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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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Alexis Trotter - phaware® interview 226

Mar 5, 2019


Pulmonary hypertension patient Alexis Trotter discusses living on oxygen 24/7, her passion for hula dancing, what inspired her to become a cardiac sonographer and her love of Camp del Corazon.

Hi. My name is Alexis Trotter, and I am a pulmonary hypertension patient.

I was born with a congenital heart defect and I had my repair when I was four years old. However, after my surgery, I remained symptomatic. The doctors told my parents that I was just doing it for attention. Finally, my mom demanded that they figure out what was wrong with me, and it was there where they saw I had peripheral pulmonary artery stenosis, which caused pulmonary hypertension.

I wasn't really on anything then because there was nothing for pediatric [patients] back then. I had lots of angioplasties to open up the narrowings, but that was my treatment. The really big crossing point for me because I had taken oral medications, they even added Tyvaso, but the thing that was really a tipping point for me was the oxygen for like as much as possible use. That was the point where pulmonary hypertension came to the forefront of my life.

When I was seven, I never realized that at age 27, I would have to traverse, starting a career, dating, like all that stuff with an oxygen tank. But to help me get through it, I just take each day at a time. I named my tank. Her name is Stella the Tank. Sometimes we get along. Sometimes we don't. It's just like baby steps. It's like each day, but I also never let pulmonary hypertension keep me from doing what I want to do.

I knew I couldn't be a nurse because it was too physical of a job for me, so I became a cardiac sonographer so I can still interact with patients, but it's not as physical as a nurse. I always wanted to do it because I spent so much time in the hospital as a kid and the nurses were just so sweet and nice to me. I'm like, "You know what? I have to pay that forward."

I found out about Camp del Corazon through my cardiologist's office and I went there. It changed my life. I thought I was the only girl with a heart surgery scar and there was other kids who had to take medicine. There were other kids who got tired really fast. I got complimented on my scar. Now that I've aged out obviously, it's been a thing of mine to give back what they have given to me because I truly believe I would not be who I was if I would not have gotten to that camp.

The name of the camp is Camp del Corazon. It is on beautiful Catalina Island. It is for children with congenital heart defects. It's staffed by nurses from UCLA. They volunteered their time. Dr. Kevin Shannon from UCLA is also there. It's like a normal camp for kids who are usually told they can't do like normal stuff. We go hiking. We go kayaking. There's a ropes course. There's dances, skit nights. It's like for those four days, us getting tired, that's normal. Like normal people, that's not normal. We're normal. It's like one little four day stretch in the summer where we feel normal.

I just try not to hold back anything. It's never been like "I can't do this." It's like "let's figure out a way for me to get it done." That's why I got a new smaller oxygen tank because the other one was on my back. It hurt my back during clinicals, so I got the small one so I could take it with me into the hospital.

I also am a dancer for fun. I was always really self-conscious about wearing it in dance class for some reason, but my hula sister, she made this little backpack for my tank and I wear it for our shows. I've done a couple competitions. It's always like my mindset is how can I get this done, not like I can't do it, but how can we work around it.

My advice to you is that it's alright to feel at times that it's unfair because it is unfair, and you didn't do anything to get what you're going through, but don't sit in that. You have to pick yourself up and move forward. Find yourself a good support group. I'm not saying you have to find other people with pulmonary hypertension or whatever, because I'm the only person in my family who has it, but I have good friends. I have a good family. Don't dwell on the fact that you have this issue. Appreciate the good things that you do have.

Like I said, I have a good family. I went to good schools. I travel. I love to shop. I get to do all these other things, and I don't let that be my main focus. Just rework your mind. Think not that I can't do it, but how can you do it. You know? If you want to do a 5K, you probably can't run it, but you could certainly walk it. You can go to pulmonary rehab and they'll get you conditioned to do it.

My name is Alexis Trotter and I am aware that I'm rare.

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