Hi, it’s me again, Heart of a Giant. Here’s a short bio I recently shared and my personal, professional profile.

My journey with my heart defect has been long, with multiple events, milestones, locations, and more. So, whenever I am allowed to – I feel privileged to talk about my lived experience with the illness, how I approach my illness, the social world of illness, being healthy in illness, living with my LVAD, my (future) heart transplant journey, the challenges and how my quality of life improved over the years and whatever is next for me.

My heart condition (Left ventricular non-compaction cardiomyopathy, LVNC) is a very rare congenital cardiomyopathy – a heart muscle disorder that occurs when the lower left chamber of the heart, which helps the heart pump blood, does not develop correctly. Instead of the muscle in the left ventricle being smooth and firm, it is thick and appears spongy. Over time, this can make it harder for the heart to pump blood to the rest of your body can lead to heart failure (as it happened with me). It can also lead to malignant irregular heartbeats known as arrhythmias, risks of clots in a blood vessel that can lead to stroke for example, and left ventricular dysfunction.