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How Emily Manages Her Pa | My Cayston Community™
When I was first diagnosed with Pa, I was in the hospital. I was woken up in the middle of the night by a medical student who asked me "Did you know that you have Pseudomonas in your lungs?" I didn't know much about Pa at that time, but I knew enough to know that it could have a negative effect on my lungs. That whole experience freaked me out and was not an awesome way to find out that I had this infection!
Becoming more educated about Pa and its effects was the first step in treating it. My cystic fibrosis (CF) team, and in particular my nurse, worked to explain what this diagnosis meant to me and my parents. I realize now that I wasn't listening as well as I should have been. I understood "enough" to get a general idea of what Pa was and that there were medications available to treat it.
I know now that it is very important to treat Pa. My doctor told me that, if left untreated, my breathing symptoms could get worse and I may see a further decline in my lung function.
My lung symptoms really began when I first started culturing Pa several times a year. That's when I found out that I had chronic Pa. I was experiencing a productive cough and thick mucus, which would sideline me from school for weeks at a time. And, because my lung function was dropping, I was having a hard time keeping up with my regular routine.
I know now that it is very important to treat Pa. My doctor told me that, if left untreated, my breathing symptoms could get worse and I may see a further decline in my lung function. I've worked with my care team to create a treatment plan that works for me. I can feel the impact when I stay on track with my Pa regimen, especially on the junk (aka mucus) that I am coughing up. And, I'm able to breathe better.
However, even after years of treating Pa, I sometimes find it hard to fit in multiple treatments per day. I still lead an active life. Cleaning and disinfecting the nebulizer takes time, and it can be hard to stay on top of. I've found that you've got to get a system down that works for your day and your lifestyle! So, I disinfect all of my equipment at the end of every day instead of after each use.
Some advice that I can offer to those who may be struggling is don't get discouraged. Just try your best to do all that you can to stay as healthy as possible. It's super inspiring to see my buddies with CF all over the world living active lifestyles and accomplishing their dreams. We are able to encourage each other through social media. And, it is so motivating to see examples of people in our community who work tirelessly to stay compliant with their medications while doing the things that are most important to them. No matter where I am on this journey, I will always push myself to do more to help improve my health.