for me was being told to keep my heart rate below 110bpm - that’s effectively an energetic hoovering session! The medication (Bisoprolol and Losartan) have eased my symptoms (arrhythmia/extra heart beats/high blood pressure) so I’m currently feeling better in myself. I push myself as much as I can and have an indoor bike I use almost daily. I have, unfortunately, gained weight since my diagnosis. I can’t walk as fast as I used to, so I go for longer, more leisurely walks. But I try hard to just get on with life. Here’s hoping that you haven’t got it.

[Darkshades in reply to Blackout1]

HelloBlackout1

I just saw your reply and noted you mentioned 110bpm … does this mean forever?

I ask because I’m currently trying to recover from OHS that went terribly wrong 😥 and had started having physio with walking and one day before we even started the physio person checked my vital signs and contacted the cardiac nurse and was told not to allow my bpm to go over 110 … so just wondered if this means forever or until perhaps IF I get better ❤️‍🩹

[Blackout1 in reply to Darkshades]

Hello! That’s definitely a conversation between you and your consultant. I think everyone is different and it would be dangerous for me to guide you on what exercise level would best suit your condition. Good luck; wishing you a speedy recovery.

[Darkshades in reply to Blackout1]

Ok - thank you for your speedy reply … I keep meaning to ask my cardiac nurse, but keep forgetting 🙄 … I’ve had to cancel my last 3 physio appointments as I seem to be less able to walk at all now

[Gucc1 in reply to Blackout1]

Thank you