I’m Aware That I’m Rare: Steve Smith (437)

phaware global association®
12 min readOct 23, 2023

the phaware® interview

In this episode, pulmonary hypertension patient, Steve Smith discusses the importance of a good support team and how he tackled anxiety and his passion for musical theater.

My name is Steve Smith. I’m from Sterling, Colorado, a really small, rural community in the northeast corner of the state. I was diagnosed with PAH, (pulmonary arterial hypertension), in 2018. The process of the diagnosis took a long time. I think I was really frustrated and searching for answers as much as five years earlier. I would tell my doctor, “Something is not right,” test after test after test. Finally, I got referred to a cardiologist. Long story short, they found a hole in my heart that had probably been there since childhood, or even birth. We don’t know. It really, really explained a lot about the things that happened to me over the course of my life that I was never really sure about. By finding that hole, they discovered that my right heart chamber was considerably larger than the left, and it had just pumped very, very strenuously through most of my life. As a result, it was weakening.

They determined that the lungs had really done a number as well. That was a life-changing time. To understand, “Wow, this is what’s been wrong with me for not just five, not just 10 years, but markedly, through most of my life. Granted, when I was younger, it was not as much of a problem. I did experience shortness of breath quite a bit. I was a cop. I was in law enforcement for 13 or 14 years, just outside of Tampa, Florida, in Hillsborough County. We had physicals, and I was able to run and do the physical things that were required, but sometimes they would fail me because they said my heart rate was too rapid. I said, “Well, I feel fine.” “Well, your heart rate shouldn’t be that rapid, running a mile.” It was, and I never really understood why I had such a rapid heart rate.

Again, 2018, the lights came on, and it was all very, very clear. I’ve been going through treatment with various medications since 2018, some with success, some not so successful, and adjusting things. Right now, with regard to this condition, I think I’m managing it very well. I’m at a very, very good place with the disease. Some of the side effects of the medications bother me. Congestion is a huge one. It bothers me immensely, but I’m able to continue to work. I’m a college administrator at a community college here in Sterling. This is my 24th year in this position. I look to retire probably in a year and a half or so. So I’m glad I was able to continue to work as much as I wanted to, and to get involved in activities as much as I’m able to.

We moved to Colorado in 1997. We live in the plains. So the plains are not nearly the altitude that the mountains are, but we are two hours away from the mountains. We love going to the mountains. We absolutely do. I struggled in the mountains. There was a really vivid memory in my mind when I first felt like something was seriously, seriously wrong. I was with a group of men, a group of friends from my church. We were snowshoeing together up in Rocky Mountain National Park, in the winter. So we’re high, it’s cold. We’re basically marching, because I’ve never been in snowshoes before. I felt like something was terribly wrong. I took my coat off, and I had to breathe really, really deeply. I got very, very afraid, because all those elements gave this condition a real workout that I was not expecting.

Walking, on a normal day in the community that I live in, where it’s flat, I wasn’t experiencing those things. At that point, I just attributed it to altitude. But I knew something was wrong. When I went to my doctor at the time, we talked and he did some heart tests, simple things. He said, “There’s no indication that there’s anything wrong with your heart.” But he hadn’t done those in-depth tests that a cardiologist did, to discover exactly what was wrong. He was looking at my vitals. My oxygen was good. My heart rate at that time, during the test, was normal. It was a regular beat. They weren’t finding anything. But yeah, it was that trip up into the mountains that made me realize, “I’ve got to get to the bottom of what’s wrong.”

It was a relief to have a diagnosis that was solid, and certain, a whole lot better than people saying, “Well, we can’t find anything wrong.” Or, “Maybe it’s just anxiety.” There was one time I was treated for what was believed to be asthma. “Well, maybe you just have asthma. You’re struggling with breathing.” So I used an asthma inhaler, not knowing I didn’t need one, and it didn’t really help. So I went through a lot of those things, where it was trial and error. In 2018, it was absolutely a relief to be told by my cardiologist, “You have PAH.” And I said, “What is that?” And he said, “Pulmonary arterial hypertension.” Again, “What is that?” He was sure of what it was. I was clueless.

What do we do? We go home and we Google. I thought, “Oh my gosh, what in the world is this?” Then I read about the medical treatments, and ultimately the fact that there’s no cure, it’s managed. So yeah, I got a little scared. My wife and I talked. I said, “I have a really good support system. I have a really good medical team. I’m just going to take this journey. If they try medication on me, and it doesn’t work, I’m going to tell them, ‘This isn’t working. This is making it worse,’ and we’re just going to do it a day at a time.”

