I live in the DC area, in Alexandria, Virginia with my husband and my 9-year-old daughter. I learned that I have HCM three years ago and since then I have been on a variety of medications and had two surgeries in an attempt to treat my condition and feel better.
I was diagnosed not long after my brother passed away from dilated cardiomyopathy. We don’t know the origin of his cardiomyopathy. We suspect it might have been related to HCM and presented as a “burned out” form of HCM, but we will never really know for sure. Eventually, he received approval for a transplant, he received a donor heart, but at the time of his transplant, it was just too late for him.
As my brother’s heart got worse, I started to see my own symptoms. I was experiencing my own issues with shortness of breath, fatigue upon the slightest exertion. Of course, I didn’t want my family to know that.
When I received my diagnosis, I was just a mess. I had lost my younger brother just a few months prior, I didn’t know what was causing my own heart problems, and I was afraid that my heart condition was going to follow the same path as my brother.