Feb 28, 2020
Lindsay Thurman is an idiopathic pulmonary arterial hypertension patient diagnosed in 2008. Lindsay teaches math full time at a high school in Louisville, KY. She is on triple oral therapy as well as a study medication in #clinicaltrial.
My name is Lindsay Thurman and I am in Louisville, Kentucky. I
was diagnosed with idiopathic pulmonary arterial hypertension in
2008.
The first time that I noticed any symptoms, I was actually living
in Oklahoma. I walked up a flight of stairs to my second floor
apartment and it was just a very strange feeling. I was really out
of breath and it kind of felt like when you get a side ache from
running but everywhere. My whole body just ached and it really
freaked me out. It was really weird. I didn't really know what was
going on, but I know that I had trouble breathing and so I, for
whatever reason thought, "Oh well maybe I'm out of shape." So, I
started working out. I got a bike and rode my bike everywhere. It
just kept getting worse and worse, which seems counterintuitive. I
thought if I worked out I should be getting better.
I ended up moving to Texas and I needed to get a new doctor. When I
was there, I wasn't used to going to the doctor all the time, I
just kind of mentioned what was going on and they ordered an echo
to be done. Then, they said that they suspected pulmonary
hypertension, which I'd never heard of. Then, that whole year, they
did test, after test, after test. Finally, [my doctor] did a right
heart catheter where he confirmed that it was pulmonary
hypertension. My pressures were about 60 or 65. They said there was
no cause or anything. Back then they called it primary pulmonary
hypertension.
Once they found out that I had pulmonary hypertension... I lived in
Abilene, Texas. I was married at the time and my ex-husband was in
the Air Force, so we were in Abilene, Texas, which is a pretty
small town. They didn't have any specialists or anything. The
closest big city was Dallas. So, they sent me to a specialist in
Dallas. I went down there. I spent the whole day there. They wanted
all their own testing. They wanted to do their own echo, even
though I had just had one at my doctor in Abilene. I remember the
echo was last minute and we kind of ran out of time and they said,
"Well we'll just do it really quick and then you just go home and
we'll call you with the results."
This was in November, when I went there. So, I'm waiting and I
never heard anything. At this point, I wasn't used to doctors
really. Nowadays, I go to the doctor all the time, so I would know
that if I didn't hear back, I would call them and ask why. But a
couple months went by and it wasn't until February that I finally
called and asked, "What am I supposed to do now?" The lady who
answered, she asked who I was, and I said, "I was wondering about
my test results." She said, "Oh, they came back normal." Which was
very confusing, so I was like, "Okay." So, I asked her, "What
should I do now?" She said, "Well, just go live your life because
you're fine." So, I was very confused, but I just assumed that she
was right. So, I was like, "Okay, cool. I guess I don't have
it."
At that point, my symptoms had improved. So I was like, "Well maybe
it just got better on itself,” because I didn't really know much
about the disease at the time. Another two years went by. In the
winter of 2010, I started passing out when I would work out or even
just some small things. One time, I walked to the car and ended up
passing out on the sidewalk. So I went back to the doctor, at first
they did a stress test on my heart, which was very strange. Then
they ended up doing another echo. [The doctor] was like, "Oh, it
looks like you have pulmonary hypertension." They did another right
heart catheterization and at that point my pressure had gotten up
to 90.
So, they sent me back to the specialist. When I got there, I
remember the doctor kind of said something like, "Oh yeah, I
remember we saw you a couple of years ago and then you just never
came back." I didn't say anything because I was young and confused.
That was when I actually got started on treatment was the second
time I went to see the specialist.
The next time they checked my pressures, they had got down to
around 30 or something. Then, I moved back home to Louisville. I
started seeing my current specialist who I think is just super
amazing. My pressures had started to climb back up. It's just kind
of been, we're good for a while, then my pressures will start to
increase, so we'll add another medication. Then, it'll go back down
and then eventually after a couple years they might start to go
back up. So, now it's just kind of playing the game of trying to
keep things as low as possible.
My symptoms have been pretty well managed, at this point I know a
lot more. I know how to take care of myself and I kind of know what
my own personal limits as far as, what I can do, when I have to
take my time, if I need to take a day off work to make sure I don't
overextend myself. It definitely is scary, especially when you're
young and somebody tells you that your life is not going to be at
all what you thought it was going to be. They told me I'm never
supposed to have children. My first doctor actually told me that
I'd probably be dead by 31, but I'm now 34 and doing just fine.
It's very scary having no idea what your life is going to look
like, because most people have at least some kind of idea what they
want their life to look like. My advice would just to be, take it
one day at a time, because even though it's different, it can still
be a really great life. Just because you might have some physical
limitations doesn't mean that there aren't other things that you
can still enjoy. I'd definitely recommend allowing yourself to be
upset sometimes. It is unfair and it is hard to see people live
completely normal lives and not have all the problems that you
have. It's okay to feel bad for yourself every once in a while, but
it's important to just kind of take your moment, be upset about it,
and then be like, "Okay, I'm not going to let this ruin my whole
day." Then move on with your life, because it's important to enjoy
everything that you can, because you only get one life might as
well do the best you can with whatever you have.
I know one of the things with women, especially the childbirth
thing is really hard, because especially when you get diagnosed
when you’re young and you don't have kids. It's very difficult to
realize, "Oh, I'm never going to get to have kids." But I will say,
I used to want to have kids, I have since kind of accepted that
that's not going to be a part of my life. I'm personally not
interested in adoption, mainly because just knowing my physical
limitations, I'd rather not do it, than do it poorly. But, I now
have three nieces and I teach high school math, so I kind of get
some fulfillment in that area with being an aunt and with teaching.
So, there are other ways that you can fulfill that maternal drive
that you may have felt or possibly still do feel. Some people do do
adoption, which is totally great, but you can still find
fulfillment other ways.
I'm Lindsay Thurman, and I'm aware that I'm rare.
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