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Post by Amanda Walker

Traveling with CF

Shortly after our son who is 3 was diagnosed with cystic fibrosis, I wondered if this would put a hold on our current lifestyle. We traveled A LOT. With us living in Nashville and all my family living in California we went back and forth, frequently, and still do. We had annual passes to Walt Disney World, as well. I was concerned that with all the treatments and meds, where could we find time to travel? Would the airplane germs be bad for him? Would we need to buy an RV and travel across the country by car?  Could we ever go to Disney World again because of the amount of people (read GERMS)?

  Our doctors were very reassuring and, once we had Emmett’s schedule of treatments and meds, we adapted and were back to traveling! When I was asked to write for PTI, I had this idea to help the parents of those newly diagnosed with tips to help make travel easier. Traveling is stressful enough. Add onto that vest equipment, nebulizers and the laundry list of medicines. These are just some tips other CF moms have shared with me or that I have learned from firsthand experience. I am by NO means an expert! Some things that have worked for our family may not for yours. If just one parent is helped by this, then I feel it has been worth it!

 First, a fellow CF Mom had a genius tip for me! When Emmett was just a few months old, I was one-by-one opening his Creon capsules and dumping them into his mouth. She told me what she found helpful were sterilized and never used eye contact cases. You could prefill each side with how many you needed and simply unscrew the lid and dump them in his mouth quickly. It was a game changer! Perfect to fill in some spare moments at home and toss them in my bag. Also great for Dads who may not carry a bag! You can prefill them with your child dose and stick them in your pocket! Very handy!

 Second, when flying, always ask for a “medical pre-board”. With Emmett my main concern when flying is always germs. Especially when flying. Who knows the last time those trays and arm rests were sanitized?! You don’t need to ask while checking in at the ticket counter for the pre-board. Wait until you are past security and at your departure gate. Head to the gate agent and tell them you need a medical pre-board for your child (or yourself if you have CF). By law they cannot ask you why you need one. They sometimes ask if you need extra time to get down the jetway or need a specific seat. You DO need a specific seat – one that has been sanitized from your protection! So, when you pre-board before all the other passengers, take this extra time to sanitize your seats and tray tables. I take the mini packs of Lysol wipes as well as the small travel cans of Lysol and then I disinfect not only Emmett’s, but our entire family’s area of the plane. Seats, trays, head rests, arm rests, seat belt latches etc. I know some CF patients wear masks in airports and planes. Emmett’s doctors told us if he did, great, but if not, it was ok. We have tried the masks a few times, but he has yet to wear them the entire duration of a flight. And that’s ok. Another great benefit of the medical pre-board is the assurance of getting the coveted overhead bin space for your carry-on bags! Emmett’s vest came with this wonderful travel rolling bag that is considered carry-on size. Every part of the machine and the cords fit perfectly into it. We NEVER check that, and I would advise anyone else not to as well! We also have all his meds in a separate carry-on. So those two bags always go into the overhead bins. Only once have I been asked to check it and once I explained to the flight attendant what it was and how expensive they are, she quickly found space for it in the plane’s front cabinet. Typically, I have found most flight attendants to be very respectful and accommodating if I need to explain the situation a little further (like after getting a weird look for spraying everything down with Lysol).

 Lastly, here are just a few tips for traveling to Walt Disney World with someone with CF. Emmett’s first trip to the parks was when he was one year old. I had been extremely worried about the germs there until I had lunch with my friend whose daughter has CF. She said, “who’s to say this table we are sitting at has less germs than one at Disney?” And she was correct! You can never really know! That put my mind at ease. We still go into the parks with loads of hand sanitizer (which we apply after every ride!) and travel-size sanitizing wipes.

  Disney World has what is called a Disability Pass. You can obtain this from guest relations at the front of every Disney park. You simply bring your tickets and the person with CF with you. They may ask you a few questions, again, they never really can ask you directly why you need it. However, I usually tell them just to be clear. This pass allows you to virtually be in a line that has an outdoor queue. To use it throughout the parks, you will go to the “fast pass” line and the cast member will scan everyone in your group’s tickets. You will then return for the ride at the time they tell you. It is really handy, especially when the temperatures are soaring in Florida! One thing I should make you aware of is that you can only virtually be in line with the Disability Pass for one ride at a time. This is a true time saver and it also allows you to not have to wait in line outside and become dehydrated.

  Dehydration brings me to my next tidbit. Disney World has free ice water available anywhere meals are served in the park. While you may want to bring your own water bottle in, know that this is available, too, should you forget or simply don’t want to pack just one more thing.

  I hope these tips will help you while traveling! Again, I’m not a professional. I’m just a mom sharing some things that have worked for our family while traveling. There is so much to think about while traveling with CF, but oh, is there so much to explore out there! Go live life!

Other posts by Amanda Walker

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Our Community Column is a home for thoughts and opinions of members across the cystic fibrosis community. Sometimes serious, every so often lighthearted, but always engaging. It is our duty and privilege to listen to these stories and to share them with others.