Feb 14, 2023
Pulmonary hypertension patient, Lindsay Thurman, shares her
experience of long distance running while living with a chronic
lung disease.
Follow Lindsay's Running with PAH blog
page on facebook.
My name's Lindsay Thurman. I have been living with PAH since 2008.
When I was first diagnosed, I was having a lot of trouble
breathing. I almost passed out a couple of times. I actually ended
up getting a diagnosis and then being told that I was fine because
of a mix-up at my doctor's office and went without treatment for
about three years, which of course made my disease progress a lot
so that I actually did start passing out. I went back and they
basically were like, "Oops, sorry." Then I got started me on
treatment. From 2012 to about 2020, there was just this flow with
things where I would get sicker and then go back to the doctor.
We'd usually add another treatment because our goal's been trying
to keep oral treatments as long as possible. I would respond to it
for a while and then slowly the pressure in my lungs would creep
back up and we'd add another oral medication until we were up to
three.
In February of 2020, things had gotten really bad, probably the
worst they've been for me, definitely, since my diagnosis or since
I started treatment. I knew my disease was getting worse because I
went into arrhythmia during my six-minute walk test, which I
usually would do very good on. I always walked pretty fast on
those. They freaked out and sent me to the hospital. I was
convinced that they sent me there because they were going to start
me on IV meds, which I later found out was one of the reasons why
they sent me, they were worried they would have to start me on IV
meds. But thankfully the right heart catherterization was showing
that the pressures were in the fifties as opposed to the nineties,
which is what my echo was showing. Because of that, my doctor felt
comfortable swapping out one of the medications I was on for
another one in the same pathway.
Originally I had started on Adcirca and then years later added
Opsumit and then I added Uptravi. At this point we were swapping
out at Adcirca for Adempas. I didn't have very high hopes. In my
experience, my treatments would work for a little while and then
everything would get worse again. At the time it felt like the
beginning of the end. It definitely felt like I was on the verge of
needing IV meds. But I started taking Adempas and it was very
strange for me. The first night I took it, I went out to dinner
with a friend and I remember saying that it felt really strange
because it felt like there was too much room in my lungs, which
sounds weird, probably to a normal person, but it was like, "Oh, I
don't have to try to breathe, it's just happening." I could breathe
in deeper if I wanted to. I didn't really like it because I wasn't
used to it. It totally freaked me out. Then I got used to it and it
was great.
Ever since my diagnosis, I had always done my best to be as in
shape as I could, given the constraints because I could never run.
So what I would do is I would walk and I would walk five to 10
miles several times a week in a local park here in Kentucky that
has pretty big hills. I wouldn't always go very fast and there were
a lot of times when I would have to stop and catch my breath, but I
would try and make goals for myself as far as how far I would go or
trying to walk faster, things like that. Then I always did yoga and
stuff.
After starting Adempas, it was spring time, in April. I was getting
back to walking. I was really excited because before in 2020 I was
having a really hard time with hills and now all of a sudden I
realized that I wasn't even getting slightly out of breath on
hills, which never happened, even with all the years of walking on
these hills. I was at the park with my dogs and I had just got this
inkling in my head, what if I could run? I wondered because I've
been breathing so well and since I started Adempas, I hadn't had
any sort of symptoms. This was during the pandemic, I teach high
school, so thankfully I was able to work from home and my days
weren't too bad because I would do video calls and then have the
kids do assignments. I had a lot of ability to get outside pretty
regularly.
When I got home from the park, I decided I was going to try to run
just around the block, but at the end of the street there was a
group of people and they were just standing there talking. I had
tried to run in the past and every time I did, I just couldn't do
it. I would take two steps, my lungs would just basically shut it
down. I would not barely be able to breathe, so I had to stop. I
didn't want to embarrass myself by running two steps and then
having to stop in front of a crowd. I just walked past them and
once I was past them, I was like, "Okay, I'm going to do this." I
started jogging very slowly, but it was weird because I didn't have
to stop.
It took me a while to even figure out what was going on because I
was concentrating so hard on breathing and listening to my body
because I didn't want to do anything that would hurt me or put me
in a position where I might pass out or something. I was so
intently focused on my breathing that after a while I realized I
was all the way down at the end of the block and turning. I live at
the end of a cul-de-sac, so I was going around the cul-de-sac. I
just remember thinking, "Wait, am I breathing? Is this normal
breathing?" It was and I made it all the way back to my house,
which ended up being half a mile and I just about freaked out. I
started calling everybody that I knew to be like, "You're never
going to guess what happened."
