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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!

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Erica Hutchison phaware® interview 377

Jul 26, 2022

Pulmonary hypertension patient, Erica Hutchison, discusses her long road to diagnosis which included multiple doctors and cardiologists telling her that her PH symptoms and panic attacks my just be "all in her head." Now, 10+ years post-diagnosis, Erica has a passion for art and music and is working on her Doctorate of Music in composition and theory.

My name is Erica Hutchison. I am 42 years old and I have idiopathic pulmonary arterial hypertension. I was born with a congenital heart defect. About a quarter of the population has it. It's called atrial septal defect. It's a small hole in the heart. My pediatric cardiologist told my parents she'll grow out of it. The hole will grow closed. It didn't happen. It didn't grow closed.

I had no problems that I was actually aware of until I was 31 years old and I became very sick one day. We thought I was just having panic attacks. I just couldn't breathe, in the form of panic, it was just like I couldn't do anything. I was just so scared. My boyfriend took me to urgent care. When we got to urgent care, they said you have the option of either we're calling an ambulance or you can drive her to the emergency room. My resting heart rate was 122 beats per minute. We immediately drove to the hospital. It was just quicker that way.

Once we got there, the doctor came in and he actually diagnosed me with costochondritis, which is an inflammation of the cartilage in the joints in the rib cage. It's something I'd had before. It wasn't a stranger to me so I thought, okay, I'm fine. My heart's just going wacky because I could, everything is really tight and the heart murmur. It came when they did an EKG and they could see it. I was given a referral to see a cardiologist. For the next five years, I started gaining a massive amount of weight while seeing a cardiologist and working out constantly. The cardiologist, he didn't really do very many tests. He did maybe one echocardiogram and a couple of stress tests. They found that my heart was enlarged. That was kind of like a sign that, okay, something is really, really wrong. I continued to see the cardiologist and do my best to work out and diet.

My gynecologist performed a subtotal hysterectomy for me, because I was very sick with some other female problems. I came back to see him two days later and I had gained a massive amount of water weight. He said, “it's like you're in congestive heart failure. I think we need to do something.” So what I did was I switched cardiologists. I went to meet the partner of the cardiologist I was seeing and he immediately diagnosed me with pulmonary arterial hypertension, just off of looking at what little tests I had already done. That was in 2015.

After that everything was a blur. It went really fast. I was put into the hospital. My doctor did a full heart catheterization. They found that I actually had a right to left and left to right shunt in my heart. My heart looks like Swiss cheese from the back. That's why they weren't seeing it on the echocardiogram. I was sent to KU. I was very lucky to have Dr. Timothy L. Williamson and Jocelyn Havener, BSN, RN. They started taking care of me and ever since, of course, it's a progressively terminal illness. I am getting progressively worse, but they have staved it from going so quickly.

It took a good five years of fighting to figure out what was going on with me, because I was still having these attacks that they were saying were just panic attacks and you'll be fine. I was just not fine. It was actually a huge relief, because I had fought so long to find an answer and I fought against people who were saying that this may all be in my head. That made me feel worse. I was like, “I'm not crazy. I'm not having panic attacks. I'm not delusional.” There were doctors that were saying, “Oh, this is somatic disorder of some type.” They were running with that. I'm like, “No!” It was like I was vindicated when they finally found out what was going on. It gave me more energy to keep pushing forward.

I'm a big Facebook nerd. I started searching on Facebook and I found the groups. Online support groups are a very huge part of the journey. You need to find a community that understand you and that you can communicate with about what you're going through. That helps ease the tension in your body, in your mind. The first person I actually spoke with was Serena Lawrence and then she kind of led me to Rebecca Lydenberg and Sean Wyman. He inspired me so much and so did Serena. And of course, Chloe Temtchine. They're powerhouses and they didn't let this disease stop them from living their dreams. They continued to try to thrive despite all of this. I got it in my head that I was going to thrive.

Unfortunately, the year after we lost Sean. I had been planning to go back to school. I just didn't know when, but in 2020 I went back to college and then COVID hit. So, I've been at home online studying music since, but I've been a musician all of my life and that helps a little bit. Right now what I'm doing is composing a few songs. I'm a classically trained violinist, but what I'm composing right now is more contemporary pop. I’m still studying theory on my own, just to kind of do it, because again, I am a geek. I am really wanting my doctorate. It will not be in performance, but I'm looking at musicology, which is just the study of music and compositional theory.

I’m doing a lot of artwork, because I'm also an artist. So a lot of painting and drawing and sketching. I've been a musician since I was born. My mother was always singing. My father plays guitar. My uncle's play guitar. As for myself, I've always seen myself as a musician and then I wasn't really aware that I was an artist until I got sick and I couldn't do anything. When I was younger in high school, I was in marching band, but I could play anything with a reed or string. When I lost the ability to play my saxophone and my clarinets and flutes, it just really hit me hard.

I sort of laid back on playing any music for a while and I just started drawing. I had a really great art teacher. She was amazing with me. She taught me everything from the time I was 14 until she passed away in 2004. It's interesting, she's from Compton, California. She taught Ice Cube and then there's another rapper that she had to get taught and I thought it was just the coolest thing. I started really getting back into playing my violin. I was just like, “I'm just going to go for it.” When I went back to school I was going to get a major in violin performance and then a minor in art. Then COVID hit and I see myself as all of these things. I see myself as a patient who is an artist and who is a musician and singer and I see myself as all of these things.

The first thing I would tell somebody is that just because you are diagnosed with this disease and it doesn't mean you're dying, you can still go after your passions. You can still find a way to function the way you want to. Where there's a will, there is a way. There really is.

When I went back to school, I found a community of professors that are still standing behind me 100%. Even though I had to switch universities to one that would be able to better accommodate how I need to learn, because the charter is written differently at my school. It's not set up for online music programs, but I found one that it. So my advice would be to build your army while you are pushing for your passions. Keep trying to do what you want to do. You're going to have hard days where you don't feel like you're getting anywhere or it's just too much. Take a day, take two days, take a summer. Relax, and then go at it again. Just don't give up.

My name is Erica Hutchison and I'm aware that I'm rare.

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