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Traveling with CF > Pre-trip Planning Tips for our European Adventure

2 Jul 2017

Pre Trip Planning Tips for our European Adventure: England and Paris as a Solo Mom of Two Kids with CF

By Lisa C. Greene

We are back home from an amazing trip to England and France. No matter how far or wide we go, it's true that "there's no place like home." Since I didn't have much time to post while we were traveling, I am going to try to post pictures and travel notes about our journey for our friends and family over the next couple of weeks. I am also going to share how I planned, prepared and executed our trip around the complexities of having two kids with cystic fibrosis (CF). I hope my writings may inspire some of you to step out and see the world despite limitations and challenges you may have. It's worth it!

Pre travel planning:

This was more than just a vacation. The amazing Yasmin - CF Nurse from Conventry England CF Center- contacted me about maybe doing a workshop there someday for the families and staff of their clinic. This was over a year before we actually made it happen so we had plenty of time for planning! Jacob would be graduating from high school so it seemed the perfect "grad gift" for him and a time for us to be together as a family before he leaves for college.

So we picked a date and went from there. Having been in the same area of England- Warwick- about 17 years before with Carl, I was somewhat familiar with where we would be and what that would entail. That sure helped! Then with some research online, travel books and attending a couple of Rick Steve's travel classes (he is local to me), I had the details worked out.

Then of course there was the "CF Factor". Pumps and plugs work very differently there so I needed to be sure our nebulizers were dual voltage. I think they are all made that way now but we checked the fine print to be sure. The plug into the wall is different so we brought extra plug converters since they are cheaper here. We brought disposable nebulizer cups so we weren't worried about sterilizing nebs every day. We talked with our CF Team about our trip and they were very supportive, talking with the kids about infection control, good health practices and a refresher of alternative CPT methods. Right before we left, both kids had a CF clinic visit to get cleared for travel.

And then there was the "worried Mom" factor. This is not something to be ignored and very real. The bugs can be different on different continents including casual bugs which cause casual colds and also more concerning bugs like bacteria or even superbugs that can cause problems for my kids. Our immune systems aren't used to allergens and pathogens in other countries so we may be more prone to getting sick. Luckily, this was Europe so I wasn't too concerned but other places that may not be as clean might not be a good choice for travel with my kids.  

I felt comforted that there was a CF Center close by that would be very supportive if we needed help. We brought antibiotics with us in case we needed them and I carefully double checked the kids' meds while packing (despite their protests about me looking over their shoulders). The kids used alternative airway clearance methods (not the vest) like acappella and aerobika plus lots of walking. We packed a few extra days of critical meds like pancreatic enzymes and Orkambi plus some extra hypertonic saline for airway clearance in the event of travel delays.

So everything was well planned and prepared for. However, as the kids can tell you, I was still a bit anxious throughout the trip. Traveling on the plane and subways and buses and being in big crowds exposes the kids to viruses and also to people who may also have CF. So I had to "talk myself down" a few times when the anxiety and doubt (is this really a good idea?) came up in me. I used my good stand-by coping skills like working through the pros and cons of being over-protective (usually not a good idea from a mental health standpoint), staying in the present and not catastrophizing about the future, focusing on living life well with passion and making quality of life matter as much as quantity of life/ years, and being prudent but not paranoid.  Being well prepared also helped me relax and feel like we were doing the right thing. As the trip went on, I felt more relaxed and confident that things would be okay. But it was still a lot of responsibility on my shoulders as a solo parent in a foreign country with two kids with CF. I felt the weight of that and missed Carl in many ways including being my travel partner. I had many good memories of times with him in the same places which was bittersweet.

I was also a little concerned about the terrorist activity in recent weeks before we left. Not enough to stop us but it was in the back of my mind when we were in big crowds and vulnerable street situations. England and France are really stepping up to deal with this, although probably not fast enough as we've seen recently. But we saw many barricades being erected on sidewalks and there were armed police visible in many areas. We walked the Westminster Bridge and visited Boughton Market and paid our respects to those lost. The scars are very much still there. It's good to be aware, keep your eyes open and have a plan in the unlikely event something happens. Of course a pint of Guinness in a quaint British pub helps one relax, too, and there were lots of opportunities for that!

On a more practical level, I purchased travel insurance for all of us. I reviewed the fine print very carefully to make sure that 1. It covered preexisting conditions, 2. It included hefty medical insurance coverage in the case of illness or injury abroad (some US medical insurance policies do not cover travel abroad), 3. It covered medical evacuation costs back to the US in the event of a real big problem, 4. It covered all of our non-cancellable expenses (like airfare, pre-booked tours, London and Paris passes, etc.). This is very important and is, in the big picture, fairly inexpensive especially since Kasey is still under 18.

So that was our pre-trip planning process and tips for those who may be considering going abroad with CF. The next posts will be shorter and will share our travel notes and pictures of our great European adventure!  Thanks for reading. :-)