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Managing Pa: A Parent’s Perspective | My Cayston Community™

kat porco

I am grateful that I was unaware of the implications of chronic Pa when my daughter, Maylie, was first diagnosed. At the time, I was new to cystic fibrosis (CF) and not a part of social media, so I did not understand its potential impact.

The Pa diagnosis brought a whole new host of fears and countless questions. At that time, we did not have the incredible care center that we now have in Montana. So, we struggled with access to education and support for what a Pa diagnosis meant for our daughter. I was so overwhelmed at first that I didn't even know what questions to ask when we had the opportunity. We had been told that we had to be vigilant about ensuring that Maylie consistently treated the Pa bacteria that she was culturing, in addition to the other treatments her doctor prescribed.

Then, I began doing more research. Our care team told us that Pa could lead to a decrease in lung function and worsening breathing symptoms. Plus, we had been told to add another treatment to Maylie's already overburdened regimen. For me, the palpable concern was not (and is not now) the time it takes for Pa treatment—which can of course be frustrating—but rather how Pa might impact Maylie's health. Disheartened does not even begin to describe my emotions, thinking that she had already acquired this common bacteria.

As I became more educated about Pa, I realized that offering an age-appropriate amount of information about Pa allows Maylie to understand the reason for making inhaled antibiotics non-negotiable. In reality, it can be challenging to find the right words to explain the concerns around bacteria like Pa. So, we also like to have Maylie track her symptoms and share them with her care team. It's empowering for her to be able to keep track and report this information back at clinic visits.

As I became more educated about Pa, I realized that offering an age-appropriate amount of information about Pa allows Maylie to understand the reason for making inhaled antibiotics non-negotiable.

Our lives are no doubt heavily dictated by CF, but we take as many opportunities as possible to be "normal," enjoying the landscape of Montana by camping, hiking, biking and skiing. CF demands a strong commitment to therapies; ingenuity allows us to live "unplugged" and still adhere to our care plan. Portable therapies, like CAYSTON, help us to achieve more balance. We are able to pack CAYSTON in a backpack, find a beautiful view with a flat stable surface, and keep up with Maylie's therapies no matter where our adventures take us. Being flexible in managing this disease is one way that we can remind ourselves that CF does not hold all the control and that we are a family first.

As for Maylie, she is unwilling to take shortcuts in her care. At twelve years of age, she is a partner in her CF management. She knows the impact her therapies have on her and that taking CAYSTON as prescribed may help her breathe better and improve her lung function.

It is so important to remember that we as parents set the example. How we manage our children's care when they are young will guide how our children will manage their care as adults. We must model the behavior we wish to see. If you view CF as a burden and inconvenience, your child will not learn the importance of self-care and prioritization. Be an example of adherence, and your child will grow up feeling that his or her commitment to treatment is valued and worthy of the time that CF demands.