Traveling with Cystic Fibrosis

Remembering everything you need to bring when traveling can be challenging for anyone. As you can imagine, it gets even more difficult when you have an arsenal of Cystic Fibrosis medications and equipment to bring along. For years Jesse chose to ignore CF and skip most (or all) treatments when traveling so we’re just now getting the hang of how to pack everything he needs. After a couple of successful trips this year, I thought I’d share some tips we’ve learned for our CF friends who are traveling for Christmas…

  • We try to pack all medications and related supplies in one suitcase. It just makes sense that this is the best way to make sure we have everything and it makes it easier to unpack when we get to our destination. When we travel by air we keep this as our carry-on bag so that there is no risk of it not arriving when we do. When we travel by car we want to make sure that none of the meds get left in the car if we don’t bring everything into the hotel room, and risk them overheating.

Meds bag

  • Also when traveling by air… we like to get a letter from clinic stating that all of the medications, supplies, and equipment are necessary for Jesse to travel with. The meds bag usually gets flagged and checked out pretty carefully (understandable) and we like to make sure we will get through with the needles and all the liquid vials. We also like to make sure we will be allowed to keep the Vest machine and CPAP machine with us as extra carry-ons since they are too expensive to replace if they were to get lost somehow.
  • Since the last two trips were road trips, I just brought the entire container of weekly vitamins. We were gone for more than two weeks both times and it was much easier to fill the pills container like usual instead of trying to count them all out ahead of time. And of course… it never hurts to bring extra Zenpep!

Vitamin container

  • We like to have a separate cooler, other than our food cooler, for the refrigerated meds so that it isn’t getting opened and closed all day. When get to our hotel I empty the meds into the fridge and refreeze the ice packs for the next day.

Cold meds

  • Lastly, Jesse has gotten used to finding a treatment chair to unload all of his stuff when we get where we’re going. The most important part is making sure the treatments actually get done. It’s hard when you’re busy being on vacation, but he feels so much better during the activities of the day when he has done them.

Treatment chair

That’s what works for us. Anyone else have some helpful tips to share?

Allergy Relief on the Way

RxToday was my first visit to the allergy doctor. The office was crazy busy. It was so packed with people getting their allergy shots that there were not enough seats for everyone to sit down. The office was an Ear, Nose, and Throat and also an Ankle and Foot office… weird combination.

We got there a little early and got to witness quite a scene of a family who was refusing to show any type of ID before they were seen by the doctor. The nurse handled the situation very well, and calmly tried to explain that she needed ID to prove that they were seeing the right patient and to be able to bill the insurance. The man and his wife got so upset and ended up insisting on paying cash so they didn’t have to show ID. They got so loud that everyone in the waiting room was watching to see what happened next. After several concerns about how the office would misuse his ID information, he finally signed some type of waiver and was seen after paying in cash. Just makes you wonder who he was trying to be or who he was hiding from??

Doctor's officeDr. Nofsinger was very thorough and listened through all of my symptoms. But I didn’t get very far before she stopped me to acknowledge how stuffy and congested my voice sounded. She told me that my allergies are probably much worse than I realize yet because I am so accustomed to it, and that I will have a huge difference one I begin treatment. She started writing me prescriptions like crazy. I think I got as many prescriptions today as I have in my life until now.  They were all very inexpensive to fill… Yay!

The scary part of the appointment was when she used a needle-type tool with a camera on the end to make sure there wasn’t anything more than gunk problems causing my breathing blockages.  I didn’t know Jesse was taking pictures of me with the needle all the way up my nose.  That picture was a little too embarrassing, so instead the picture is of me trying to stay calm when she first picked up the needle thing.  It really wasn’t that bad at all, but I still feel like the numbing stuff hasn’t fully worn off.

For the next week I’m on Cipro (antibiotic) to get rid of all of the gunk in my nose and chest, and Prednisone to take away the allergy symptoms so I can get to feeling better fast.  She also gave me two types of inhalers for when my breathing is really irritated – one is a rescue inhaler and the other is a daily control steroid inhaler like Jesse takes.  And there are more scripts waiting for me on Monday!  I have to schedule to go for allergy testing to see if there is something specific bothering me.  Long-term treatment will probably include allergy shots for a couple of years.