1. < Heart & Blood Health

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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ohpolly | @ohpolly | Dec 23, 2022
In reply to @loup "My wife was diagnosed 1 week ago with LVNC at 65 years old and a ejection..." + (show)
@loup

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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Hello, how is your wife doing now? Was she diagnosed with heart failure?

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ohpolly | @ohpolly | Dec 23, 2022
In reply to @jerrishell "My daughter, who is 8, was diagnosed with PLSVC with absent right. I was reading the..." + (show)
@jerrishell

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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I don’t think you should be concerned since there is a criterion for diagnosing LVNC. My report mentions “prominent trabeculations” — so mild trabeculations are much less concerning.

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ohpolly | @ohpolly | Dec 23, 2022
In reply to @theodoresony "I am really glad I found this page. I have Left ventricular noncompaction and it’s a..." + (show)
@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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I was diagnosed 3 years ago at age 27. How did the doctors find it if you have no symptoms?

I had my first cardiac MRI in 2019 and another one in 2021. I improved both my ejection fraction (from 53% to 69%) as well as the non-compaction to compaction ratio (from 5.0 to 2.76).

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ohpolly | @ohpolly | Dec 23, 2022
In reply to @jamesyoung "What is the definite diagnosis ratio for LNVC? I had an MRI done and was told..." + (show)
@jamesyoung

What is the definite diagnosis ratio for LNVC? I had an MRI done and was told mine was 2:1 NC to C and everything I’ve read says a diagnosis is greater than 2.3:1 ratio. Does anyone know and does that ratio if true mean I don’t have it?

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My ratio has improved from 5.0 to 2.76 in a span of 2 years. I have read articles that suggest a ration above 2 is the standard criteria but it’s still being researched and studied so they treat every case as important. I believe that a decrease in ratio is much better when it comes to an overall prognosis however, it does mean you still have trabeculations.

What’s more important are your symptoms, do you have any?

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leodw | @leodw | Feb 8 12:43pm

Hello I have a question I don't understand why if I have left ventricular non-compaction and low blood pressure to start with why my doctor would put me on losartan on top of that. Since it is generally used to lower blood pressure. My average blood pressure is in the 120 over 80 or 116/78 range. I've had a heart murmur for 40 years and recently replacement valve was put in. But he wants my ejection fraction to improve so we are trying losartan. How does lowering my blood pressure help with my ejection fraction?

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theodoresony | @theodoresony | Feb 8 1:43pm
In reply to @caelwarren "good afternoon charlotte my name is cael I am 16 years old and in the past..." + (show)
@caelwarren

good afternoon charlotte my name is cael I am 16 years old and in the past year, I have been diagnosed with Lvnc with a chance of sudden cardiac death. what mental health problems have you experienced after having been diagnosed and what problems have you go through.

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About three years and a few months ago, I found myself in a state of depression and concern. Despite lacking noticeable symptoms and being physically active in sports and daily activities, I wasn't initially alarmed. Over time, I realized that managing my mental health was crucial. You can either let it affect you negatively or put in your best effort, maintain a healthy diet, stay positive, and cultivate heart-healthy habits.

My primary worry stemmed from having a son at that time. I began envisioning scenarios where I might not witness his milestones—walking, talking, going to school, graduating, etc. Fortunately, I've not only witnessed my son's first steps, but I now have two boys, and it seems another one is on the way. Approaching 31 in April, I am grateful for the positive changes, and I continue to prioritize my well-being.

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