I’m Aware That I’m Rare: Joann Volpe (266)

The phaware® interview

Long-term pulmonary hypertension patient, Joann Volpe discusses her road to diagnosis 25 years ago, being put on a clinical trial for the first PH drug, and her believe in a higher power.

I’m Joann Volpe, and I’m a pulmonary hypertension patient.

I was diagnosed 24 years ago. I was having shortness of breath just walking from my car to where I worked at a high school. I went to all kinds of doctors and nobody knew [what was wrong]. They thought it was a hole in my heart. This one pulmonary doctor I went to in the next town over said, “You have four years to live. Go home, get your affairs in order.”

So, I got home and my daughter said, “we’re going for a second opinion.” So, we went to the capital, Hartford, and we went to Hartford Hospital to a doctor there. He definitely confirmed that I had pulmonary hypertension. From then on I really went downhill. I was passing out in the shower. [I was] real sick in the hospital, in and out, in and out. At one point, I was in a coma for five days. They said they thought…