Hi everyone. Hoping somebody can help with some advice!
My dad died from dilated cardiomyopathy when he was 29. That was in 1979. It transpired that all his siblings have the gene as well as my sister and me. The heart specialist has been monitoring me for about 10 years and there were never any symptoms. I went for routine checkup last week and consultant pulled up MRI results that I had two years previously. He started to read it to me as if he was seeing it for the first himself and it states that I had evidence of LVNC but that the EF was 52%, so borderline. He has referred me to another heart specialist and said there’s no need for me to be on asprin at this point. I was in a bit of a daze as I left the appointment and didn’t manage to ask these questions:
As the MRI was two years ago, would the LVNC not have progressed?
Could the LVNC be from dilated cardiomyopathy or is it a separate defect altogether?
Could my intermittent (mild) pains in heart area be caused by it as well as heart palpitations?
I haven’t been able to get much sleep since hearing this news and after googling LVNC I think I’m just going to drop dead at any moment.
Anyone with any knowledge on this, I’d really appreciate hearing from you
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Ktez
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Hi ktez, although I have no words of wisdom for you may I suggest you phone the BHF no on 08088021234 there line should be open now and they are specialists. Please phone to put your mind at rest or at least you will know what you are dealing with.Regards all the best Sheena x
I have LVNC cardiomyopathy. I haven't met many people with it though, it's a bit rare. It was diagnosed about 10 years ago on MRI, I've had follow up MRI every few years and it has not changed or progressed. It's not as well understood as other cardiomyopathies.
My cardiologist says they believe it would've been present since birth, as the compaction of heart muscle is meant to occur during development in the womb. He doesn't expect the non compacted area to change, just to remain as it is. MRIs weren't good enough to detect it years ago though and people didn't know about it.
When I was diagnosed and googled it, I thought I was going to drop dead too! But it's not like that for the majority of people with it and they say you can have it and live a completely normal life.
It never caused bad symptoms for me, except I had difficulty with strenuous exercise, did get short of breath and was often tired. I wasn't on any meds for it.
Then just over a year ago I had a heart attack due to a blockage. They said it was artery disease, not related to the cardiomyopathy.
The dr did say though that lately they have been seeing people with LVNC get other random heart problems. They don't know what the relationship is and if there is one or not, it's an area of current research.
Now I'm on meds because of the heart attack. I daresay having a cardiomyopathy weakens the heart in general and maybe predisposes one to further heart issues. That's what I feel must've happened with me.
I've been told that LVNC can be present and never cause any problems, but you can't do competitive sports and any children or siblings should be tested so they know if they have it too as sometimes it's genetic. It's something to monitor, but everyone is different in how it may or may not affect them.
Have a look at cardiomyopathy uk website, it's got some good information.
Thank you so much for taking the time to reply to me Callie456. Honestly, just hearing from someone who has LVNC is so very helpful and I read it all with great interest. Sorry to hear about your heart attack - it must have been so frightening at the time. Interesting when you talk about the possible links to other heart issues. Hopefully as time progresses they will learn more through research. When my dad died in 1979, they didn't even know that much about dilated cardiomyopathy. He would have possibly lived for much longer if it were nowadays.
I was also diagnosed with non compaction after passing out and diagnosed with trifisacular block . They saw something on the echocardiogram so sent me for a cardiac mri. I had no symptoms that I knew of. I needed a pacemaker, my 2 children where screened and fortunately are all okay. As Callie456 has said it is something that happens when you are in the womb. I had a consultation with my cardiologist this morning and asked would I need another mri to keep a check. He says no because it doesn’t seem to get worse. I also have low ejection fraction of mid 40’s.
Hi Buddy. Thank you so much for replying. As I said to Callie456, it means so much to know I'm not alone with this heart disorder!
So sorry to hear about your blockage but glad to know you are on the mend now. Did they say at the time that it was caused by your LVNC?
That's wonderful news that your kids don't have the gene. I've 4 children who will all need to be screened. They are currently under a cardiologist for the dilated cardiomyopathy as I have that gene too.
It's reassuring to know that your cardiologist doesn't seem to think that the LVNC gets any worse as such. This was my main concern as the MRI was two years ago and goodness knows how long it will take for me to see this new specialist.
It’s an electrical fault blocking signals not an actual blockage. But yes this is one of the side effects of non compaction. My MRI was in 2020 and have had 4 echocardiograms since then and not much has changed
*Update* for anyone who was following this post and experiencing similar issues.
I saw the specialist yesterday and she wasn’t too concerned about the LVNC (as it is very mild) and said we are more focused on the heart function which at 52% (LV) is almost normal and 55% (RV). She did say that I have dilated cardiomyopathy but only mildly impaired at this stage.
I continue to have sporadic heart/chest pain but I am seriously thinking these may be psychosomatic? The consultant did say that we will do all the investigations necessary but that the mind can play a huge part in bringing on symptoms as it is so complex.
I am a lot clearer about things now and feel much more hopeful. Most of the time, I think it’s the fear of the unknown that is the worst bit!
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