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– 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.
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.
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.
- Dr Prem S. Shekar is the chief of the Division of Cardiac Surgery and surgical director of the Heart and Vascular Center at Brigham and Women’s Hospital. In addition, he is an assistant professor of surgery at Harvard Medical School.
- Dr Neal K. Lakdawala is a cardiovascular medicine specialist at Brigham and Women’s Hospital. He is also an instructor in medicine at the Harvard Medical School.
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