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Evelyn Keltgen - phaware® interview 374

Jul 5, 2022

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 out when I'm exercising. So for PE, I’d have to wear knee braces when I was doing PE so that my kneecaps didn't dislocate. There's that as well. It also affects hips and lungs, which adds to the pulmonary hypertension. Because my pulmonary hypertension is pretty stable, but the other stuff on top of it just makes it worse.

I do volleyball for the school and since volleyball doesn't involve running back and forth on the court like basketball or soccer or something like that would, I'm able to do that one. So I do volleyball and then I also do horseback riding. I take lessons at a barn near my house. I do the pep band, the concert band, and jazz band. I play the alto and tenor saxophone. I can do a teeny bit of clarinet, but I don't do that for school, just for fun. I also do student council. I do FFA, which is Future Farmers of America. For FFA, this past year I did horse evaluation. So me and a team, we went and evaluated the horses' conformation and stuff like that. Also another thing of activities I'm in, I do Knowledgeable Bowl. We go around and compete with that.

I've always wanted to be a veterinarian. I feel like I've always kind of had that figured out. So I'm just doing agricultural classes and fun stuff that relates to that, so that hopefully there is a good school [I can get into] and I can become a veterinarian.

People at school, like my classmates, they know I have something, but I've never sat them all down and explained it to them. So they just don't exactly know. But that's okay, because it'd be a lot of people to try to explain it to if I explained it to everyone. So I let them know that I have pulmonary hypertension and they maybe don't know what that is, but at least they know I have something. Then that way, if I'm sitting out in gym, they're not like, "Come on, keep running," or something. I always tell my friends. They know, so they can try to understand it. So when we're doing something and I like, "Oh, I need to take a break," then they understand and know why.

I'm pretty sure I've met other kids from Minnesota, or at least their parents, at the hospital or something when we went up for a visit once. But I was pretty young and I don't really remember it. So the first real time that I got to talk with actual other kids that have pulmonary hypertension was at the PHA conference this year. It was nice. It was fun to meet people that can relate to the problems you have.

I try my best to fit in. For volleyball, I have to wear my knee braces and stuff so my kneecaps don't dislocate. It makes my knee pads look really big. So sometimes it's a little embarrassing, but I know if I don't do that, then my kneecaps are going to get worse and then it's just not going to be good. But most of my stuff for my PH, no one else really sees because it's just me taking my meds during morning and night. So the only thing that they would see is if I needed an inhaler puff or two while I was exercising or something.

Some advice for a young kid that might be facing stuff like this is to just be yourself and find stuff that you enjoy doing, because you can like other things and have yourself defined as liking other things and not just having a disease because you're limited to some things. But there's lots of other things that you can still do and be really good at. I just focus on what I can do because I can do a lot of things compared to a lot of other people. So I'm very fortunate that way. But it's the things that I can do that I do, which means I like doing them. So the things that I can't do, like basketball, for example, I don't particularly like basketball. I know a lot of people do and that's fine, but I feel like the things that I've been doing and I do, I enjoy them. So that's more of a glass half full kind of thing.

Support from my family and my friends and everyone else around me is really important. When I'm sick, I need lots of care. I'm on oxygen. Like I need Tylenol and ibuprofen around the clock, along with nebulizer treatments. So my mom and my dad, they're usually doing that and they help me when I'm sick and that's really important, because if someone didn't have that, they probably wouldn't do very well.

My name is Evelyn Keltgen and I am aware that I am rare.

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