Left ventricular non-compaction – LVNC

Posted by charlottegrace @charlottegrace, Apr 22, 2019

<p>I am a 64 year old female just diagnosed with LVNC non compaction cardio myopethy. What are the main concerns in management of this condition</p>

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@theodoresony

I am really glad I found this page.

I have Left ventricular noncompaction and it’s a heart (cardiac) muscle disorder that occurs when the lower left chamber of the heart (left ventricle), which helps the heart pump blood, does not develop correctly. Instead of the muscle being smooth and firm, the cardiac muscle in the left ventricle is thick and appears spongy. The abnormal cardiac muscle is weak and has an impaired ability to pump blood because it either cannot completely contract or it cannot completely relax. For the heart to pump blood normally, cardiac muscle must contract and relax fully.

I am 28 years old and I do not have any of the common or expected symptoms. I participate in various extracurricular activities such as basketball, soccer, running, and walking 3-8 miles a day.

My ejection fraction is at 35% as I am sharing this.

I am in the process of following up with my doctor regarding this condition and go over treatments for the future.

Has anyone gone through this and reversed it or improved their ejection fraction to a normal fraction or non heart failure ejection fraction?

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my ejection fraction is at 43% and fluctuates between 5 points either way but the crazy thing is that I have had syncopal events (passing out) but no arthrima so at this moment i am a medical mystery. have you ever had doubt about whether you were going to survive or get through it?

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My daughter, who is 8, was diagnosed with PLSVC with absent right. I was reading the report and it mentioned a mildly traberculated left ventricle with normal function and an EF of 65%. How concerned should I be considering this finding was never mentioned to me?

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My wife was diagnosed 1 week ago with LVNC at 65 years old and a ejection fraction of 14%. Her ejection fraction went from 45% to 14% in about 1.5 years. We live in Western NC. Is their a specialist in LVNC? Is a heart transplant her only option for treatment at this point? We are seeing an advanced cardiologist next week in Asheville. I want to get her the best help available. What would you recommend?

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@theodoresony

I am really glad I found this page.

I have Left ventricular noncompaction and it’s a heart (cardiac) muscle disorder that occurs when the lower left chamber of the heart (left ventricle), which helps the heart pump blood, does not develop correctly. Instead of the muscle being smooth and firm, the cardiac muscle in the left ventricle is thick and appears spongy. The abnormal cardiac muscle is weak and has an impaired ability to pump blood because it either cannot completely contract or it cannot completely relax. For the heart to pump blood normally, cardiac muscle must contract and relax fully.

I am 28 years old and I do not have any of the common or expected symptoms. I participate in various extracurricular activities such as basketball, soccer, running, and walking 3-8 miles a day.

My ejection fraction is at 35% as I am sharing this.

I am in the process of following up with my doctor regarding this condition and go over treatments for the future.

Has anyone gone through this and reversed it or improved their ejection fraction to a normal fraction or non heart failure ejection fraction?

Jump to this post

Hi there – It must have felt pretty wild to get such a diagnosis at age 28! I was diagnosed at age 40 and it floored me. I too, had no symptoms (it was found only because I'd for the first time ever had slightly elevated blood pressure.
it had always been normal – so my OBGYN was afraid to continue birth control without my GP/Cardiologist making sure it was okay. Long story short, I was able to bring down my blood pressure through healthier diet, more exercise and without medication (when they caught the elevated blood pressure, I'd been overly stressed at work, and eating poorly), all prior to the diagnosis of LVNC.
But when the did diagnose me, and then told me the risk of "sudden death" (remember this was 2011 and at the time, not much about LVNC was known, and cases were all in far older patients, often with comorbidities), and that standard protocol was a pacemaker /defibrillator implant – well, I was understandably really distressed. I was otherwise very healthy and young and living a very fun full life, as it sounds like you are – deservedly so! So it was a shock and it took me a long time to process it.
I cannot accurately recall my ejection fraction from back in those days, but I do believe it may have been around 35% – 40% give or take.
It took me a long time to wrap my mind around the diagnosis and the need for the implant. But I did get the implant in 2011, and actually, now, 12 years later, I just had the surgery to update the implant (the battery dies after an approx. number of years – they'd anticipated 7 years, and I went longer than that, due to the implant not having to use much energy for me). The pacemaker on my device actually isn't even used – I've had no need for it. The defibrillator is there in case of an event/arrhythmia – which I've never had to date.
To answer your original question (! sorry for the ramble but thought you may appreciate hearing from someone on the younger spectrum of diagnosis age), my recent ejection fractions for the last few years have been normal – between 50-60%. My cardiologist has always attributed this to how well I have responded to my medication (I've been on a blood thinner – first Pradaxa, now Eliquis, carvedilol, lisinopril, and spironolactone) since the initial diagnosis 12 years ago. I'm now 52. For all intents and purposes, aside from feeling the implant when I touch the area (which isn't hardly visible at all to anyone looking at me, and I wear strapless dresses too without worry of embarrassment), I live a perfectly normal life. No restrictions and I've never had any additional symptoms and never has the implant device had to provide "therapy" to me due to any arrhythmia. I have an app on my phone that monitors the device, and sends regular reports to my Dr so they know if anything happens, and there's never been anything.
I share all of this with you to offer you a positive example of an outcome from this confusing and scary when diagnosed condition! I wish you all the best – and hope that this doesn't have to hold you back from your lifestyle either! If anything, it has been a blessing to me in some ways in retrospect. Having to face my own mortality at a younger age than most helped me have far more perspective on my life and how I want to spend my days. I'm actually really grateful for that and hope that you may find the same. 🙂 Sending you good healing vibes and support.

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