All of them were very cautiously optimistic and said, "That's
great, but don't go crazy. Don't push yourself." But all I wanted
to do was do it again. From there, I made myself wait till the next
day to try again. Then the next day I was like, "I'm going to do a
mile." Instead of stopping, I ended up doing two and a half miles
or something. Very shortly after that, that was up to a 5K and then
five miles, six miles, eight miles, I just kept building distance
on. I had this goal that I wanted to do the Triple Crown, which is
a series of races in Louisville where they do a 5K, a 10K and a
15K. I was like, "Man, if I could do a 15K, that would be amazing."
I went out for a run at this one park that spans pretty much across
the entire city so you can go as far as you want and come back.
I ended up doing 11 miles. I thought to myself, "That's pretty
close to a half-marathon." It didn't even really feel that
difficult because I always kept my pace pretty slow. I let my lungs
guide how fast I was running. I never pushed myself for speed. I
think because of all of the walking I'd been doing for over a
decade, really helped me be able to just build on distance once I
started running because my body was used to long, continuous
movement. I'd called my doctor about the running and he said that
he thought it was great as long as I felt good the entire time.
Before my appointment, I weirdly got the idea that if I could do a
half-marathon, maybe I could do a full marathon, but I wanted my
doctor to sign off on that.
So I went back to the park. I did 16.2 miles, and then I was within
10 of a marathon. This is just a few months later. I went to my
doctor and showed him my run on my tracking app on my phone and was
like, "What do you think about me doing a marathon?" The nurse
practitioner in his office was all about it, she was like, "Oh,
that's awesome." He said, "I think it would be better to stick to
shorter distances." Which wasn't technically a no, it wasn't a yes,
but it wasn't a no. I just decided that I knew my body, I could
tell if I was doing something dangerous, so I was going to try to
train for a marathon and see what happened and maybe just tell him
about it afterwards.
You should always get your doctor's approval for things, but he was
encouraging me to run, he just didn't think a marathon was a great
idea. I did compete in the Triple Crown, which was fun, but at that
point I'd run so much further than a 15K, it didn't really seem
that exciting. Then I did the mini-marathon, which is a
half-marathon here that's part of the Kentucky Derby Festival. That
was something I had dreamed about doing since I was a kid because
my mom used to run it. I always thought it was so cool. There's
people cheering you along the entire way. It just looked so fun to
me when I was little, but that became an impossible dream when I
got diagnosed with PAH. That was a really cool moment to get to do
that, to live that out. The mini-marathon was almost exactly one
year after my first run and then the marathon was the following
November, so November of 2021.
There was all sorts of drama, I injured my heel just from running
so much and bugged my rheumatologist incessantly by trying to get
him to give me something to make it stop hurting, even though he
was continuously telling me that the only thing that would help it
was rest and ice. I didn't want to rest, which made training more
difficult. I even learned about something called aqua jogging where
you put on a flotation belt and you are upright in the deep end of
a pool with just your head above water and you pretend run
underwater and you move really slow because you're not swimming,
you're running. But it's a way to mimic running without putting any
stress on your joints. I would do it for hours at a time, which
would be embarrassing because there would be kids doing swim
practice and they'd look at this head floating down the pool back
and forth, just moving super slow. So that was strange.
The day of the marathon finally came and I was very nervous, I had
a goal of five and a half hours because I could do a half-marathon
in two and a half hour, so I was like, "I'll give myself an extra
half hour to walk some." It started off super great. I was having a
great time. People always talk about a wall and I'd never
experienced that even though I'd done a 20-mile run and I'd done a
22-mile run. When I was in the marathon, I got to about mile 18 and
I paused to walk to eat a granola bar. I started thinking, "Okay,
how many more miles do I have left?" And I was like, "Oh wow, I
have eight miles left."
Then I started thinking about how long it took me to run eight
miles. All of a sudden I was like, "Oh man, that's a long time. I
want to be done, I don't want to do this anymore." At that point it
became very difficult to will myself to run, I would take a lot of
walking breaks. I had set myself up with plenty of time to spare to
hit my goal of five and a half hours. By the end, there was a lot
of walk, jog, walk, jog. I kept trying to tell myself in my brain
that if it's 5:35, that's not that big of a deal, that's close
enough. But I am also incredibly stubborn and I knew that I was
going to be very angry at myself if I didn't hit that goal because
I knew I was capable of it. Thankfully I finished in 5:27 because
if I hadn't, I might have done something crazy like sign up for
another one.
