I became part of a statistic seven years ago. I’m among the 20 percent of heart disease patients whose illness couldn’t be prevented. I led a healthy life — yet, here I am. The music of life slowed. Truthfully, it almost stopped, as simple daily activities became difficult.
My life was interrupted by a form of non-obstructive heart disease involving the vessels that feed my heart muscle. My large arteries were healthy. The problem lies within my coronary microvessels. The dysfunction lies within their walls, which have trouble relaxing and often constrict. When they don’t work, my heart muscle cells struggle for oxygen. Angina, shortness of breath and extreme fatigue are the results.
The tune of life became quieter, changing my abilities and momentum. Another melody began to emerge, louder and more urgent than my previous life-song. My passion for advocacy and working for awareness of non-obstructive heart disease became a source of energy. A purpose. I followed its tempo.
This change isn’t only my own; it mirrors that of so many other patients. Its urgency drives me. I feel the need to show heart disease in its entirety. We must work to turn around the impact of our number one killer of women and men in the U.S. Non-obstructive heart disease is on the rise, but if it were understood, there could be some headway against this often-silent killer.
By finding opportunities to make the best of life, I still dance to my own song. Embracing my reality doesn’t mean giving up, stopping. It means adjusting my step and listening for the changes in tempo. I have become aware of how I can manage symptoms instead of bemoaning what can’t be done. I can’t control my disease, but I can control how I move forward.
I sought out the best doctors. I found those who are curious and interested in my management of this often-frustrating condition. They reinforce the respect angina and related heart symptoms demand. Treat pain. Never push through it. Know when to sit it out and heal. Good partnerships with my doctors and self-awareness are key to living my best days.
Sometimes I wonder where heart disease would have taken me if I hadn’t sought out information and dedicated myself to spreading information about the disease. But I plan to continue advocating for myself and others. Knowledge is power. It creates better clinical care and can help others who are living with the disease.
Although the tempo of life slowed, I have adjusted to slow and steady. It has become a familiar pace, creating a clearer perspective on what I truly value. I gained focus on not only my own reactions to a chronic heart condition, but found it useful to help others. Like me, their song has changed. But it isn’t over.
We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, on this patient-focused series. Once a month, patients affected by serious and often rare diseases share their unique stories.
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