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A Message from Gilead

We are truly grateful to have had the opportunity to work with the remarkable Claire Wineland on this article. Claire passed away on September 2, 2018. Those of you who followed Claire's journey know that having cystic fibrosis (CF) did not define her, but it did help her find her purpose. Through her videos and public speaking engagements, Claire spent much of her life "breaking down barriers and helping others understand the reality of living with a chronic illness" in her totally fearless, always genuine, and occasionally irreverent way. She also founded Claire's Place Foundation to help children and young adults diagnosed with CF, as well as their families.

Claire's willingness to take on this project and dedicate her precious time and energy despite her health challenges was a great gift. Her loved ones encouraged us to continue to share Claire's important message, even if it comes with a heavy heart. You have left an indelible mark on this world, Claire. We will carry your words, your wisdom, and your memory with us—always.

Tips for Fitting CAYSTON® Into Your Day | My Cayston Community™

Claire Wineland

I'm a results-oriented person. I take CAYSTON because I have seen a positive impact on my respiratory symptoms and lung function. I am also able to consistently fit it into my unpredictable schedule.

My schedule changes a lot. So planning out my day and taking advantage of CAYSTON's flexible dosing schedule help me stay on top of my treatment. Usually, I try to take CAYSTON around 10 am, 4 pm, and 8 pm. But when that routine doesn't work, I've found that I can find a way to fit all 3 doses of CAYSTON into my schedule—as long as doses are taken 4 hours apart.

I make my living as a public speaker, which means that I travel a lot, sometimes twice in one month. I often start the day at an airport in one city and end the day at an airport in another. The events where I speak tend to be fairly long and sometimes cut into my planned treatment time. So I have to work my treatment schedule around my work schedule.

Because my schedule changes so much, I like to plan out my day in the morning and pencil in my medication schedule depending on what my day looks like. For example, if I know I am traveling all day, I will plan to take my CAYSTON and other medicines when I am waiting around at the airport. This way, I can go to the nearest airport lounge and find a quiet space with a flat, stable surface to take my CAYSTON. Of course, planning doesn't always work out, so I've found that it's important to be flexible and I'm not embarrassed if I have to whip out my nebulizer in a public space.

Because my schedule changes so much, I like to plan out my day in the morning and pencil in my medication schedule depending on what my day looks like.

For me, it's helpful that it doesn't really matter what time I do CAYSTON, as long as I wait 4 hours between doses. So, if I have a night where I don't get much sleep and I end up waking up at noon, I am still able to keep on the 3 times per day schedule. I just do my first dose when I wake up, push my middle dose back to between 4 and 6 pm, and I can still get my 3rd dose in by 10 pm!

I've also learned that having all of my CAYSTON stuff—medication, nebulizer, and sterilization supplies—in a bag and ready to go at all times is important. I keep the bag in my treatment area at home and use it each time I take CAYSTON. After each treatment, I simply clean my equipment and repack so that the bag is ready for my next treatment. It's important to know that you'll get two ALTERA® nebulizer handsets in your first shipment and one handset in each additional CAYSTON shipment. So, I have at least three ALTERA nebulizer handsets to use each day I'm taking my treatment. That means I have a handset I can store in my "to go" bag, and I can batch disinfect all my handsets at the end of the day. The only time I ever forget to bring medications with me is when they are not pre-packed and I am in a rush to get out the door.

Another thing that helps me is knowing where I can find a private room when I am out and about. If I am somewhere busy, I try and locate a private room that I can sneak away to and do my treatments when the time comes.

Timers are also my best friend. I give myself an hour window to begin taking each treatment. I set the alarm on the timer to go off at the beginning of the hour and at the end of the hour, which serves as a final reminder that my treatment window is closing.

Another thing that has always helped me stay on track is picking a TV show or YouTube video that I really want to watch and only letting myself watch it when I am doing my medicines and treatments. I find that the time passes much faster when I'm watching a show at the same time. Also, if what I'm planning to watch is scheduled for a certain time of day or night, it can also serve as a way to help remind me to take my medicine on time.

I commit to the CAYSTON schedule because I've been able to make it work in my busy life. It may take some planning, but if you plan your day first and then work CAYSTON into that schedule, you can find a way to stay on track.