Traveling with Cystic Fibrosis
Not to be a downer, but traveling with CF is a headache. Regardless, I have been incredibly lucky to have gotten to visit so many countries across North America. Salt water is good for us CFers so it would practically be a crime to pass up any vacation by the oceanside.
My favourite part of taking a vacation is the escape of everyday routines. The struggle with CF is that there are really no breaks, no escape, but that doesn’t mean we can’t explore, relax and see the world! Let’s get down to it - tips, problems, stories and joys of traveling with CF.
The number one question is whether or not I am healthy enough to take the trip. Most vacations I took were when I was younger so I did not have too many complications that would prevent me from living a “normal” life or taking a simple vacation. I think the biggest worry for my parents and myself was the fear of something going wrong. But that isn’t much different than life at home. It’s the lack of knowledge of resources, lack of cell service and the unknown of being in another country that can be worrying if I was to need care.
In high school a group of students were taking a trip to the Dominican Republic to build a house for a family. It was my dream to go but we would be placed in the mountains with no cell service and no electricity. This is not an ideal combination for someone who relies on an air compressor for inhalation treatments, 3 hours daily.
I spoke with my CF team and explained how it would be an amazing opportunity. We developed a treatment plan for that week involving puffers and oral medications. I was lucky that my teacher at the time knew the place well and spoke Spanish in case of an emergency. Being as prepared as possible before departing was the best case scenario not just for my health, but mental ease and my family’s sanity.
Go with what you’ve got
The easier vacations are places that have electricity and an easier access to resources. The most common thing I bring is an outlet converter/adapter. It is something that could easily slip the mind but without it, it would be impossible to plug in my air compressor. A quick google search will tell you which converter you need, otherwise, there are universal converters too.
One trip I took with my family I was taking Tobramycin, which comes in a vial that can only be accessed by a sharp syringe; which I forgot at home. I tried not to panic and my Dad had a great idea to check the medical centre on site of the resort we were staying at. The doctor didn’t have a syringe but she used pliers to rip the cap open and it actually worked, we were so grateful!
Before I travel there’s usually a stumbling block when checking my bags for flights. I’m not bringing anything illegal, but I can see how a single person carrying hundreds of pills, vials, syringes and inhalation masks could look suspicious. I’m just chronically ill, no funny business here. So I have some solutions that make this process run a little smoother.
Number one, bringing any supporting documentation with me that says what I have, why I have it and why I won’t be getting on the plane without it. I usually have my doctor sign it, along with their contact information. I also carry a CF brochure in case people aren’t familiar with it, and if I’m going to a country where they don’t speak English I bring photos of myself using my treatment equipment to show how it is used. Understanding that the staff at airports are just doing their job to keep everyone safe can make the entire process easier for everyone as well.
Blister packs have become my newest obsession when traveling. Essentially I take all my pills to the pharmacist, and he puts them all in a custom blister pack with prescription labels. However, I just had too many pills to fit, so I opted for excluding enzymes from the pack. My tip if you use this is get a couple extra days.
I have unfortunately learned the hard way that flights or trains get canceled, postponed and then I am left panicked with no medication. I recommend researching beforehand the company you are flying with. Some planes only allow you to board with medication in its original, labeled packaging. In my experience this varies with carry-on versus checked baggage.
Regardless, I always bring my medications and treatments in a carry-on in case I need immediate access to something. Additionally, I do not want to risk losing this luggage. I will guard this suitcase if my life depends on it, actually, it kind of does. Safe travels my friends!
Which of the following help you feel cozy? (select all that apply)