Hi, my name is Bouba. Based on the size of my heart, I should be 12ft tall. But, I am only 6ft7in.
I was born with a congenital heart condition and live at the risk of sudden cardiac arrest for a long while. I survived congestive heart failure and an LVAD open heart surgery. Currently, I am on the waiting for a heart transplant.
I had a pretty normal life growing up, mostly playing and practising sports with my siblings or my friends. There had never been any major signs of health issues and nothing abnormal was noticed at my check-up and other doctors. However, I recall feeling some occasional dizziness, light-headedness and a gallop heart rhythm. I didn’t think much of these and would usually try harder or simply get some rest to recover and go on.
Fast forward to late 2012, I was 26 and living in Johannesburg, South Africa. For about a month, I was having a persistent cough, chest pains and tightness, some dyspnea and also feeling lower in energy. One Saturday afternoon, the symptoms were becoming unbearable, so we went to the emergency room. I was diagnosed with dilated cardiomyopathy or DCM.
From the tests and x-rays, the doctors noticed a much-enlarged heart with a reduced heart function and other signs of congestive heart failure (CHF). In my head, all came to a standstill. ‘I’m only 26’, I tell myself…
It must have been around 4 pm, my partner (who would later become my lovely wife) and I had already been in the ER for many hours. After informing me of the diagnosis, the doctor asked if my feet were swollen and about other signs of a heart attack. For minutes, the doctor and my partner would talk about the condition - heart size, measurements, signs, and symptoms… All I could remember about the conversation is ‘come back to us if your feet start to swell or if you start coughing blood…’ We left the ER and drove home in complete shock.
Three days later, a cardiologist validated the ER doctor’s diagnosis. Beyond the visual symptoms, the key indicators included measurement of the heart, the ejection fraction or EF (mine was 33% instead of 55-70% for normal hearts), ProBNP (~2800 instead of below 180), and others. He talked about the disease, potential causes, its signs and symptoms, and the available treatments. At that time, we didn’t know the true nature of the condition or its real cause. It was assumed that the cause of my condition was possibly viral. We discussed the common outcomes. The appointment ended with medication and treatment plans, words of support and great encouragements - ‘Be strong. You’ll be fine’.
I spent the next two months in withdrawal and isolation, but I was never alone. First, my partner and my close friends wouldn’t leave me alone, looking for any available information, advice and words of support. From far away, my mum (a doctor herself) would find her way in and support, and always asking for every detail, from the diagnosis to the chemical components of medications. My dad took it lightly at first but would later tell me to work at it and face the condition.
At the beginning, my energy levels were extremely low. It was a challenging time physically and mentally. For instance, by 10 am, I would feel like I had been sprinting a whole day. I was still adapting to the medication. Luckily, my body responded well to the treatment. I made adjustments to my diet, my exercise regime... everything.
Previously in my life, I had been through a number of injuries that required surgical procedures and other difficult circumstances. But this time around was on a different level. Dealing with the new reality mentally and spiritually were the toughest. There was a lot going through my mind, from facing death to realizing that my life projections would all have to change.
As one can imagine, with much time to think, worrying thoughts often played on my mind, coupled with long moments of prayers, questioning, and meditation. I have learnt to deal with this in many ways. I tried to stay focused on the positive rather than letting negative thoughts hurt me. Everybody has his/her particular way of dealing with a situation like this. My way was simply talking to myself about my concerns and re-affirming the things that drive me. I’d take a worry, look at it head-on, and deal with it. And then move on to the next one.
My first follow-up visit was at 6 weeks, then at 3 months. By then, my symptoms had almost disappeared and I was starting to get stronger. Though, still weaker and limited in energy, I could keep up with work and life. A year after, I would write, “My heart condition has given me an inner strength I would never have found otherwise.”
A bit more than a year after my DCM diagnosis I was loving life again. I had been making good progress health-wise, with my energy levels and in other areas of my life such as relationships and focus. I had managed to carry out my obligations at work uninterrupted, same with my studies (Masters Degree) and other commitments (grass-root organizations and communities).
I had not let the beast define me and I would slowly ‘get my life back on track’. The short chapter experienced turned out to be a good preparation for what was about to come. At the end of 2014, with my little family and I moved to Dakar, Senegal (my city of birth). By then, I had gotten engaged, become a father, and finished with my degree.
Before leaving for Senegal, I had a cardiac exam. My heart function has improved to the point that it almost looked ‘normal’ and EF was 45% and ProBNP at 684. I felt much stronger and was back to practising some martial arts, playing football and other activities on a regular basis.
The condition was well managed the following years. I remained stable until March 2016, when my symptoms came back. Doctors in Mali managed to stabilize me and all seemed ok then.
The final diagnosis was established while I was travelling for an exchange program in California. Two days into my trip, my symptoms had come back again. This time, I was also vomiting, plus, my body was retaining fluids. I was taken to the ER and it turned out that my condition was a rare form of congenital heart defect known as Left Ventricular Non-Compaction (LVNC.) In addition, we discovered that I was at the risk of sudden cardiac death all along, due to irregular heartbeats called as v-tach or VT. As a precautionary measure, an automatic implantable cardioverter defibrillator (AICD) was inserted into my chest.
Unfortunately, I didn’t respond well to the medication I was discharged with. The debilitating effect of my heart condition had started to show. My cardiac muscle had deteriorated to the point that I was more and more confined to bed. My heart’s ability to function had changed drastically. After four weeks and two other trips to the ER, I called the cardiology team and got back to the hospital mid-July. I had already reached end-stage heart failure.
I was diagnosed with acute decompensated heart failure, showing signs of non-rheumatic mitral regurgitation and lactic acid acidosis. I underwent an additional test, a right heart catheterization, which showed evidence of severe pressure in my heart and lungs and a reduced cardiac index (1.2 - less than half of normal capacity). Later on, we learnt that I had acute chronic combined systolic and diastolic congestive heart failure (CHF).
Following the test, I was put on intravenous Milrinone Lactate drips and Lasix (Furosemide) treatments. Milrinone was a true ‘miracle juice’. I responded well to the unloading therapy. Symptoms mostly resolved within 24 hours, especially the coughing stopped and I started feeling better. I remained asymptomatic for the remainder of the hospitalization. However, Milrinone weaning was not attempted due to low cardiac index despite a high dose of Milrinone. Three weeks later, I was discharged with Milrinone mobile/home infusion (and other prescriptions) as a transition to further care.
Once my condition was stable, my family and I moved to Boston in August 2016, to continue my care. We got closer to another great health care system that is most innovative and comprehensive while living near family. Fortunately, I was found to be a good candidate for transplant. And officially placed on the waiting list in October 2016 on my 30th birthday.
However, while I wait for a donor organ, my heart needs some support. The device for that job is the Left Ventricular Assist Device (LVAD), implanted inside the chest. Luckily, all is going well with LVAD and the treatments, while we wait for a new heart.
By sharing my journey, I hope to make my circumstances more impactful and a meaningful learning experience. And, at the same time, express to all that carry my family and me through our journey, my gratitude for how fortunate I am.
To read more about Bouba, you can follow his blog at www.heartofagiant.org