Paige Priester

I was diagnosed with non-obstructed Hypertrophic Cardiomyopathy (HCM) 20 years ago (age 36), shortly after the birth of my second child. I was having mild pains in my chest area and arrhythmias at the time. My brother was diagnosed with obstructive HCM a year before me, and my family doctor was about to dismiss my symptoms as muscular pains from holding my baby for hours, but at the last minute, he ordered an EKG. After finding an irregularity, he ordered an Echocardiogram. I was soon diagnosed with IHSS (Idiopathic Hypertrophic Subaortic Stenosis); they also called it ASH (Asymmetric Septal Hypertrophy) in my medical notes. Both are old names for HCM. 

As my HCM journey started, I was told not to worry about my diagnosis but to call them if my heart felt any pounding sensations. I was followed yearly with Echocardiograms. Somewhere in the first few years of my diagnosis, I learned this disease kills people suddenly. I didn't realize I had family members that most likely died of HCM. My uncle died of SCA (sudden cardiac arrest) at 42, and my grandmother at 63. I was told they both had had heart attacks, and their hearts had "hardened." Some of my relatives are still confused about the difference between CAD (coronary artery disease) and HCM. 

Although I lived symptom-free for almost another decade, the arrhythmias were frightening. In 2009, I was still active and an avid runner, but I started having near syncope events and runs of Nonsustained VTs (ventricular tachycardia). Due to my family history of unexplained sudden cardiac death, it was advised by my doctor that I have an ICD (Implantable Cardiac Defibrillator) placed. My ICD was implanted in 2011, and after recovery, I continued to run and live a relatively "normal" life. During this time, I became very knowledgeable about HCM. That was also the year I transferred my care to Mayo Clinic in Jacksonville, Florida. They followed me closely and answered my questions as my symptoms progressed.

In 2016, I was no longer able to run. My arrhythmias affected my life to the point of many ER visits, even by rescue. I started to slowly stop doing many activities because I was getting out of breath. I started taking heart medication, but it was difficult to tolerate beta blockers because I have low blood pressure. The summer heat affected me, which was terrible because I love being outside and living in Florida. I dreaded living in a two-story house. My family noticed I was slowing down in just about every activity. In 2019, my cardiologist ordered a cardiac catheterization, and it was discovered I also had Myocardial Bridging, another congenital heart condition often associated with HCM patients. By 2020, I had significant diastolic heart failure. In the summer of 2022, I could no longer keep up with my life. I had lived years telling myself and those around me that I was happy about what I could still do, not the things I could not do.  After consulting with the Mayo doctors many times, I felt ready to have the Apical Myectomy and Myocardial Bridge Unroofing procedures. I understood that these procedures would not cure my HCM but would most likely improve my heart failure and symptoms.

Open heart surgery was the most challenging thing I've ever done. I was scared, but I had confidence in my cardiac team. Recovery was difficult, both physically and emotionally. Still, the excellent doctors, nurses, and family and friends surrounding me gave me the strength to move forward with recovery. Today I can briskly walk miles and keep up with my two-year-old granddaughter. I no longer dread stairs. I even kayaked five miles six months post-op. When I think back to the past few years, it's emotional to remember how bad I felt and didn't realize it because it was a slow-progressing heart failure. Everyone's stories are different living with HCM, but the fears are similar.  HCMA support has helped me understand my care options and navigate life's challenges with HCM. 

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