I’m Aware That I’m Rare: Joellen Brown (231)

The phaware® interview

Pulmonary hypertension patient Joellen Brown discusses being born with a hole in her heart in 1956 that developed into a PH diagnosis in 2009 and the importance of support groups and PH research.

My name is Joellen Brown, and I am a pulmonary hypertension patient.

I am from Columbus, Ohio. I was diagnosed with PH 2009, but that’s not where my journey started. I was born with a hole in my heart, back in 1956. So not a lot of treatment, not a lot of surgeries that went well. I was one of the lucky ones. They were able to do open heart surgery, put a patch on it. So I went through my life not being able to take gym or doing a lot of stuff like that. I was told not to have any kids, to really watch myself.

Well, I ended up with three daughters, no problems. Relatively good health, until I was 40. They found out that I had a tear in my aortic valve, so I had a second open heart surgery. For 40 years, I was not on any medication. When I hit 40 is when I started that. Then my health went in peaks, off and on, until…