Personal Perspective: Gwen Mayes

Not that long ago, Gwen Mayes never dreamed she’d be sailing with a gentleman friend, taking an hour-long Pilates class or even hosting a block party. She will be the first to tell you she didn’t think she’d make it to 65, but she has. And she has a lot more to do…in spite of a hypertrophic cardiomyopathy (HCM) diagnosis.

For decades I lived in fear of what a hypertrophic cardiomyopathy (HCM) diagnosis would mean, but I don’t anymore. With better diagnostic methods, genetic testing and new management options available, you don’t have to either. I hope hearing my story helps you embrace the progress that is being made so you can live your life fully.

As it does for many people with HCM, my story begins before I was born. My mother was a high school senior, preparing to leave for college on a four-year scholarship to study mathematics when her dad died suddenly of a heart condition. As the oldest sibling, she declined the scholarship and went to work instead to help her family financially.

I grew up in rural Kentucky, climbing trees and doing all the things kids do. Understanding the genetics of heart disease wasn’t common back then, so no one knew until decades later that I had inherited the most common gene mutation responsible for HCM. I, however, knew early on that something wasn’t right.

In sixth grade P.E., I struggled to walk ? not run ? the 600 yards necessary to pass the presidential fitness test. I was so short of breath. I was upset, my teacher was upset, and I was so embarrassed I didn’t even tell my parents. I was involved in normal activities, such as Girl Scouts and cheerleading, but knew in the back of my mind that my inability to keep up had something to do with why my grandpa died. I’d always heard how he would have to sit down after a meal, or how he’d get very tired after gardening. He was told he had “a big heart.”

My symptoms continued. As a teenager, I fainted after giving blood. In college, I never felt that I was as strong as my friends, whether we were hiking or just at a party. Even in grad school to become a cardiothoracic physician assistant (the career choice was purely coincidental), I stayed quiet about my symptoms, but it was becoming more difficult.

A grad school assignment required me to take an EKG on myself. I worked at the hospital at night for extra money, so I went to the deserted recovery room at 2 a.m. to hook myself up for the test. I was petrified and rightfully so. Everything about the EKG was abnormal. I couldn’t find anything in my textbooks that explained what I saw.

Finally, something happened that forced me to face my condition. I nearly fainted on the Metro and literally saw the buttons on my blouse vibrate because of what was going on in my chest. I went to the ER. After examining me and hearing about my family history, the cardiologist there told me he thought I had idiopathic hypertrophic subaortic stenosis (IHSS), which is what they called HCM in 1988.

I saw a cardiologist the next week. He said I likely inherited it and then went on to tell me I had a shortened life expectancy, should avoid having children and could expect to have even more psychological problems than physical ones.

“Does this mean I could die at any minute?” I asked. He said I could. Any plans I had for my life went out the window.

My mother was devastated to learn she’d passed on the condition that took her father. Although she may have carried the gene, too, she was asymptomatic. She died at 66 as a result of ovarian cancer and never had genetic testing.

The condition worsened in my 30s with lots of physical exertion issues and many ER visits. My doctor prescribed a variety of drugs to help slow my heart — beta blockers, calcium channel blockers, antiarrhythmics. Because it was considered a pre-existing condition, I couldn’t get health insurance until ObamaCare, which added to my concerns.

I threw myself into my career. I also earned my law degree. But, I kept my condition to myself because I didn’t want people to look at me differently. I had accomplished so much, and I didn’t want to appear fragile.

My mindset changed about 10 years ago when I realized how powerful patients can be. We have a responsibility to help facilitate change, pass laws and more. I’m committed to helping patients find their voice and get support, so now I tell my story. I created a consulting firm to help patients share their stories, and I work with biopharmaceutical and medical device companies, policy firms, PR firms and patient advocacy organizations to tell a more hopeful story. I’m currently giving feedback through the Institute for Clinical and Economic Review about a possible new HCM treatment.

Today, I still take a combination of drugs and have had bouts of AFIB. Every three years I go to a Center of Excellence to be evaluated for further treatment. And while HCM has shaped my life, I am happy to say it is a very full life — and it’s not over yet.