hands holding cards deal out the king of hearts

The Diagnosis Is in: Now What? (Part 1)

This is part 1 of a two-part series. Part 2 is “The Diagnosis is in: Now What? (Part 2)"

The diagnosis is in. Now what? What follows is a description of a part of my post-diagnosis journey. To read more, check out my blog, Heart of a Giant.

Where would I even begin?

In difficult situations, I often avoid asking questions because I know I’ll feel compelled to act on any newly acquired knowledge, and in circumstances where I cannot properly effect change, I get intensely frustrated. In this case, I suspected that asking too many questions might lead me to panic, and besides, where would I even begin?

I could not stop myself

Despite these intuitions that the timing wasn’t right to dig too deeply into the details of my new diagnosis, at night, exhausted after spending all day in the ER, I went on my computer and typed “cardiomyopathy” and “dilated cardiomyopathy” into the search field. Feeling my heart sink upon reading more about these conditions, I could not stop myself from going deeper into that dark night by googling “How long do I have to live with cardiomyopathy?” and “What will change when I have cardiomyopathy?” This was a bad move at this juncture, and what we learned certainly didn’t ease our minds in the slightest.

Heartofagiant - 2012, Bouba and Des in Johannesburg, South Africa

It’s official

Three days later, we went back to Morningside Mediclinic (Sandton, Johannesburg - South Africa) and the ER doctor’s fears were confirmed when I was officially diagnosed with dilated cardiomyopathy (DCM) by the cardiologist, Dr. Leonard (Len) Steingo. Beyond the visual symptoms, he explained that the key clues were the measurements of the heart (based on the size of mine, proportionally I would be 12 feet tall rather than my actual height of 6 feet, 8 inches); the ejection fraction (EF), which is the measurement of the percentage of blood that leaves your heart each time it contracts (mine was 33 percent instead of 55 to 70 percent for normal hearts); and ProBNP, a peptide secreted by the heart to regulate blood pressure (mine was around 2800 instead of below 180). The appointment ended with prescribed medication, a treatment plan, and words of support from the doctor.

Dr. Leonard Steingo, Cardiologist

My deep disappointment

Despite these steady and appreciated encouragements, I spent the next three months in withdrawal, trying to deal with my deep disappointment with this new life reality. I had so much that I wanted to accomplish, and I had dreams of making an impact on the world. All of this seemed in doubt now based on my tenuous physical condition.

I was never alone

Fortunately, though I tried to isolate myself in an attempt to spare others and myself more pain, I was never alone.

Heart failure advocate, Bouba Diemé having a moment of solitude

Desirée and my close friends continued to be there for me, sharing any available information, advice, and motivation. From afar, my mom, a doctor herself, prayed daily and offered steady support. She wanted to know every detail, from the initial diagnosis to the chemical components of my medications. My dad took it lightly at first but would later tell me to work at it and face the condition with courage and hope.

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