I’m Aware That I’m Rare: Evelyn Keltgen (374)
The phaware® interview
Pediatric pulmonary hypertension patient, Evelyn Keltgen, discusses being diagnosed with PH at 6 weeks old. At age 9, Evelyn learned that her PH was connected to TBX4 gene mutation. She enjoy horseback riding, volleyball, and playing the saxophone. Evelyn is working towards becoming a veterinarian after high school.
Evelyn Keltgen:
My name is Evelyn Keltgen. I live in Minnesota and I was born with pulmonary hypertension. I was diagnosed at six weeks old. I’ve had it my whole life, so I just deal with it. I always had it, so I’ve never known any different. I wasn’t allowed to go to preschool because of germ exposure. I started school in kindergarten instead. So, every day I’d go down to the nurse, get my temperature checked, because at that time, I’d get really flushed during the day. I’ve never come to a big realization, because I’ve just always known. I had a 504 plan so that I could limit myself doing PE, because that’s when it really affected me. Sitting in class, I’m fine, unless there’s bad air quality that day. I’ve always had to limit myself, so I couldn’t run around and do laps with my friends sometimes, or I’d have to sit out. But I try not to sit out because it’s not as fun.
But evidently, I was getting a little worse on my CT scans and stuff, so my pulmonologist, Dr. Besch, my parents were talking with him. I’m pretty sure that he said that we should just wait and see how the CT scans keep going. But my mom and dad were like, “No, we should try something, not very invasive, but that could work.” So I was put on azithromycin three days a week, and the side effect of it is to lessen inflammation in my lungs. So now, I’m just on that three times a week, and it helped a lot.
They must have done genetic testing. I came back for the TBX4 gene. My parents got tested and I got it from my mom. A bunch of people in my family have gotten tested, to see who has it and who doesn’t. You can kind of tell, because it affects the lower limbs too. My kneecaps will pop…