I had a really, really good mindset. My attitude was really positive. I was still doing a lot. What happened with me, every time I ran or went up an incline, or like I said, hiked in the mountains, maybe was working out in the gym, I’d feel the heart beating really fast. My heartbeat and my breathing would get out of sync with each other. It really, really scared me. That’s the condition that I kept experiencing. So when they gave me a diagnosis, I thought, “Well, good, it can be treated.” I didn’t panic as much, and have the fear factor hit me, when I did experience those things. I learned, “You’re going to have to pull back. You can’t run anymore.”

I’m six feet, five inches tall. I don’t take stairs one step at a time, I take them two at a time. Guess what? I need to slow down on the stairs. I need to take them one at a time. And if I get to that landing on the stairs that turns, and I have to catch my breath, I can do that. So by understanding what was happening with my body, and knowing what it was… I mean, I used to always fear I was having a heart attack, or I was just on the cusp of having a heart attack. Now, I don’t feel like that’s what’s happening if I experience those sensations. But I also know what to do to prevent them. If I’m really having a bad day, I can take the elevator. But most of the time I want to say, “No, I want to take the stairs as long as I can.”

I’ve always been interested in musical theater, whether it was modern musicals or old musicals from the ’60s. I just really enjoyed musical theater. I think it started, seeing musicals on the big screen with my parents, growing up. My wife is a musician and she loves musicals. In our early years of marriage we’d go to some Broadway musicals together. We both really had a liking for musical theater. Never did I imagine myself to be a part of musical theater. I wasn’t in musical theater at all in high school. It didn’t really surface and show itself to me in my life until my adult years.

Many, many, many, many years ago, there was a local theater group, a community-based theater group in my area. It’s pretty much run as a nonprofit. One of the first productions was Grease. Grease was one of my favorite musicals, productions, soundtracks, if you will, going back to high school with the musical on the screen. I auditioned for a specific role, the Teen Angel. He had one song that he sang, and that was it. I got that role. It was just a very small. I’m on stage. I sing, I’m off. So I didn’t have lots of experience with acting, minimal dancing. Most of mine was always singing. I really enjoyed singing, and I enjoyed pop music.

Several years passed and I wasn’t involved in other productions. The director decided she was going to do Mamma Mia! She decided she was going to do that in 2018, and she called me. Mamma Mia! has several adult male parts. She said, “Steve, I would like you to consider trying out for Mamma Mia!.”

I didn’t know the story of Mamma Mia!, but I knew the ABBA music. So I said, “Yeah, I like ABBA Music. I’ll do it.” I got a role in that. It was a pretty significant role. Well, that’s right when I got my diagnosis. So I had been on medication for a little while, but I was still cautious. I didn’t do a lot of dancing at that time, because I wasn’t real sure what I was capable of doing. I pulled off Mamma Mia! pretty well, had a few scares. There was a time I was lifting something heavy, I felt that sensation in my heart and lungs again. And I thought, “Oh, I can’t do that.” I couldn’t move real fast, off stage. I had to move slowly or I’d get short of breath. My medicine had not all kicked in yet, so sometimes my pulse rate would skyrocket to 120, 130.

I was very nervous during 2018, during that production. I was not comfortable with it, initially. Got through it, but again, told people, “That was really, really hard. I don’t think I can do that again.” The next year she did Something Rotten. My wife loves the music from Something Rotten. So I told her, “I’ll try out for a very, very small part and Something Rotten.” I got a small part, one song, maybe two, and that was it. The next year was COVID. We didn’t do anything. The next year she did Chicago, I told my wife, “No, I’m not auditioning for anything. I’m not doing this anymore.”

This year. She did Chitty Chitty Bang Bang. I ran into the director in town and she said, “Well, I hope you’re going to audition for Chitty Chitty Bang Bang.” I said, “I hadn’t thought about it,” but I said, “we’ll see.” I decided I would. Again, I said, “A small part,” and I listed a few roles that I thought I would be good at. After it was cast, I got the cast sheet, and she had given me the lead! I thought, “I can’t do this.” I watched some YouTube clips, and I watched the movie and there was so much dancing. I said, “I cannot do all that dancing.”

