A real patient story

I consider myself one of the lucky ones.

I was a runner, triathlete, skier, scuba diver, etc. before my problems got severe enough to seek medical help.

Most doctors took my health decline seriously from the start.

Later, it was not uncommon for doctors who were unaware of my athletic endeavours to assume my subsequent lack of fitness was the cause of my condition rather than the result.

I’d completed Ironman Canada and several shorter races throughout 2014, though with a lot of trouble and pain.

In 2015, I moved to Denver and the altitude immediately worsened my condition. By spring, I could only run 3 miles. By summer, I couldn’t run at all. Weight gain was constant throughout this period. Doctors identified a severe congenital heart defect I’d lived with for 48 years unbeknownst to me. My condition continued to worsen after the first open heart surgery. It would be another year before anyone looked for coronary artery spasms.

Information was lacking about Prinzmetal Angina. A lot of what we did was trial and error. We had to determine triggers, medications, treatment at home, effective communication with the local ER when attacks got out of hand, mitigating side effects from the medications and more.

I discovered a small Facebook support group and we started sharing our experiences. That group has since exploded in size and we are able to provide assistance to those trying to figure out how to live with this disease.

My hope is that we can continue to expand our reach, providing resources for patients, providers, researchers and family to improve diagnosis, treatment and understanding.

Don, aged 53

  United States of America

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