When I was 23, I started noticing that when I would walk I would get out of breath really easily. And at first, I thought I was just out of shape. It took about a year for them to say it was pulmonary arterial hypertension. My life expectancy was close to eight years. Well, I'm only 23 years old, that means I'm doing the math, I'm barely going to see my thirties. And that was definitely not what I had expected from life. One of the most important things that anybody can do while living with PAH is to just be aware of your body, learn how to read, and listen to your body because it'll tell you if you need something. And that's the information that you can talk to with your healthcare team. My primary care doctor was wonderful and he referred me to the specialist that I see now.
One of the most important things for advocating for myself is to be very open with my specialist. I need to tell him everything that's going on. So by doing my own research it really empowered me to take control of my diagnosis and my disease and actually empowered me to make decisions for my healthcare. The online support group community for PAH is incredible, and it's really important as somebody living with this disease because there're so many different parts of this disease that just almost can take over parts of your life. I've been in several clinical studies for medications for PAH because when I was first diagnosed, there were so few treatment options available. When you live with PAH and you struggle to breathe, the only thing that can really help improve your symptoms is to take the medication designed specifically for PAH.
At the end of 2019 and early 2020, I could tell that my disease was getting worse. They decided to try this oral medication. It took a couple weeks because they're specialty meds. One day when I was on a walk at the park with my dogs, walking up a hill, no struggle at all. I got the idea that maybe I could try to go for a little jog because I'd always wanted to. And I remember thinking like, "I'm breathing right, this is breathing, and I feel fine, and I'm jogging." This life I lead today, I'm physically active. I teach high school algebra. I'm successfully managing my PAH and it's not easy, but it is possible.
