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  • Mark treated with CAYSTON

Hacks for Taking CAYSTON® on the Go | My Cayston Community™

mark levine

It's comforting to know that I have help in my fight against chronic Pseudomonas aeruginosa (Pa) in cystic fibrosis (CF). For me, CAYSTON has been helping to improve my breathing symptoms and lung function.

CAYSTON allows me the flexibility to fit my Pa treatment into my busy schedule. As someone who works full-time, has a family, and likes to travel, flexibility is the key to managing my treatment regimen. Here are some hacks and hints on how I make CAYSTON work for me.

As someone who works full-time, has a family, and likes to travel, flexibility is the key to managing my treatment regimen.
Hack 1: Get Organized

As soon as I receive my 28-day course of treatment, I unpack the shipping box and put CAYSTON directly in the refrigerator since I rarely start my treatments on the day I get my shipment. I also label my nebulizer boxes with the expiration date to make sure I use the oldest first. When I am ready to begin my 28-day treatment regimen, I remove one of the two trays from the fridge (half a treatment cycle's worth) and put the tray into the cabinet I have set aside for storing my treatments. Since CAYSTON can remain unrefrigerated at room temperature (less than 77 °F) for up to 28 days at a time, I find that placing the medication somewhere I look every day helps me to remember to pack it and take it with me.

Hack 2: Pack It Up

The bag I use to transport my CAYSTON and ALTERA® Nebulizer System is important. I found that the bag included with the ALTERA is an excellent choice. The black bag has two compartments and fits the square plastic container (5”x5”x2”) that I use to transport and clean the handset. Using the container, I can wash out my handset when I travel with it knowing that it will stay safe and clean.

Last year, I also began using the CAYSTON Carrying Case offered by Gilead. This is a little larger and allows me to safely carry around the ALTERA, while giving me room to pack my plastic container, extra treatments, and an inhaler.

Each morning, when I am packing up my medications for the day, I make sure that my CAYSTON treatment bag contains a minimum of three doses of CAYSTON vials and saline ampules. Using either one or two bags means that I keep all of my CAYSTON treatment parts together and easily accessible. It makes it easy to do treatments at my desk, at the gym, or on the plane.

Hack 3: Use Rechargeable Batteries

Recently, I began using rechargeable batteries that I exclusively designate for my ALTERA. This way, I am not throwing my money away on batteries. It is helpful to have two sets of batteries so that one set is always charged and ready to go. If I swap batteries every two weeks, I never run into any issues with battery life. I also make sure to keep the power cord to my ALTERA handy so it is easy to find. I like to bring the cord with me when I travel following the mantra, “it’s better to be safe than sorry.”

Hack 4: Take It Where You Are Most Comfortable

When I am at work, I do my treatments out in the open either at the counter in the gym or while sitting at my desk. This minimizes the details surrounding a treatment such as booking a conference room, going to medical, or walking out to my car. I always make sure I am taking CAYSTON on a flat, stable, and clean surface. When doing a treatment at my desk, usually no one is present. But, if I have a visitor I feel comfortable with, I say something like, “I have to inhale an antibiotic for an infection that I have. I cannot talk for about three minutes so explain something to me or tell me a story.” When I am through with my treatment, I rinse the handset in the plastic container, allow it to air dry on a fresh, clean paper towel, and put it on an out-of-the-way part of my desk.

Sometimes, I find myself in a situation where I am not comfortable doing my treatment in public. It helps that the ALTERA is so quiet. Finding a secluded place is not usually that difficult. My strategy is to stay out of the direct line of sight of other people (eg, sometimes when I am at my desk, I simply turn around and face the wall). If you do not make a big deal out of it, I’ve found that most people will not either. Depending on the circumstances, I do what works for me. But the important part is that I do it.

Hack 5: Make CAYSTON Work in My Schedule

My afternoon schedule is not always predictable, which is when CAYSTON’s flexible dosing really makes a difference. I know that as long as I do my second treatment of the day before 6 pm, I will be able to do my third treatment four hours after that, before I go to sleep. Not having to worry much about spacing out the 3 doses, other than making sure to take them 4 hours apart, is a huge advantage. This is also handy on the weekends when my first treatment of the day does not happen until late morning.

Hack 6: Handsets, Handsets, Handsets!

Having multiple handsets is especially helpful when traveling. In your first shipment of CAYSTON, you will receive two handsets. In each additional shipment, you will receive a new handset. Over time, you should have enough handsets on hand to get you through a full treatment day. It is important to rinse the ALTERA handset, at a minimum, after each treatment so that the handset does not get blocked by medication. This allows you to thoroughly clean each handset when you return home and disinfect all handsets at the end of the day.

For me, CAYSTON helps improve my breathing symptoms, is easily portable, and allows for flexible dosing. With some creativity, it is manageable to fit into any schedule.