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Hi Friends: as explained a few weeks ago, I have had the honour of making the welcoming remarks at this year's Affairs of the Heart: Living with Cardiomyopathy Conference. Organised by the SHaRe Registry, the event took place on 19 May 2018, here in Boston.
- Below are the notes I shared at the opening of the Cardiomyopathy conference.
- The videos are available on the SHaRe Registry Youtube channel Link here.
Hi, my name is Bouba Diemé. I am from Mali and Senegal. I live here in Boston with my wife and our 3-year old son.
It is my great honour to welcome you all here today and introduce our distinguished specialists. Before we get started, I would like to share a bit of my story to illustrate the importance of such events for those of us who live with the illness.
In December 2012, I was living in Johannesburg, South Africa and had been suffering from a persistent cough and chest pain when I knew I needed immediate attention. One Saturday I drove to the emergency room where a chest x-ray revealed that my heart was larger than normal. That Tuesday I was officially diagnosed with dilated cardiomyopathy, DCM.
I started a treatment plan that helped stabilize my condition and life progressed almost as normal. I got married, completed grad school, my son was born, we moved to Senegal and I started my own (smart energy services) business.
Then in January 2016, I started coughing again. This time, it persisted for several months as my doctors in Senegal and Mali worked to figure out what was the best course of treatment. Eventually, an aggressive fluid unloading treatment helped calm the symptoms down. And we felt things were back in control again.
This happened just in time to enable me to travel across the Atlantic and the US, to Davis, California (near Sacramento) for an important fellowship opportunity. But, shortly after I arrived, I felt ill again. When I went to the hospital at Sutter Sacramento, doctors delivered a more detailed diagnosis. I had a congenital heart condition known as left ventricular non-compaction cardiomyopathy (LVNC), which had caused my heart muscle to form incorrectly at birth, as well as ventricular tachycardia or v-tach, a heart rhythm disorder. My prognosis at this time was a heart transplant.
Recognizing the severity of the situation and the complexity of the road ahead, we decided to move closer to my wife’s family in Boston and we were referred to the team here at the Brigham. They confirmed my diagnosis and recommended I have an LVAD implanted while I awaited a heart transplant.
As of today, I have been living with my LVAD for 15 months. It has transformed my quality of life, but it has been a journey.
Three hundred feet – that was as far as I could walk in April of last year before tiring out. That was 3 months after the implant. By September, I topped that record by quite a bit at the 2017 Boston Heart Walk, organized by the American Heart Association. I walked six miles along the Esplanade with family, friends and members of my Brigham’s care teams. I felt so good that after the walk, my family and I kept going, clocking another six miles the same day. It was a moment of joy and happiness for me.
Since then I have started to rebuild my career, I practice martial arts, wrestle with my son. And, my wife and I are preparing for the arrival of twin boys this summer.
Today is a culmination of the immense work that has gone into making sure that I can stand here today and I am grateful.
I am here to express my gratitude to health professionals - doctors, nurses and everyone involved in my care. They are not only helping me to stay alive but to be able, to be productive and to be useful to the World. Because of this work, I still have faith in life, hope for tomorrow, and dreams for the future.
Now, to kick things off, our first talk is about HCM and DCM: What are they and how do we treat them - Presented by two highly distinguished specialists in the field of cardiovascular disease: Dr Prem S. Shekar and Dr Neal K. Lakdawala (who are both part of my medical care team).
Please check back often for updates. Updates may be infrequent, but continue to stop by for anything new!
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