We've partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases will share their unique stories; the latest comes from Catasauqua, Penn. resident Annette Pompa.
In 2010, I was a 40-year-old active mom of two, and an art teacher/artist who loved to run and lead a healthy lifestyle. That year, the Beast rudely cut in.
The "Beast" is a not-so-affectionate name many of us with coronary microvascular dysfunction give to MVD. In MVD, it is thought, the microvasculature lacks enough nitric oxide and constricts. It doesn't adequately feed the heart muscle, causing angina and other symptoms.
For me, my new life with MVD began after a run, when I felt extreme fatigue. Three days later, the fatigue, pain, heaviness in my chest and shortness of breath were overwhelming. I couldn't even read to my kids. This began blood tests and visits to the ER, my GP and specialty doctors. I had stellar blood work. Symptoms kept pointing back to my heart. Except for a little ischemia on a nuclear stress test, I should be healthy. My first cardiologist dismissed it!
It was frustrating to be labeled not a cardiac patient when I presented like one. I was told, "You'll be fine! Exercise!" Really? I was debilitated with angina, shortness of breath and fatigue. I could not walk, let alone run, without consequences. I had to quit teaching. I was sleeping or managing too much angina. If my life were a dance, the music nearly stopped!
Months dragged by. I researched and found similar stories of women who had been misdiagnosed - some for years. Unfortunately, at times, women are compared to male cardiac patients. It turns out MVD is often invisible in typical cardiac testing. I found a cardiologist involved in the Women and Ischemia Syndrome Evaluation (WISE) study, and it was confirmed. I was diagnosed five months after this began. No cure, but he offered hope in managing the symptoms! He was in my corner until I found a local cardiologist who would work with me.
The tempo of my life changed. Treatment began. I had an increase in energy but pain persisted. I need nitroglycerin for daily angina. Nitrates help constricted micro vessels dilate. I began long-lasting nitrates and use sublingual nitro at will for break through pain. Life began getting better. "Better" was not returning to work. But I no longer slept all day, and had some relief from angina.
The Beast still cuts in. So much is not understood. But now I feel more control. My song is slower, but it's better than the wallflower the Beast had reduced me to!
We need more research into MVD. Each patient varies in severity. No one knows why. Some have daily bouts of it, others weekly or monthly. It is serious and often debilitating. There are doctors who believe this is clear-cut and we are all just dealing with a nuisance. Physicians need to understand MVD better and quickly treat our angina symptoms even as they do tests.
Patients also need to be their own best advocate. We must act on these symptoms regardless of diagnostics that have difficulty showing MVD. Patients need to be helped in a timely manner to limit the potential heart cell damage and increase our quality of life - our song.
Annette Pompa blogs on microvascular dysfunction and posts medical info on the Coronary Microvascular Disease page on Facebook.
