Featured photo: Moment of solitude, wondering to live or not to live: what next? (2013 New Year’s at the beach in Durban, RSA)

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 irregular tachycardia or arrhythmia know as Ventricular Tachycardia (V-tach or VT)  in Davis/Sacramento, CA (June 2016);

• Moving with my family to Boston, MA to continue my care and live closer to Desiree’s parents, living a mobile intravenous system for 6-month; until…

• Undergoing open-heart surgery to insert the HearMate3 Left Ventricular Assist Device (LVAD) in my heart in January 2017, … Then,

• Recovering 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.

Admittedly, it is a very tough and challenging process. Amongst others, I am talking about dealing with: 

• Trauma: This can be a very lonely experience. Only you truly know what it was like to go through that traumatic event, this very life-changing, horrific experience. There may be other people with you at the time, no one really knows what it was like to be you at that moment from your vantage point. Then, you have to navigate relationships, mood changes, and more frustrations.

• Avoidance symptoms, sometimes, I just want to be alone, I can’t leave my room or my house. And avoidance can also have the effect of shrinking someone’s life, such that there are very few places I end up feeling comfortable going to.

• Negative changes in moods and beliefs: I’d also get in these moods where I can’t tolerate anybody.

• Avoidance of the reminders of the traumatic moments: I just get numb and I don’t want to talk about it. It’s hard to shake the feelings.

• Hyperarousal: sometimes, I just have a very short fuse. I feel like I am ready to snap.

• Also, I have been through many low points, including dealing with suicide ideation.

Mental health team – L-to-R:

Amanda Leone and Rahul Gupta, MD (Psychiatry) and Monique Cerundolo (Chaplain).

Thankfully with the help of some psychotherapy, and other activities, I have been finding ways to feel connected to others, to express emotions, to share part of what my experiences have been, either about the times I felt sick or my struggles with my conditions. All of these have certainly been helping with my long-term recovery and my ability to be part of my communities in a positive way.

It has been a journey! But, thankfully, my quality of life transformed, to the point that I am now back to working full-time, developing new social projects, being physically active in sports, and more important present to enjoy incredible moments with my wife, our three sons and the family and our communities.

On a professional level, I have since started to rebuild my career (I worked part-time at the Apple Store South Shore, from September 2017 to June 2019; before, I decided to go back to working full-time in energy that July). 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.  

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.