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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 & Thursday!

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Lindsay Thurman - phaware® interview 311

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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