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Managing Misconceptions | My Cayston Community™
I started taking CAYSTON when I was in my early teens to treat the chronic Pseudomonas aeruginosa or “Pa” infection in my lungs. Being young, I didn’t understand a lot about how CAYSTON worked, and I had a lot of misconceptions about it. Here are some of those misconceptions and the information my care team provided to me that helped clear them up:
I had concerns not only about how well it would treat my Pa but also about how I was going to fit this new treatment into my day. Completing a dose 3 times a day, every day for the 28 days of my CAYSTON month sounded daunting. I had a busy social life, in addition to playing soccer and tennis, and was worried about how I would be able to do this additional treatment. I originally thought the CAYSTON doses needed to be spread exactly the same distance apart throughout the day. My medical team went over the instructions and explained that as long as the doses are at least 4 hours apart, I could still get in all 3 daily doses in an appropriate timeframe.
I was also worried about how CAYSTON would fit in with all my other CF treatments. As a young adult, I needed clear instructions on the correct order to take my therapies and medications while also taking CAYSTON. It was explained to me that I should do my treatments in the following order: bronchodilator, mucolytics, airway clearance therapies, all followed by CAYSTON. The bronchodilator goes first to help open my airways and also to help keep my lungs from spasming. The mucolytics are next. They loosen the mucus and then my airway clearance therapies help to clear it out. Once that’s done, it’s time for my CAYSTON.
I was also under the impression that CAYSTON needed to be refrigerated at all times, but later found out from my care team that I could keep the month’s dose at room temperature once I began. This meant I did not have to worry about refrigerating my CAYSTON throughout the 28-day treatment cycle.
When I first started my treatments, I was only disinfecting my ALTERA® handset every couple of days. I normally would rinse it off and let it air dry in between uses. However, I was quickly informed that I needed to clean and sterilize the device after each use to prevent future infections. “Pro tip”: I started rotating through multiple handsets during the day so that I could do a larger batch of sterilizing at the end of the day.
I also used to think that I could use my ALTERA device for my other inhaled medications for my lung clearance therapies. This was a simple mistake since they all look pretty similar from the outside, but I now know that they aren’t, and you should only use the ALTERA for CAYSTON.
As you can see, it was easy for me to have these misconceptions about taking CAYSTON. But it was even easier for me to learn the facts and to clear up these misconceptions. I hope I was able to help you clear up some of yours. If you have any questions about CAYSTON or the ALTERA, be sure to speak with your care team at your next clinic visit.