“There is absolutely nothing wrong with your lungs,” he proclaimed. A wave of relief started to wash over me.

“But,” he continued, “has anyone ever told you that you have a REALLY pronounced heart murmur?”

It was February 28, 2011, and I was 32 years old. Those words were spoken by a pulmonologist, after I completed a series of breathing tests. I made the appointment, thinking frequent shortness of breath meant I had developed asthma. Instead, I was diagnosed with Hypertrophic Cardiomyopathy (HCM) and referred to a cardiologist.

In my first cardiology appointment, I was told I would likely need open-heart surgery to relieve my symptoms. I was so overwhelmed by the diagnosis and undereducated about the disease that I couldn't understand why anyone would recommend such drastic measures. For a year, I tried beta blockers and calcium channel blockers to find relief, but none were successful.

Early in 2012, I found a website, 4hcm.org. It was my first exposure to educational information about HCM and a community of other patients. I also discovered the Centers of Excellence (COEs). Although there were only 12 at the time, I was fortunate to live close to one of the best.

I met Dr. Marty Maron at Tufts Medical Center in April 2012. As part of our appointment, he turned his computer screen towards me and thoroughly talked me through my own Cardiac MRI imaging. At the conclusion of our lengthy appointment, I finally understood what HCM was and why my previous cardiologist recommended open-heart surgery, a septal myectomy.

Yet, fear took over. It was one thing to understand what my disease was and how my obstruction was impacting blood flow through my heart. It was quite another to volunteer myself for open-heart surgery. I avoided facing the reality of what I needed to do for long enough that my quality of life began to decline. It took many discussions with Dr. Maron, Lisa Salberg, and others for me to finally go through with the surgery in October 2016…more than 5½ years after my initial diagnosis.

My recovery process was longer and more complicated than anticipated. I received an ICD (Implantable Cardioverter Defibrillator, which is both a pacemaker and a defibrillator) due to complete heart block caused by the surgery, and I developed a long-term case of pericarditis, inflammation of the lining of the heart. Ten months of cardiac rehab helped to set me back on the right path, and once I was fully recovered, my symptoms were significantly improved.
I return to Boston every year for a check-up with Dr. Maron, who is now at Lahey Medical Center in Burlington, MA. My ICD is also regularly monitored, and I had one battery change/lead extraction surgery in 2024.

Should I have acted sooner to have the myectomy? Probably. But as Dr. Maron once told me, I had the surgery at the exact right time for me because I wouldn’t have been truly ready otherwise.

Since then, I’ve made it my mission to help other patients with HCM or other chronic illnesses to find resources, get educated about their disease, and achieve some level of acceptance, even when it’s scary.

To that end, I became one of the original HCMA Online Discussion Group Leaders in December 2020 and have been moderating the monthly “Life with HCM” group ever since. This group has afforded me the opportunity to connect with hundreds of fellow HCM patients around the world. And as helpful as I hope I have been to them and they have been to each other, each participant has helped me as I move forward in my HCM journey as well.

In 2025, I completed the Media and Medicine Certificate Program through Harvard Medical School and learned “How to tell stories that make a difference.” I subsequently started a newsletter, “What’s Her Problem?,” in which I tackle Issues at the Heart of Chronic Illness and Disability through personal essays, interviews, opinion pieces, and more. In other words, I’m telling my stories of HCM and other medical challenges I’ve faced in order to help others who may be experiencing something similar.

I am an HCMA Ambassador, and you can find me at:

Substack: Subscribe to “What’s Her Problem?” at whatsherproblem.substack.com
Instagram: whatsherproblemstack
Website: debrarafson.com (where you can contact me for writing, speaking, and podcasting opportunities)