Preview Mode Links will not work in preview mode

I'm Aware That I'm Rare: the phaware® podcast

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday!

Use the search bar above to search episodes by topic. Search "phawareMD" to discover podcasts with medical professionals.

Get our custom smartphone app (for iPhone™, Android™, and Amazon™ devices). It's the most convenient way to access the phaware™ podcast.

The views and opinions expressed in the phaware® podcast do not necessarily reflect the official policy or position of phaware global association. Information on and phaware social media sites is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

2023 sponsorship support was made possible from: CVS Specialty, Enzyvant, Johnson & Johnson, Liquidia Technologies, Inc., Gossamer Bio and Merck & Co, Inc.

To learn more about PH visit phaware® is a 501(c)3 organization. © Copyright 2023. All Rights Reserved.

Lindsay Thurman - phaware® interview 403

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 Follow us on social @phaware Engage for a cure: 
#phaware Share your story: