Receive how-tos, hacks, and helpful tips from members of the CAYSTON® community straight to your inbox.

Talking About Treatment Options | My Cayston Community™

Chris Kvam

When I was diagnosed in 1984, there were no specific lung treatments for cystic fibrosis (CF). I was not immediately prescribed a complex daily regimen. My parents were told that it would be dealt with when I got sick. Today, we know that consistent use of maintenance therapies is critically important. Fortunately, we also have an arsenal of treatments available to choose from. However, in order to be effective, the daily routine must be manageable and sustainable. And sometimes that means that choices must be made. I want to share a bit about what that decision process looks like for me and my CF care team.

Managing CF with my care team means educating myself about treatment options and playing an active, central role as a member of my care team. I believe that it is not necessarily the responsibility of my care team to be my sole source of information about CF. It is important to take personal responsibility for your CF knowledge. For me, that means paying attention to updates from the CF Foundation treatment pipeline. By doing so, I keep track of available clinical trials I might qualify for, and learn about new medications, so that my care team and I can determine if it is the right option for me. I read relevant medical journals. I rarely rely on social media for news about CF treatment options. There is often a lot of misinformation out there, as well as a lot of dangerous information regarding unapproved alternative therapies.

Managing CF with my care team means educating myself about treatment options and playing an active, central role as a member of my care team.

Knowledge is only half of the equation. The other half is conversation. I do not hesitate to ask my care team about new treatments. I often make a list of things I want to talk about before going into clinic so that I don’t forget anything. I start the conversation with, “Have you heard about…?” Don’t rely on your care team to know what you want to talk about on any given visit. They will appreciate your initiative, regardless of whether or not you ultimately decide to pursue a new treatment option.

There are a lot of things to consider when deciding whether to add a new treatment to my significant treatment routine, or to substitute a new treatment for one I've been using for years. Of course, safety and effectiveness data are paramount, but I also consider the mode of administration, the number of times a day that a treatment is required, and whether it can fit into the demands of my daily routine. This also holds true when considering treatments that have been approved or available for several years but haven't been part of my routine. Revisiting and reconsidering them as options never hurts, and results in a personal treatment regimen that is responsive to my current health needs.

The most significant conversations with my care team usually involve which antibiotics to use. We consider my current pathogen profile (the bacteria that I am culturing), current health status, and determine whether adding a new treatment is going to be worth the time, effort, and potential side effects. One example of how I took an active role with my care team is the conversation we had about being prescribed CAYSTON for my chronic Pseudomonas aeruginosa (Pa) lung infection. I remember initiating the conversation because I had heard that the nebulization time was typically 2-3 minutes (not including set up, cleaning, and disinfecting time), 3 times a day (as long as each dose is taken 4 hours apart). I was interested in the short nebulization time and portability of the ALTERA®.

We have nothing to lose by discussing treatment options with our care team. The discussion is not a commitment to an additional therapy. Having the conversation provides more information to help you decide if adding another therapy could be worth it. You may also find that the conversation results in you being more secure in your current regimen, and confident in the decision not to add additional therapies.

I have every reason to be as educated as I possibly can and as vocal as I need to be to get the best possible care. The cost of not speaking up and being heard can be incredibly high. If a person with CF is not active in the management of their care and the direction of their care team, it is virtually impossible to maximize individual health. If your care team is not open to you asking questions and fully understanding all of your treatment options and choices, perhaps they are not the best care team for you. Educate yourself and push yourself to be actively engaged with your CF care.

At the end of the day, it is your health and your life.