I talked to her. I said, “I believe I can sing the songs. Singing doesn’t wear me out.” But I said, “If I’m having to sing and dance, I can’t do it.” I confided in her about my PAH. I told her, “This is my condition. You won’t know what it is, you can look it up. But it really does cause difficulty with breathing, fast heart rate, sometimes a feeling of suffocation. I told her, “I am being treated. I am being medicated. I am being monitored, and it’s managed.” I said, “I’ll do this lead,” but I said, “I don’t know about the dancing.” She said, “We will simplify the dance moves for you.”

Little did I know the hardest thing in the production was memorizing all the line!. There was a lot of lines. I was on stage almost the entire first act, and scene after scene after scene. So throughout the course of the summer, I developed a little more confidence, but I was always nervous, nervous, nervous. I said, “What happens when these performances come? What if I have a bad night, where I don’t feel good?” I talked to my treatment team and we did a six-minute test. I did it as fast as I could, and I passed it with flying colors. I did very well with that .They gave me their vote of confidence.

My medical team said, “Steve, you can do this. You can.” My doctor told me, “Your regimen is one of the most successful that I’m dealing with right now in my practice. You are on the right drugs, you’re keeping your weight down. Your diet is right. You’re exercising.” He says, “You’re doing all those things we want our patients to do so they can do the things they really want to do. In your case, it’s theater. You want to do this production. They’ve cast you in this production. You’re capable of doing this production.”

They gave me the vote of confidence. I approached the rehearsals, all summer long, with a sense of hope. I said, “I absolutely know I can pull this off. I can do this. They’ve modified the dances for me, the singing is in my range.” Much of the musical, I was sitting in the car, pretending like I was driving. So a lot of it, I was sitting down while I was singing. So I really looked at every aspect of that.

Mid-September we performed it, first night was great, which gave me more confidence for the next night. Which was great. Then the third performance, and the fourth performance. So I was really, really, really pleased with the production, my ability to perform in the production, my accomplishments when it was done, and the vote of confidence that both the director gave me, and my support team gave me.

I do recognize that everybody’s diagnosis is different. People’s level of abilities are different. I’m not at a stage in life yet where I’m on oxygen. I may be one day, and that may limit my abilities. The direction my doctor often gave me was, “Do what you feel like you can do. If you feel like you can hike, hike.” He told me one time, “Don’t hike a trail with a super steep incline, because you know you can’t do that. Read the trail guides, and find the easier trails to do.”

I’m 61 years old, so I don’t have to do what I did when I was 25. I can’t. But I can do the things at 61 that I want to do right now. That’s what I tell people who talk to me about their situations. “Do you think you can walk a block? Do you think you can walk around the block? Do you have to stop? It’s okay to stop.” There are days that are bad. There are days when I go down into the basement to do something at my house, and I come back up the stairs, and I struggle.

There are days that are not bad. I just have to realize, on those days that are not bad, do what I think I can do. And the days that are bad, it’s still the same message. Do what I think I can do. It might not be as much as the good days, but what can I do? And do it. Sometimes I mow the lawn with no problem. Other times I mow the lawn, and it’s difficult. I still mow the lawn. I don’t say, “Well, I had a bad day mowing the lawn, therefore I’m not going to do it anymore.” No. “I had a bad day mowing it, and I had to stop. And I had to sit down and I had to catch my breath. But that’s not every day.” So I keep doing it until I can’t. When I know I can’t do it anymore, I’ll have to say, “Well, it was fun while I could.”

About a year and a half, two years ago, I was dealing with anxiety about the condition, not depression, but anxiety. I was nervous about, “What comes next? What happens if I do get worse? What happens? What happens? What happens?” I was nervous about things that hadn’t happened yet. I told this to my primary care physician. He said, “Steve, why don’t you talk to somebody about that?” He recommended a therapy group. I’d never pursued therapy. And you know what? I found somebody whose specialty was helping people with transitions in life. He dealt with older generational people. I began to talk to him about the anxiety.

And you know what? If I hadn’t done that, the year prior to Chitty Chitty Bang Bang, I might not have been able to do Chitty Chitty Bang Bang. But by the time Chitty Chitty Bang Bang came around, I’d gotten a real good grip on anxiety. How to deal with it, how to face it, and realized what it can and can’t do to me. That’s important to me.

My name is Steve Smith, and I’m aware that I’m rare.

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phaware global association®

Are You #phaware? Pulmonary hypertension (PH) is a rare, life-threatening disease affecting the arteries of the lungs. www.phaware.global