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  • Getting started again
  • Getting started again

Getting Started Again | My Cayston Community™

robin hill

When I was in college, I struggled with prioritizing my CF and Pseudomonas aeruginosa (Pa) treatments, academics, and my social life. At the time, I felt that my health was “good enough” and that stopping would not make a large impact. I struggled to make a consistent treatment schedule and sacrificed my health to fulfill academic and social expectations at the time.

After stopping CAYSTON, I felt myself struggling to keep up with everyone around me. I would opt out of activities that involved lots of walking and limited my activity levels as much as I could. I did not realize how much my lungs were struggling to keep up. During this time, I had two major hospitalizations that forced me to take a leave from school. At that point, I knew I needed to prioritize my health over everything else and fully go back on all my treatments to help alleviate my breathing symptoms. I learned more about Pseudomonas aeruginosa, what colonization is, and how it affects me from my CF care team. After talking to my team and asking questions, I felt more educated, which helped me make better decisions about my treatment.

After discussing the benefits and risks associated with the treatment regimen with my care team, I was motivated to re-start on CAYSTON.

After discussing the benefits and risks associated with the treatment regimen with my care team, I was motivated to re-start on CAYSTON. Once I started getting into a routine, I did not find it difficult to stay compliant. The second time around, it was easier because I prioritized my treatments and created a personalized routine. By planning ahead, I was relieved to know that I do have the ability to fit my CAYSTON treatments into my life.

Once my care team reminded me about the daily treatment regimen of 2-3 minute* nebulization time, 3 times a day, 4 hours apart, I found that creating a personal schedule was the key to my compliance with CAYSTON. If I am busy in the mornings, I need to set up my nebulizers the night before. If I had class or a meeting at noon, I would push my second dose to 1:30 or 2:00 PM. Having a plan is the crucial piece to making CAYSTON work for me. During graduate school, I was pulling 50 to 60-hour weeks between classes, an internship, and work. By ensuring my ALTERA® machine is prepared and ready for use on a flat, stable surface, I had no problem doing my treatment despite a crazy schedule.

I greatly regret slacking on my treatments during my early 20s. I learned the hard way that my health is the most important thing in my life, and it is my job to advocate for myself. It is possible to stay on track with CAYSTON with the proper preparation and scheduling; it just comes down to prioritization. Additionally, I learned that if I was feeling overwhelmed, I should not be afraid to ask for help. I am lucky enough to have an amazing family, fiancé, and CF care team who are more than willing to help me with my treatments. I learned not to be afraid of leaning on your support system out of fear of being a burden. Sometimes having CF and Pa can be overwhelming – it’s okay to ask for help from your community.

Your health is one of the most important factors in your life. Do not sacrifice it for anyone or anything. It is up to you to advocate for yourself and take care of your body – no one else will do it for you! A treatment routine can seem daunting at first, but there is enough time for everything, and it is much easier than it seems. At the end of the day, it is your decision. From my experience, I greatly regret not prioritizing my treatments sooner. If I could give any advice, put yourself and your health first always.

*2-3-minute nebulization time does not include setting up, cleaning, and disinfecting your ALTERA nebulizing equipment.