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What you need to know about Left Ventricle Non-compaction

Updated: Aug 2, 2021

I was diagnosed with Left Ventricle Non-compaction by accident while doing testing for a POTS diagnosis in 2015. Left Ventricle Non-compaction is a form of cardiomyopathy that affects the muscle wall of the left ventricle. The muscle wall does not fully develop or compact to become smooth. Instead the muscle wall appears spongy due to channels into the muscle called trabeculations. The symptoms for LVNC are very similar to POTS which is frustrating for me because it is hard to determine if my symptoms are POTS related or LVNC related.

Many people who have LVNC will not experience symptoms, sometimes even when they actually have complications. Due to this people diagnosed with LVNC are usually monitored on a yearly basis. I personally have to do cardiac testing at least once a year in order to ensure my heart is still functioning properly. There are a range of tests used to monitor LVNC including, echocardiogram, holter monitor, exercise testing, cardiac MRI, blood testing, etc. I don't do all of these tests every year, some are done every couple of years or as necessary.

I am currently doing my yearly cardiac testing

to ensure my heart is healthy! This year I moved to a new cardiologist after leaving my pediatric cardiologist. My new cardiologist decided to do a full work up since I had not done one since I was diagnosed. She ordered an echocardiogram, exercise test, blood work, a cardiac MRI and a holter monitor test. The echocardiogram is always the easiest because it is essentially an ultrasound of your heart. Exercise testing usually includes walking on a treadmill hooked up to different machines with a breathing mask on while the incline and speed is increased in intervals. A cardiac MRI includes getting dressed up all fancy and being put in an MRI machine for an hour with breathing cues every few minutes to ensure the pictures are clear. The holter monitor is kind of like a miniature EKG machine that has a small recording device connected to electrodes which are placed on the skin. A holter monitor can be worn for any period of time. This time my doctor decided that I should wear it for two days. That's two days of not taking it off or getting it wet.

All my tests this year came back fairly normal. The most important aspect in these tests is my ejection fraction or EF. The ejection fraction tells you how well your left ventricle pumps blood with every heart beat. This time my EF was in a low normal range so no intervention or treatment is necessary yet. The plan is to continue yearly monitoring and hoping that no complications develop. I am grateful that my LVNC was diagnosed and that my heart continues to function pretty well!

1 Comment

Apr 19, 2023

I am looking to find anyone who is young and has POTS and LNVC. I have a friend who's daughter is going through this and can't seem to find doctors. She has already had 1 ablation.

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