My name is Nancy Monica, I am 60 years old. I have lost family members, my dad, sister and uncle all diagnosed with Hypertrophic cardiomyopathy. I was closely involved in my sister’s journey, she had a myectomy at Cleveland Clinic and was due to a second one shortly before she passed away from cancer. Her journey started in 2003. I had all four of my daughters checked for genetic HCM and started myself being followed by a cardiology team at a major university medical center in Chicago. After 5 years of being followed I was told “I dodged a bullet”, they indicated I was clear from HCM. I never looked back. I thought HCM stopped with my sister. I was the Telehealth Director for a busy epilepsy program tied to a major university medical center in Chicago, it was grant funded and high stress. The chest pains I often felt, were in my mind, just part of the job. In February of 2019, we were writing a Federal Grant, stress was high, I was feeling more chest pains than usual. That afternoon, I left work and said I was going to a meeting. I drove myself to the Emergency Department at our local rural hospital. I was admitted on the spot, and within 24 hours I was diagnosed with HCM from this local rural hospital. Life was a whirlwind from that point. I switched my care back to the major medical center in Chicago. I had no idea what a “Center of Excellence” was. The doctors suggested that I was in heart failure and I needed a heart transplant. Within weeks I had a pacemaker/defibrillator (ICD) placed by their electrophysiologist. The cardiology team, ran many tests, MRI’s, ECG’s, stress tests, etc. and kept talking about a “pump”. I was so naïve and had no idea what they were talking about, but I trusted this hospital. At this time, I joined the HCMA on-line group. I met a member who had just had a septal myectomy at Northwestern hospital in Chicago. Each night I scoured the HCMA groups comments. This was such a knowledgeable group of people, there were administrators who monitored the group and kept individuals on track to avoid false information from being discussed. I learned from HCMA what a Center of Excellence was, what the standard of care was, what the tests meant, etc. My husband and I decided to go to Mayo Clinic for a second opinion. When we met with Dr. Ommen at Mayo Clinic, his extreme knowledge and direct approach left us with overwhelming confidence. We never looked back. Dr. Ommen and his team immediately set up a surgery date for a septal myectomy. Within 3 months of the day I had chest pains in my office, I had a litany of tests, surgical placement of an ICD and a septal myectomy. After the initial surgery, I developed an allergic reaction to the nickel in the wires that held my chest together. It was the friends I met in the HCMA group who convinced me that my recovery was “off”. I had a second surgery 9 weeks after my myectomy to remove the wires and repair my ribs with plates.
My life took a major change and I had no knowledge of what Hypertrophic Obstructive Cardiomyopathy was. The on-line group of the HCMA became my lifeline. They were 6000+ of my closest friends. They understood every nuance of my diagnosis. Some days I could get up and conquer the world, and other days I couldn’t get out of bed. My friends and family thought this was “selective” on my part, even the neurologist I worked for thought that this was controlled by me. One day he made the comment that I was “too sick”, referring to my mental status as I was overwhelmed with my new diagnosis. Each day is a new day, I have learned to embrace every moment and appreciate the little things in life. The HCMA has become my family, without them I would be lost. HCMA has empowered me to live life to the fullest with my HCM.