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Taking CAYSTON® on the Go | My Cayston Community™
We imagined a quiet life, defined by adventure, laughter, and days filled with gratitude. Life with cystic fibrosis (CF) does not inhibit that outcome, but it does complicate it. Two daughters living conflicting lives in the same home: one constantly fighting infection and disease progression, the other fighting the fear that lives within her heart for her sister’s constant medical hurdles. We stand up to the arduous task of finding equality in an inequitable situation.
CF draws a line in the sand when it enters your life. Flexibility is a distant memory, with rigidity filling that gap. Days become carefully and meticulously planned, as we attempt to stay on top of all of our therapies without becoming resentful for the time that is demanded by CF. Life with Pseudomonas aeruginosa (Pa) is measured by medication, and days are ticked off by the doses left in each antibiotic cycle. The trash fills with miniature bottles and rubber stoppers, empty space in a cardboard box tells us our position in the timeframe of 28 days.
We as a family choose to challenge the daily constraints of CF while ensuring our daughter Maylie does all of the treatments recommended by her care team. It’s easy to stay home and keep up with routine, but that lacks adventure and the opportunity for familial growth. CAYSTON’s flexibility and portability help us as we strive to meet this challenge.
We choose to travel despite the planning and obstacles that CF dictates. We know that we have to do more planning and troubleshooting, but it’s worth it to our family.
When CAYSTON was introduced to us, I felt overwhelmed by yet another medication that was entering our lives. Unbeknownst to me at the time, CAYSTON had some attributes that would help make it a manageable part of our treatment routine, including a fast nebulization time of typically 2-3 minutes (not including cleaning and disinfection time), and it was portable. The flexibility of dosing allows us to plan our inhaled antibiotics around our busy and active lifestyle; as long as we take 3 doses a day, at least 4 hours apart, we can be flexible and adherent. To ensure Maylie gets her complete dose of CAYSTON, we make sure we are in an environment with a flat, stable surface to prepare her doses and that she is sitting in an upright position to take the dose.
We do not have to prioritize being home at specific times, because during her CAYSTON cycle, Maylie’s been able to hike in the Beartooth Mountains and pull out her ALTERA® nebulizer while sitting on a bench overlooking a spectacular view, hike into a lake and take antibiotics at a picnic table, and ski into a hut and hunker down by the fire and keep up with her antibiotics.
Here’s what we learned about managing and sticking with our treatment routine during our most recent family adventures:
South Africa: Traveling internationally can be a challenge without CF, let alone with all the necessary medications and devices to keep up with CF therapies. We value this opportunity, so we make sure to make it as seamless as possible. We call TSA as far in advance as we can, letting them know all of our travel plans, the diagnoses that Maylie has, and what medications we will be traveling with. TSA is great to work with and generally meets us prior to security to take us to a private room so that Maylie’s medications and devices are as safe from exposure as possible. We have all of Maylie’s medications in one bag with a prescription list from her doctor and all devices in another bag. This makes it really easy for TSA to help us through the check-in process.
Camping: Camping is something that both my husband and I valued in our childhoods and dreamed of doing with our family. It allows us to leave the chaos of our everyday lives, disconnect from technology, and enjoy the mountain air. Obviously, CF does not allow us to be totally disconnected, but having the ALTERA device allows us to keep up with antibiotics even without electricity. We always pack cleaning supplies and more batteries than we think we will need, bring along a couple of extra doses in case our trip is unexpectedly extended, and make sure CAYSTON is kept at room temperature (less than 77 °F). We always want to make sure that our planning does not negatively impact Maylie’s treatment regimen.
Five Weeks Traveling in Europe: When Maylie was first diagnosed with CF, the notion of traveling abroad for an extended period of time seemed unfathomable. However, as she became older, we became savvier about complex travel. When she began using the small and lightweight ALTERA, the opportunities seemed a bit more attainable. We choose to travel really light (everyone in the family has one school-sized backpack), which demands that we are as organized as possible. We keep everything CF related in my husband’s backpack, since it is the largest. When we traveled throughout Europe, we knew it would be difficult to find receptacles and adapters for every country we went to, especially the more remote locations. So, we purchased a battery charger in Europe and four sets of batteries. This allowed us to charge all the batteries when we had access to electricity and we never had to worry about missing therapies while enjoying the Italian Alps and the beautiful lakes of Slovenia.
We have chosen to leave our comfort zone, to challenge the system of chronic disease, and to live presently amidst the copious hurdles. We choose to travel despite the planning and obstacles that CF dictates. We know that we have to do more planning and troubleshooting, but it’s worth it to our family.
Living with CF can be complex and demanding, but having access to devices that allow us to be more flexible allows us to stay on top of Maylie’s therapies.