I’m Aware That I’m Rare: Chelsea Price (464)

phaware global association®
9 min readApr 15, 2024

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the phaware® interview

In this episode, Chelsea Price shares her experience living with pulmonary arterial hypertension (PAH). She emphasizes the importance of having a good support system, including her church community and connecting with other friends with PAH. Chelsea is grateful for the good days she has and strives to be an active mom for her children.

Discover even more about Chelsea and PAH at www.OutnumberPAH.com.

My name is Chelsea Price. I live in St. Louis, Missouri, and I have pulmonary arterial hypertension (PAH). Shortly after I had my second son, I noticed that my endurance had decreased. I grew up playing soccer, competitive cheerleading, and I was always very, very active. But after he was born, I had trouble going up steps, just couldn’t catch my breath. We’d be out in the yard and we’d be playing. The next thing you know, my husband turns around and I’m laying on the ground just gasping for air and trying to catch my breath.

I kind of pawned off on being a new mom, not having the time to exercise. My doctors thought I had anxiety. It wasn’t until September of 2019 when my husband and I were on a trip to New York that our view of something being wrong kind of came to fruition. We were biking through Manhattan and we came to this hill and I remember being so frustrated, because he just took off right up the hill and I couldn’t keep up and I couldn’t catch my breath. I just threw the bike down and went and sat and felt like I was so out of shape.

When we returned, I just kind of brushed it all aside. Again, well, my doctor said, I have anxiety. There’s nothing else wrong with me. I was 32 years old at the time, and 32 year-olds don’t get sick. After going back to the agency that I was at previously, I started having some chest pain and some back pain. Every day when I would go up the steps at work, I would be rushing to my desk to sit down because I would be seeing spots. Again, this all went back to me feeling like I’m a new mom, I’m out of shape and I just can’t keep up. I started doing yoga and my back was still starting to hurt more. I thought I was having a panic attack, one day at work, and had asked one of my good friends to just go on a walk with me.

There wasn’t anything to be anxious about at work. It was just again, like you have anxiety, so obviously this is a panic attack. I went to the doctor the following week, which was February of 2020. They said, “Oh yeah, you know what? It sounds like it was just a panic attack.” To me that didn’t feel right in my gut. Something felt more wrong than just being anxious, so I urged my doctor to do an EKG in office just to ease my mind. My family has a history of heart issues, so that’s of course kind of where my head went. They had spotted an abnormality on the EKG.

The following week, my doctor had scheduled an appointment for me to do a stress test at our hospital, but that was also right in the midst of COVID shutting down here in St. Louis. Monday, I stayed home from work not thinking anything of it. I mean, it was COVID, but I was working from home. Tuesday, we kept our boys home from school. They were two and four at the time. Wednesday, my mother-in-law came to stay with us for the two weeks that we were going to be hunkered down. But Thursday morning I woke up and I was in so much pain, my chest hurt so bad, my back hurt so bad, and I’d never felt any pain like that before. So my husband drove me to the emergency room where they started running tests. They noticed that my pulmonary artery was three times the size that it should have been. At the time I did not know what that meant. They ran a ton of blood work and saw that I was in heart failure.

They took me up to the critical decision unit, so I was going to stay for 24 hours for them to figure out what was going on. They took me in to do my stress test and had done the echo cardiogram first. They were like, “You’re not doing the stress test. You’re in heart failure. You have a hole in your heart,” which I didn’t know I had. It was about the size of a quarter, so 80% of my blood was just circulating in my heart and lungs, and only 20% was going to my body. Then, obviously compounded all of that onto having pulmonary arterial hypertension, which was diagnosed the next day during a right-heart cath.

When I was in the hospital, during COVID, it was a very scary time because, one, COVID being a new thing, but also now having this condition that I didn’t know much about, but the looks on the doctor’s faces we’re definitely saying that it’s something serious. I was by myself because my husband wasn’t able to come back in because of COVID protocols.

I had an amazing team that sort of walked me through everything. I was put on oxygen, because my oxygen saturation was dropping into the 70s when I was in the hospital walking just over to the bathroom and back to my bed. They started treatments right away. I was discharged a few days after. I sort of stepped back into the world of now having this rare condition alongside navigating a COVID world.

