Traveling With Some Extra Baggage

Last updated: September 2022

Most people love vacations. It’s an awesome break from the pressures of everyday life and a beautiful experience when getting to see new places. All vacations come with some stress too. Planning. Packing. Expense.

When you’re bringing cystic fibrosis (CF) along on your vacation though there’s even more to worry about. Extra medical supplies. Availability of emergency care. Exposure to illness.

Life goals!

Majority of my life I tried my best to not let CF limit me. Of course, it always has its burdens that get in the way, but overall, I’ve succeeded at living an enjoyable life. Vacations are no different. In my earlier years vacations had other reasons for being less often, mostly young kids, more frequent sickness, and limited funds.

As I’ve gotten older though, and surpassed the original odds, I’ve began to prioritize living my life to the fullest. As a CF patient you never know what the future will bring; even more reason to make the most of every day. I’ve had kids I didn’t know if I’d be able to have and I’ve found a job I absolutely love. Now, it's time to pursue my bucket list of adventures.

Going to a live comedy show got knocked off my bucket list a few years ago. I’ve wanted to become a published author and managed that too. In the last few years my desire to travel has topped the bucket list and so now, I made it a priority to do so. Adding Trikafta to my collection of medications certainly helped to make travel more of a luxury I can manage. It's my life in general a lot more opportunities.

Let the preparations begin!

I started planning a trip for this summer months ago. First, a small little weekend trip to the beach with my teenage sons. Then, the big trip I’ve been wanting to go on for years. As a teenager I was obsessed with the movie Titanic. I collected everything and soaked up all the knowledge I could find about the ship, the passengers, the movie, and every tidbit in between. So, when I discovered there’s a titanic Museum in Pigeon Forge, TN … I geeked out quite a bit.

The beach trip came first, at the end of July. My kids teased me that I overpacked on the snacks, but we came home with none, so I guess I got it right. Besides, as a CF patient, over-packing is an asset. You can’t know what might happen, so I’ve spent my life trying to be over prepared. A full bag consisted solely of my medical supplies. The travel nebulizer. The medications. Insulin.

Thankfully everything went smoothly, and it was an amazing trip. It’s been a difficult few years for the kids and I, so getting to watch them utterly content lifted a huge weight off my shoulders. I sat on my balcony, with a beautiful view, and listened to the sounds of my boys laughing. The salty beach air was great for helping clear out my lungs a bit and the beautiful scenery added the touch of peace I’d really been needing. I came home refreshed and ready to take on the world.

Then came the cough!

The next day I was sick. At first it was just my sinuses. Then the cough reared its ugly head. Since I began Trikafta in 2019 my flair ups have dramatically decreased. However, I guess my body had other plans. Thankfully my CF team fit me in right away and got me started on an antibiotic to help clear me up right in time for vacation number two. Tennessee, here we come!

My son was looking forward to driving the few hours' drive and my best friend, Linda, and her kids planned to meet us at the hotel. The hotel by the way? It’s a giant water park too! It had a bowling alley, mini golf area, ropes course, candy shop, coffee shop, and giant arcade. Honestly, I don’t know who was more excited – me or the kids.

The drive to Tennessee went fairly well, but as we got closer to our destination my ears started popping like crazy. I could feel the change in altitude. Check in had a few hiccups, mainly being placed at the farthest part of the hotel from the activities, but I just viewed it as some extra exercise. Even on vacation I got that cardio in. The first two days went great. We visited the arcade and the water park. The boys and I ordered in some dinner and relaxed the rest of the evening.

On day three, I struggled to sleep, and my chest was feeling tight. I woke up a bit cranky and just did not feel too well. Still, I made the best of the day and paused through the discomfort. We climbed up staircase after staircase and I laughed hysterically as my sons, and I plummeted down each water slide. I left the really scary ones to my kids to conquer.

Best day ever!

On the fourth day, I wasn't feeling much better, so I was glad we had a calmer day scheduled. The day Linda and I have been waiting for. It was Linda's birthday and to begin the festivities we spent our day at the Titanic museum. It was everything we'd hoped for and more. The kids all had a blast and Linda and I got to enjoy every interesting fact and fascinating artifact. There were a lot of interactive activities we all got to enjoy then ended the trip at an amazing gift shop. Well, actually we ended the adventure with about 400 pictures. Sadly, no, we didn't get to reenact the famous Jack and Rose classic on the bow of the boat. Everything else was perfect though!

We finished up the perfect day with a birthday dinner and some cake that evening. It was probably one of the best days of my life. I made memories I'll treasure for the rest of my life.

Knowing when to take a breather

Unfortunately, the next day I woke up and I felt the sickness creeping in. Well, I wasn't sure if I was actually sick or just exhausted. I definitely knew I was worn out. Thankfully my kids are older, and a good amount of entertainment is contained inside the hotel. I was able to spend a few hours resting up and my kids were still able to have fun on their own. I managed to throw in an extra treatment while they played downstairs.

Then, the group of us packed up and headed to a bigger waterpark down the road. I took it easy this time and spent my time relaxing on the lazy river. Majority of the day was spent relaxing and watching the kids enjoy themselves.  Watching my boys compete on a water obstacle course was definitely a highlight. All in all, we had a great final day of vacation.  When we got back to our room, we packed up our bags and prepared for our departure the next morning. This also went very smoothly. The three of us were on the road by 10am and were home by late afternoon.

It took me a few days to part with the exhaustion. I knew my body well enough to know I needed to really rest. So, I did. I took extra precautions to not overexert myself and added in an extra treatment or two. I know from experience; illness creeps up when I'm exhausted. So, I spent the next few days focusing on just that.

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