My HCM journey began on January 4, 2014 but my diagnosis of HCM took 2 more years.  I was getting ready to head to work, and I felt my heart start racing. I was still feeling ok, just annoyed at this point, so I headed to work. By the time I reached the office, my heart was still racing, and I was pretty wiped out. A coworker noticed I wasn't doing well, and I told her I needed to go to the ER.  At the ER, a doctor confirmed I was in rapid atrial fibrillation (afib).  I was cardioverted (shocked into a normal rhythm) and admitted.

This was the beginning of a 2 year odyssey to get a proper diagnosis. I was told that because I was a young woman with no prior medical history, there was no way it could be heart related.  I was told I needed to stop eating salt, and that I needed to lose weight and get out and exercise, so in other terms I was blamed for my symptoms.  I was told that my left ventricle was enlarged because I had long-term, uncontrolled high blood pressure. The doctors were blaming me, and I started blaming myself.  It took 2 years and a new doctor who finally looked at the whole picture and agreed with me that something wasn’t right.  He sent me in for additional testing, including a cardiac MRI.  Later that night, after the MRI, the doctor called me and told me that I had Hypertrophic Cardiomyopathy (HCM).  I was told that I was obstructed and would need open heart surgery to repair it. That’s a whole lot to take in over a phone call!  That same night I found the HCMA.  I started reading and learning as much as I could about HCM.  I found another cardiologist that really knew about HCM at an HCMA Recognized Center of Excellence (COE) so that I could receive proper care.  I cannot even begin to tell you the night and day difference in care between a local cardiologist and a cardiologist that treats patients with HCM in a high-volume center.  I walked out of my first appointment with tears in my eyes.  Tears of gratitude because someone finally understood!  My symptoms weren't being dismissed, my concerns were being addressed.  They heard my questions and made sure I understood the answers.  We went over various treatment plans and together put together a plan that would work for all of us.