My name is Bouba and I hail from Mali and Senegal. I currently live in Boston with my wife and our three children, two of whom are toddler twins.
My life's experiences have led me to pursue a professional background in engineering -- emphasising in electrical engineering and telecommunications. I have been a part of many projects surrounding my background and social entrepreneurship -- incorporating a focus surrounding energy, telecoms, health, and the ability to improve peoples' lives through technological innovation. I have also been involved in my community through several youth-driven initiatives that focus on peace-building and development.
During my spare time, I recharge by spending time with my family, staying active through various sports, and reading when I am able.
I had a pretty normal upbringing, to simply put it. I was a sports-loving boy who spent time with his siblings and hung out with the friends and neighborhood kids. I had never thought that my health would ever take the turn the way it did. Feeling invincible, I stayed extremely active and have remained that way ever since. While there were some bouts of dizziness, light-headedness and I noticed a gallop heart rhythm, it never occurred to me that something wasn't right at the time — cape flowing in the wind without a falter.
Life was going well since then, but a nagging uneasiness in the back of my mind seemed to haunt me day after day. An uneasiness that would rear its head in late 2012, where my cape became tattered and worn.
I was a young 26-year-old living in Johannesburg, South Africa. I had just met the love of my life and work was going extremely well. I felt like I was on top of the world. However, I had a cough that persisted, my energy levels were lessening, and I felt a tightness in my chest and shallowness to my breath. These were the warning signs that I had known since I was a child — that nagging thought that made me remember that I was indeed, human. A month passed by and the symptoms progressively became worse and downright unbearable. I then went to the Morningside Mediclinic to find out more about what I was feeling. The physicians suggested a few tests and sure enough, I was diagnosed with dilated cardiomyopathy or DCM. My heart was enlarged and I was already showing signs of congestive heart failure or CHF.
This in itself brought me back to reality — that life is too short. There are warning signs that seem like nothing, but then become more apparent as time goes on. I realized that I needed to make some changes and to make sure that my cape kept flying strongly against the headwinds of what came next. I then embarked on a journey of recovery and never looked back.
Dakar - Senegal (August 2015).
In the early stages, I responded well to the treatments. My health gradually came back and I was feeling better than I did when I was diagnosed. And as life continued, so did the many blessings that came my way. By the end of 2014, I had been married, our family welcomed our first child, and we had moved to Dakar, Senegal. But within those blessings, there are just some reminders that we don’t want to have. March 2016 came around and the same symptoms that I had fought before came back. While we did manage to control them and get back to some semblance of normalcy, a 22-hour flight from Dakar to California proved too taxing for me and I started becoming sick again.
The trip to California was for the Mandela Washington Fellowship (MWF) at the University of California, Davis — a sub-category under the Young African Leadership Initiative (YALI) initiated by President Barack Obama. A few days into my trip, my symptoms had come back in full force — retaining fluids and vomiting to add to an already problematic situation.
The program staff took me to Urgent Care in Davis and I was immediately moved to Sutter Medical Center in Sacramento for further testing. After a few days of tests, a cardiac MRI, and observation, it was revealed that I had a rare form of a congenital heart defect known as Left Ventricular Non-Compaction Cardiomyopathy or LVNC. Essentially, 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 all along I was at the risk of sudden cardiac arrest due to irregular heart rhythms -- ventricular tachycardia, v-tach or VT. As a precautionary measure, the medical team implanted an Automated Implantable Cardioverter Defibrillator, AICD inside my chest before I was released. 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. My cape, now unable to catch even the faintest breeze, was a signal for the worst news. I was reaching a point of end-stage heart failure. A fruitful life coming to a screeching halt. I didn’t know if there were any other options and I braced for what was to come. In my case, the condition was now severe, a heart transplant is considered my best option. In order to maintain my cardiac function in the short-term, I needed constant Milrinone intravenous infusion.
To my surprise, I responded well to this medication. My symptoms almost resolved immediately - the coughing disappeared and the excess liquid my body was retaining removed. I started feeling better and I was able to be a bit active once again. Once my condition was stabilized with the Milrinone solution, my family and I moved to Boston in late 2016, to continue my care and recovery. We moved closer to an innovative and comprehensive health care system, while simultaneously living in close proximity to the family -- Brigham and Women's Hospital, BWH. After some evaluation, I was found to be a good candidate for a heart transplant and officially placed on the waiting list in the same year.
We’ve decided that while I waited for a donor organ, my heart would be supported by a Left Ventricular Assist Device or LVAD implanted into my chest. This pump system provides a bypass path between the heart and the Aorta (the main artery that carries blood away from the heart to supply blood to the rest of the body), thus helping to alleviate some of the heart’s workload and pressure.
I underwent my open-heart surgery for the LVAD in the second week of January 2017. The procedure was a success and the whole experience, transformative. Three weeks after, I walked out of the hospital on my own power, well on my way to a sound recovery. I have been gaining back strength since and I am becoming more active again.
LVAD Surgery at the Brigham - ICU then Recovery January 2017
Three months after the operation, I signed up for a cardiac rehabilitation program at the Boston Medical Center (BMC), to further strengthen and improve my functional capacity. This program helped increase my oxygen intake, endurance, and quality of life factors. In just a few months, I had greatly improved my health and was on the smooth road to recovery.
My quality of life has tremendously improved in a short time and I have felt stronger and stronger ever since. I was slowly getting back to feeling invincible — my cape now repaired and mostly able to flap with even the strongest winds. I was able to walk longer distances, climb flights of stairs, work, and safely stay active with my son.
At Cardiac Rehabilitation with my son (June 2017)
2017 Father's Day in Boston - MA
I returned to work in late 2017 and had big news for the family. We were once again pregnant with our twins — whom we welcomed to this world in July of 2018.
I never realized that I would live in Boston. The community has been so great to me and I am loving every passing moment. While life continues, we know that each day would bring me closer to a heart transplant. As I looked back, my focused narrowed in and I figured a few things that I need to do for the sake of my health and the prosperity of my family:
Maintain my health to the fullest
Become as strong as I can — physically, mentally, and emotionally
Be much more active and support my family in the home environment and in my professional spaces.
Be available and accessible, at all times, by the medical team for when a good donor heart is found.
2018 in Boston - Heart Walk, With my loving Wife, Twins and Big brother
It's been quite a journey for my family and me — with each passing day filled with the ups and downs of life. As we take these small, careful steps forward, I look back to see where I have flown, where I have landed, and when I was unable to soar. But through perseverance, hope, and faith, I’m still standing. My family and I are prospering through the many people in our family, friends, and community. It is at this moment that I extend a deep and heartfelt, “Thank you” to those who offered me the great support and encouragement along the way. To those who are on my medical team, I thank you for every minute of each passing day. No one knows more love than you, who gave me more than just a fighting chance.
Thank you for walking with me on this journey. Stay tuned for what comes next.