Hi, it’s me again, Heart of a Giant. Here’s a short bio I recently shared and my personal, professional profile.
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Official Site – heartofagiant.net
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Personal Health Blog – heartofagiant.net/blog
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Heart of a Giant Foundation, HGF – heartofagiant.org
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Podcast – livingwithheartdisease.show
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Events – heartofagiant.net/events
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Store – heartofagiant.shop
Find Me Elsewhere On The Web
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I recently began to write for heart-failure.net – read those publications here
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Look me up, “Bouba Diemé”, “Heartofagiant”, or “Bouba Heartofagiant”
My journey with my heart defect has been long, with multiple events, milestones, loca- tions, 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 challen-ges 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.
In June 2016, I flew from Dakar to Davis, California, as part of the Young African Leaders Initiative (YALI). I was gratefully selected to be among the Mandela Washington Fellowship recipients, launched by the then President Barack H. Obama, to encourage young people involved in Africa’s development.
The plan was to complete a six-week trip at the UC Davis’ Energy Institute, followed by an additional six weeks with Current, Powered by GE. This startup subsidiary was established by General Electric (GE), in Boston, for professional development.
That trip was disrupted when a few days into it, my symptoms had come back in full force — retaining fluids and vomiting to add to an already problematic situation. I became very ill and ended up with a surprising diagnosis. I was having congestive heart failure (CHF). It turned out that I had a rare form of a heart defect I’d unknowingly had since birth.
The program staff took me to Urgent Care in Davis, and the Emergency services immediately moved me to Sutter Medical Center in Sacramento for further testing. After a few days of tests, a cardiac MRI, and observation, we learned that I had a rare form of a congenital heart defect known as Left Ventricular Non-Compaction Cardiomyopathy or LVNC.
The walls of the left ventricle of my heart are soft and spongy, rather than smooth and compacted as they should be. In addition to this, we also discovered that I was at the risk of sudden cardiac arrest due to irregular heart rhythms — ventricular tachycardia or v-tach, which is a type of abnormal heart rhythm called arrhythmia. It occurs when the lower chamber of the heart beats too fast to pump appropriately, and as a result, the body doesn’t receive enough oxygenated blood.
As a precautionary measure, the medical team implanted an Automated Implantable Cardioverter Defibrillator, AICD, inside my chest before I left the hospital. This device can perform cardioversion, defibrillation, and pacing of the heart. Incidentally, less than a week after the implant, the device prevented a life-threatening cardiac arrhythmia that would have been fatal to me. Also, the doctors had prescribed me some oral medicine to treat arrhythmia and my cardiomyopathy. However, after four weeks, I was still sick, and my condition was worsening. To my dismay, my heart’s ability to function had already changed drastically, and my cardiac muscles deteriorated. The debilitating effect of my heart condition started to show.
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