When your life is already jam-packed with nebulizing medications, why would you add one more?
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Before you can walk a mile in a person with CF's shoes, you have to put on a nebulizer.
I was nervous about deciding to go to college — how would CF and the intensity of college fit together? There have been more than a few bumps along the way, but I’ve learned that through everything, I got this.
I initially struggled with how to share about my cystic fibrosis with people I met when I started college. Here’s what I learned.
When I was in college, I wanted to do it all and my health wasn’t as much of a priority anymore. I learned to accept that things will not always go according to plan and to integrate routine in my life to ensure my health comes first.
When I went off to college it was up to me to manage my cystic fibrosis for the first time without help from my family. I felt fine after skipping my medications and decided to stop using my noisy vest because it embarrassed me, and I wanted to make friends at my new school. As a result, I stayed in the hospital for a few weeks and left with a new perspective on life.
At first, it was easy to get my son to do his cystic fibrosis treatments. But as he got older, he started to hide his medications, rather than take them. I finally learned how to get him to see the importance of taking his medications.
Having already been underwhelmed by Orkambi® and Symdeko®, I was skeptical about whether the triple-combination therapy would live up to the hype. However, after a month of being on Trikafta®, I feel improvements in my lung function, weight, and overall energy.
The imagination can run wild thinking of all the possible scenarios that could happen after trying the new triple-combination modulator, Trikafta™. Managing expectations -- while allowing yourself to hope -- is how I choose to approach my wait for the new drug.
As a CF pharmacist, I've received many questions about complementary and alternative medications and supplements over the years. Although I am admittedly not the first person to “jump at the idea,” I always make sure to stay informed about available products and listen to my patients without judgement so that we can partner together to develop the best treatment plans for them.