With having a diagnosis, it was something for me to take action forward, which isn’t something that happened initially in terms of being an advocate for myself, speaking out about what had happened. I immediately hopped on Instagram, because I was so scared because the doctors tell you don’t Google, and of course you do, and then you see all of the stats of things that may or may not happen in terms of life expectancy. I had two little boys at home and a husband that I wanted to see them grow up. I was so scared that I wasn’t going to see that. Sometimes those fears still come up, but at the time it was just, “Am I going to see them go to kindergarten? Am I going to see them play soccer? Am I going to see them turn into little boys?” They were babies at the time.

So having a plan for treatment definitely eased my mind a little bit. Once I was able to get up on the treatments and I started feeling better and I could walk around and I was able to get off the oxygen, there was so much more hope in those moments knowing, “Okay, it’s going to be a battle and it’s going to be hard some days. Some days I’m not going to feel good, but I’m going to be here and I’m going to have a good life and I’m going to be there to see them grow up and to experience everything with them.” That’s one thing that just keeps me going on the days that I don’t feel good, is that I have these two amazing little boys and a husband of 10 years now that we can live a good happy life even in the midst of something that’s scary, because I’ve responded well to the treatments.

Having gone through it during COVID was scary. But honestly, part of me is happy that it happened when it did, because I was working from home at the time at a place that was extremely understanding of what I was going through. So when I was starting up on the medications and having some really tough days with symptoms and side effects, I was able to lay in bed and to rest and to recover and to hop online for meetings if I was feeling up to it. So I’m glad COVID happened when it did. I’m glad I got diagnosed when I did, because I could not imagine trying to go into an office while battling the initial stages of the disease and getting up on treatments.

For the most part, I tend to try to live in the moment, and that’s been a blessing with this disease, because I am 100% type A — go, go, go. Things have to be perfect and all of that. I always wanted everything to be controlled and I wanted to be in control of everything. I think the one thing that this disease has shown me is that you can think about what may or may not happen in the future. Most times, our minds tend to wander further than things are actually going to go, or at least in my case. So I tend to focus, and actually have for the past almost I guess four years, focused on day to day, doing what I can and focusing on what I can control, taking my medications, eating good, walking when I’m feeling up to it and things like that.

I don’t really try to linger too much on the future, because it scares me. I think there’s a lot of hope coming, hopefully with some new medications that are coming out. I really honestly, in the past couple of years, haven’t thought to the future too much. There’s been one time since diagnosis that I’ve really thought about that, and that was a few weeks ago I had some symptoms and things like that after traveling, and that’s kind of where my mind went is, “Oh gosh, is it progressing? Am I going to be here?” But everything is looking good and I’m doing everything that I can to control what I can and enjoying every single moment that I have with my family and my friends.

Even before I was diagnosed, we were somewhat involved with church, just different things in our past that we’ve been through, we’ve lost a child. So getting a diagnosis, I leaned into my church family, I leaned into my faith, because it’s not something that we can carry on our own. So I’m thankful that I have my faith, that I have an amazing church family. My friends and my family have been incredible post-diagnosis, dropping off food. My mother-in-law ended up staying with us for months to help me and help with the kids and my husband. We just have such a good network that without them, I think it’d be a lot darker.

I also, post-diagnosis, found a ton of other friends that have PH that I text with on a daily basis that when I’m having a rough day, we can commiserate. One of my friends and I actually titrate up at the same time on a medication that was really challenging to get up onto. So while I don’t love that we both were going through that, I’m glad that we had each other, because I think it made it a little bit easier. We were able to cheer each other on. Community is so important, and having those friendships and people that will be around you that may not understand exactly what you’re going through, but can see that you’re in a moment of need and can step in and help hold you up is so important.

Day-to-day now, I think sometimes I forget how sick I am. I’m able to go play with my kids and cook dinner and play soccer with them, which has always been a huge passion of mine. That was one of the big goals that I had post-diagnosis and talking to my doctor, is I want to be able to be the active mom, I want to be able to go play with my kids, because my parents were always out there playing with me and I don’t want to sit on the sidelines. It took some time and I did have to change my mindset a lot when I couldn’t do that initially. So again, it just goes back to just trying to focus on the day-to-day and enjoying every single moment. Right now, I’m thankful that I have way more good days than challenging days.

My name is Chelsea Price, and I’m aware that I am 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