Left ventricular non-compaction – LVNC

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

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.

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).

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?

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?

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.

My husband was diagnosed back in 2022 and they put him on losartan too. His blood pressure was already super low like 90/60. He took it a couple times and then quit because it made him feel light headed and dizzy. He started having syncope episodes in 2020 and they attributed it to low blood pressure. As it continued and become more frequent and he started getting more injuries from the syncope (small brain bleed) we were sent to get more testing done and that’s when they found that he had LVNC. The electrophysiologist wanted to put in a pacemaker but we refused because he is very active and wasn’t even 40 yet. So they put in a loop recorder to track his heart rate and symptoms. He had some sort of episode at least once a month for that first year and the doctors had no suggestions for us but to monitor it. So, we decided to get another opinion from Mayo in Rochester and that was the best decision ever. The loop recorder results went to our main clinic and we would inform mayo of any episodes. The final episode scared us so much and the doctor that he insisted he have surgery as soon as possible. We were flying home from our vacation and his heart paused for 4.5 seconds picked up a beat and then paused for another 22 seconds. He felt dizzy, light headed, nauseous and like he was going to pass out. We are not sure if he did as I was sleeping and he doesn’t recall for sure. The surgery he had was a clinical study for an ablation. They ended up ablating 7 spots on his heart muscle last October. He followed up with a tilt table test a couple months later and no syncope or pauses. Also there have been no episodes since. He has to follow up by wearing a holter monitor each year to check his heart rate. He also still has the loop recorder that will let us know if he has any pauses but that should get removed in just over a year as the batteries only last 3 years.