I’m Aware That I’m Rare: Kaitlyn Thompson (378)

The phaware® interview

Pulmonary hypertension patient, Kaitlyn Thompson describes coming to terms with the difficult reality of not being able to carry a pregnancy due to her PH, as well as detailing an emotional recent near death experience.

My name is Kaitlyn Thompson. I’m from Maryland. I was diagnosed with pulmonary hypertension when I was nine. Before that, I had had heart problems. I’ve had two open heart surgeries. I had one when I was three and one when I was six. My pulmonary hypertension diagnosis is actually because of my heart problems that I had when I was really little.

I remember the moment that we sat down in the doctor’s office and he told my mom what was going on and that I’d needed to have surgery. My mom was only 21 at the time. She had me really young, so she was 21 going through me having to have open heart surgery. So the one when I was three, I don’t really remember. But when I was six, I remember what was happening. I don’t really remember going into surgery, but I remember after I just wanted my mom. I don’t really remember being in much pain or anything. It was pretty smooth from what I remember.

Still, after the surgeries, I was still really out of breath. I would get short of breath doing pretty much anything. I couldn’t participate in gym classes in school. Originally we had thought that was because of my heart problem, but once that was fixed surgically and I was still having the symptoms, they figured they needed to work further in figuring out what the actual problem was.

I first got diagnosed with asthma and smaller things like that until I went back to the original hospital and they did an echocardiogram. They told my mom basically the diagnosis and I was too young to fully understand at the time. They told her I had pulmonary hypertension and I would have it for the rest of my life. I remember she was pretty upset about it, just hearing all that it was, and I was only nine.