Once you crossed the finish line, all of the pain and all of the
stress just completely melts away. It was such a cool moment
because it really felt like I had just done the impossible. Running
was supposed to be impossible period and being able to do a
marathon was just totally impossible. It was really cool, thinking
back, it was 19 months from being in the hospital bed in February,
thinking, "Oh well, this is the downhill part of my life. It's just
going to keep getting progressively worse until I die." Then 19
months later, I ran a full marathon. Just reflecting on that was
just insane. Definitely one of the best days of my life, not so
much the end part, those last eight miles, that part was not great,
but the part after the finish line, that part was wonderful.
Obviously I celebrated with my family and had a great time. Since
then I've continued running.
What I find really interesting with something like PAH, with it
being so rare, I've been very excited about the advancements
they've made in treatment options. I looked it up one time, the
three medications I'm on right now, which are Opsumit, Uptravi and
Adempas, none of those existed when I was first diagnosed. I think
Opsumit might have been in the study phase because I entered it at
the very end of that study in 2010. But Uptravi, I don't think got
approved till like 2012. Adempas is, I think, still considered
relatively new. So it's just crazy to me to see even just how much
progress has been made in the amount of time since I've had it.
Which gives me hope because if these medications become less
effective, I know that there's still options out there that could
hopefully keep me... I mean, I want to stay where I am now because
it's really cool to not have any symptoms, especially having had
horrible symptoms for years.
There's a learning curve when it comes to figuring out how to
exercise safely because the most important thing is to not
exacerbate your pulmonary hypertension. It sounds cliche, but it's
all about listening to your body. The way I think of it really is,
I always let my lungs guide me. It's not that you can't get out of
breath, it's that there's a safe version of out of breath and
there's a non-safe version of out of breath. You have to be able to
distinguish between the two. For me, it feels like a pressure in my
chest, if it's the bad kind. If I get out of breath and can feel
pressure building in my lungs or in my heart or wherever it's
happening, that's when I immediately stop.
Generally, I'll close my eyes and try and calm my breathing and
calm my heart rate as best I can. The times when I pass out is when
I'm unsuccessful in that endeavor. So it's important to recognize
what good out of breath feels like. It's so hard to explain without
someone being able to feel what I feel when it's happening, but
it's almost like my body has alarm bells. When I'm out of breath
and it's safe, I never get super out of breath, it's just maybe I'm
breathing a little bit harder and there's no tension, there's no
pressure. It's just I happen to be breathing a little bit quicker.
It's also incredibly important to slowly build on things. When I
ran, I was building my distance relatively quickly, but that was
because I was familiar with long distances and walking. I had had a
lot of experience listening to my body, so everything I was doing
felt completely safe the entire time. But you can't just go from
zero to five miles all of a sudden.
It's hard because there's nothing you can do as far as working out
to improve your ability to breathe, which a lot of people who don't
have pulmonary hypertension don't understand. When I've talked to
other people, normal people, who work out, they always talk about
how important it is to push yourself cardiovascularly and that's
how you get better and that's how you get stronger. For me, it has
to be completely the opposite. If I push myself cardiovascularly, I
run the risk of going into arrhythmia, passing out or even possibly
dying from right heart failure. The way you can push yourself
really is more to increase distance on a walk or doing things that
aren't really considered cardiovascular. For me, it's yoga.
I don't do much weightlifting, so I don't know what that's like,
but maybe weight lifting or some kind of anaerobic exercise.
Because I have a lot of experience with yoga, I recommend it so
much to just anybody because it's so good for blood flow or all
your circulation. It helps with breathing, it helps with meditation
techniques, which can just be good when you are dealing with living
with pulmonary hypertension because it's a stressful disease.
Nobody likes specialty pharmacies or you're having to call them
every month. Nobody likes having to set a million reminders in your
phone for medications and all that stuff. It's just everything
about it is frustrating.
So for me, yoga's always been really great, but the best thing
about it is that you can start from anywhere. Every single pose can
be modified. Once you get really good at certain things, you can
start doing more challenging poses. There's always room to grow and
you can start literally anywhere. So I definitely recommend that. I
also would definitely recommend walking just because that kept me
so healthy for so long, in spite of being sick. I used to call
myself a healthy sick person, now I feel more like just a healthy
person thanks to my medication, but being a healthy sick person is
definitely a good goal to have.
My name is Lindsay Thurman and I'm aware that I'm rare.
Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials.
Follow us on social @phaware Engage for a cure: www.phaware.global/donate
#phaware Share your story: info@phaware.com