Traveling with Cystic FibrosisPosted on May 16, 2017

Traveling with Cystic Fibrosis

Written by Stacy Motenko

Travel has always been a passion of mine - so much so that I decided to study abroad in Sydney, Australia when I was a junior in college.  Then a few years after college, I moved back to Australia for seven months. I have eaten sushi in Japan, seen the ruins in Italy and been snorkeling in Fiji.

But as glamorous as that may sound, traveling with cystic fibrosis is complicated and requires immense preparation and organizational skills. I have learned the hard way when I am not adequately prepared for a trip or when my medical equipment fails in a foreign country.

During my time in Australia, I ended up in the hospital with an intestinal blockage and my treatment machine set off the smoke alarm at one of my hostels causing the emergency fire department to come to my room. When I was visiting Chile and Argentina for my sister’s wedding, my breathing treatment machine broke and I ended up having to get an asthma compressor from a local pharmacy and when I was traveling around Croatia and Italy, I came down with a terrible cold and I didn’t have antibiotics with me, so I suffered through my entire honeymoon. 

After many domestic and international trips, I began to compile a list of travel tips and tricks to help others have safe and successful travels. I hope that everyone with cystic fibrosis has the opportunity to travel and experience new things.  When you have cystic fibrosis it does take more time and thought to prepare for a trip, but I hope that doesn’t discourage anyone from doing it.

Prior to your Trip

  • Talk to your cystic fibrosis team before you go and make sure to bring antibiotics and/or steroids with you in case of emergency
  • Research and understand the electrical outlet needs of where you plan to travel as voltage and connection may vary.
  • Know your local care options in case of an emergency
  • Call ahead and make sure your hotel/hostels have refrigerators that you can use to store your medications and microwave access if you are going to be cleaning your nebulizers using a microwave sterilization technique
  • Call the airline ahead of time if you need to bring any heavy equipment with you on the plane (also bring a doctor’s note for this)
  • If you need to take a breathing treatment while flying, you will need to check with the airline beforehand to make sure it is okay and also tell the airline crew when you board
  • If you want to avoid bag check fees or need to bring more luggage than is permitted, make sure to bring a doctor’s note.
  • Check TSA guidelines and permissions required to travel with equipment, medications, food, etc.
  • Make sure you have the appropriate adapters and converters for your medical equipment. I.e. To use the VEST in another Country, you will need an adapter, not a converter.
  • Some compressors DO NOT work in some Countries even with an adapter and/or converter.  I would highly recommend bringing a battery-operated compressor with you instead (ex-Pari Trek S or eRapid) so you don’t need to rely on plugging your compressor into the wall. Make sure to bring extra batteries with you if you are using a battery operated machine.
  • Cleaning your nebs while traveling can be a difficult process, so I would recommend either taking enough nebs with you so that you don’t have to clean them until you get home OR if you have access to a microwave you can use a microwave sterilization bag (except with the mesh head for the Altera handset) OR you can soak the pieces in 70% isopropyl alcohol and rinse them with sterile water and air dry them.  

During Travel

  • Try to guard against germs while traveling (wear a mask, wipe down your seat and hand rests, and wash your hands frequently)
  • Bring a doctor’s note with you that outlines all of your medications and equipment
  • Have your medications in their original packaging/bottles when you go through customs
  • Bring extra medication with you just in case
  • Keep any refrigerated medications cool by using an ice pack and insulated cooler bag (some Countries may confiscate your ice pack)
  • If you need to take any medication while flying, make sure to keep it easily accessible on the plane
  • If you are bringing your VEST with, I would recommend carrying it on instead of checking it because it is fragile and expensive. If you have to check your VEST, make sure the airline puts a “fragile” sticker on it.
  • I recommend carrying on all your medications/supplies in case the airlines loses your bag (I use the spirologics breathe-and-go backpack that was designed by a person with Cystic Fibrosis and has insulated pockets and various compartments)
  • Transparency is key - especially when going through security screening at airports, the more you reveal and put out for visible inspection, the less questioning you get. Taking a vest machine and nebulizer machine out of your bag and putting it in a separate bin often eliminates any further screening, but at most might just require a simple swabbing inspection that only takes a minute or two.

Once You Are There

  • Jetlag is a real thing, allow yourself time to rest and recover after long travel days
  • Most importantly, have fun and do not let cystic fibrosis stop you from seeing the world!

More Resources for Traveling with Cystic Fibrosis

https://www.cff.org/Life-With-CF/Daily-Life/Traveling-With-CF/
http://www.cflf.org/blog/tips-travel-cf
http://www.cysticfibrosis.ca/uploads/intro%20to%20treatment/EN_TRAVEL_TI...

 

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