Preparing for Take-Off: Traveling with CF
By Laura Spiegel / Originally written in March 2018
Photo by Aro Ha
Today is the first day of Spring, and if you’re like me, you’ve got three little words on your brain. Spring Break, baby!
In the days of old, that cheer would have likely been punctuated with a pint in hand and thoughts of a possible tattoo. But you’re a bit past that now. You’re in your (ahem) late thirties, you have two kids, and your Spring Break plans entail one overnight stay at a salt water pool in Southern Indiana. Can I get a woot woot?!
What’s that you say? You have a young kiddo with cystic fibrosis? Well, then. Your travel prep will be a bit more detailed than swimsuit cursing and spray tanning.
Traveling with a little one who has CF takes some planning. Those of you who have been doing it for years can probably check out now. But if you’re a relative newbie like me, you might find some of the below ideas helpful.
1. Grab-and-go enzyme packs – These little beauties have saved time and frustration on many a trip in my family. Simply fill a plastic baggie with applesauce pouches; a plastic-wrapped disposable plastic spoon; and your enzymes. If you’re feeling ambitious, you can label the bags “snack” and “meal.” I usually create as many baggies as I envision needing for the trip. Yes, it takes a bit of time up front, but the benefit of simply grabbing and going is fierce. Plus, you can use the plastic bag to rein in the enzyme shells and hand wipes that seem to always take over when eating out.
2. Travel straws – Spoiler alert that this recommendation is not very environmentally friendly. But it is pretty darn sanitary and easy to implement, so I still count it as a win. Head over to Costco or Sam’s Club or my personal favorite, Amazon, and buy a box of individually-wrapped plastic straws. These beauties can be easily opened on the go and plopped into a bottle of Pediasure. As a bonus, you’ll always have extra straws on hand for when the McDonald’s drive-thru fails to provide them. Again.
3. Wabi nebulizer sterilizer – Many of you may already be familiar with this game-changing invention. While it was initially created to sterilize baby bottles, the Cystic Fibrosis Foundation has approved its use for nebulizer parts and masks, as well. I like it because I don’t have to worry about how in the world to procure boiling water in a hotel room. I simply place all the parts in the Wabi, give it a bit of distilled water, and press the magic button. The parts are sterilized and fully dried in forty-five minutes, and if you want, you can program it to re-dry everything every four hours. No more boiling water; no more air drying sterilized parts. It’s all done for you.
The Wabi is admittedly an investment at right around $100 on Amazon. But for my family, it has worked. We’ve been using it at home and away for almost two years now, and its convenience has paid off in spades.
4. TSA agent communication – If it’s your first time flying with a little one with CF, you likely already know that you should never check your medications and respiratory devices. Always carry them on. That being said, be prepared for the TSA security process to take a bit longer than usual. Let the agent know up front that you are carrying your child’s medical device and medications. If they want to open up your equipment to make sure you’re on the up-and-up, explain that it’s important that everything be kept clean and ask them to put on a fresh pair of rubber gloves.
When it comes to prescriptions, make sure your child’s medications are in their original prescription bottles with their labels in-tact. You can also ask your doctor for a note that explains what the medication is and why it’s medically necessary. This can be especially helpful if you are carrying needles and syringes for injection.
When it comes to carry-on limits, rest assured that your medical supplies do not “count” toward your limit. You can still bring aboard one small carry-on and one personal item.
5. Pre-boarding your flight – You know how the flight crew always announces a pre-board session for those traveling with little ones or those needing extra help? You can use this too if you’d like. Pre-boarding can allow you to have ample room to store your vest in the overhead compartment or below your seat. If you are worried about this part of the process, a medical equipment tag can be attached to your machine to identify it as a necessary medical device. You can also bring a signed note from your doctor that explains that the device is your child’s and that it is needed for medical purposes.
Pre-boarding can also give you time to Lysol wipe down your child’s arm rests and tray table. Yes, the wipes stink for a minute or so, but you’d be surprised how many other passengers are starting to do the same thing regardless of health condition. Those tray tables are nastier than Miss Jackson!
6. Leveraging your CF care team – Don’t forget to check in with your CF center before you go for more tips and tricks. They can help with a travel assessment (if needed) and guidance on places to travel both with in the U.S. and globally that have comprehensive CF care centers. They can also provide you with any personalized medical documentation that you might need, such as a health summary; oxygen documentation; a customs certificate for international travel; or documentation for an Equal Access or Disability Pass for theme parks.
7. Learning from the Pros - For travelers seeking more detailed advice, check out the CFF’s web site at https://www.cff.org/Life-With-CF/Daily-Life/Traveling-With-CF/. It is chock full of comprehensive tips about what has worked well for avid travelers within the U.S. and abroad. It also information on your air travel rights; managing CFRD while traveling; logistical considerations for traveling abroad; and more!
And that’s about it for now. The current view from my window is a stunning gray sky and a blanket of muddy slush. Spring Break is in T minus two weeks, so I’m hoping that Mother Nature gets off her keister and gets with the program shortly.
Whether you’re headed somewhere exotic or cruising down I-65 to Southern Indiana this year, I hope your Spring Break is a good one. Beachside cocktails might not necessarily be in store, but I do hear those midwestern salt pools are relaxing.
Just don’t forget to have your little one skip past the hot tub. Five minutes of relaxation in exchange for a date with pseudomonas may not be worth it.