Origin Story

Introduction to the Heart of a Giant Story

February 5, 2020

12 min read

Somaneh Bouba

From a chance diagnosis in South Africa to open-heart surgery in Boston, the origin story of Bouba Diemé and the Heart of a Giant journey.

The Journey So Far

Being a heart transplant candidate not only changes the story that I thought I'd be telling, it also pushes up the timeline on the tale. While most memoir writers wait until they've completed most of their life's goals and then look back from a place of closure, the tenuous state of my heart's health affords me no such luxury.

I feel an urgency to share what I'm going through, and what I've learned on my journey to date, in hopes of helping to inspire or motivate others who face their own medical challenges and other adversities.

From Diagnosis to LVAD

In a very short period, I went through my first congestive heart failure and Dilated Cardiomyopathy (DCM) diagnosis in South Africa (December 2012); being treated by cardiologists in Dakar, Senegal, and Bamako, Mali, when I moved back home (March 2014 – June 2016); finding out that my condition was actually caused by a congenital Left Ventricular Non-Compaction Cardiomyopathy (LVNC) and that I was having life-threatening ventricular tachycardia in Davis/Sacramento, California (June 2016).

Moving with my family to Boston, MA to continue my care and live closer to Desiree's parents, living on a mobile intravenous system for 6 months, until undergoing open-heart surgery to insert the HeartMate3 Left Ventricular Assist Device (LVAD) in my heart in January 2017.

Recovery and Rebuilding

Recovery came through lots of self-motivation, family support, outstanding medical care, cardiac rehab, some martial art (Vovinam Viet Vo Dao), exercising at home, and going for frequent walks.

Professionally, I worked part-time at the Apple Store South Shore from September 2017 to June 2019, before deciding to go back to working full-time in energy. I practice martial arts twice a week in addition to cardio exercises. I am more active and involved with my sons, and my wife and I are happier together.

Why I Share My Story

I want to express my gratitude to my family, friends, and medical teams who travel this road with me, a path that has been difficult, complex, and amazing all at once, and I want to do my part for advancing health care, in particular for those at-risk and those living with heart failure and their families and caregivers.

"I'm happy to say that just a few years after learning that my heart is too big for my body, I'm thoroughly enjoying life again, every second of it. I feel ready and evermore confident to persevere. I have hope for the future, no fear. I have faith in my future, no worries. I dream again. I live again, to the fullest."

I'm staying positive, looking out for the good hearts in everyone I meet and every action I undertake. These new missions, tall orders, all, now combine with and enhance my original goals related to social entrepreneurship and giving back to communities in West Africa and Greater Boston.

Share: