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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