Let's Go Camping (With Trikafta)
A redemptive sense of freedom was gifted to me when I started taking Trikafta. As my lungs cleared away infection, it also made way for the things I couldn’t do weeks before. The hobbies, events, and leisurely activities that I struggled to find time and strength to enjoy were a possibility again. It wasn’t just that I was handed a gift, but my family was, too. They stuck by me when I lacked energy to join them on their adventures. Finally, I was given a chance to come along.
Our first adventure as a family: camping in the woods.
Prior to Trikafta, even the thought of camping was too exhausting for me. When you can barely breathe, the inconvenience of cooking, cleaning, and sleeping outside is just too much--both physically and mentally. The smoke from the campfire, cold and dampness of the woods, and poor sleep quality were hard on my worn-out body. Moreover, the lack of electricity made doing airway clearance a bit more challenging. My priority was taking care of myself and a weekend in the woods would have done more damage than good, unfortunately.
Even though I knew it was for the best, it still hurt to watch them go camping without me. I was missing out on happy memories for our family because of CF. I hated that. Cystic fibrosis convinced me I didn’t really even enjoy camping because it was so hard. I told myself it was for the best--something they could enjoy as father and son. However, the guilt and sadness of CF stealing quality time I should be a part of was tough.
That’s why when my boys wanted to go camping this summer, I was excitedly all-in and ready to trial my new Trikafta body--camping-style!
My cystic fibrosis camping tips
Luckily, we have a boy scout in our midst, and so my husband handles a lot of the packing and camp set-up. Other than keeping our son safe and accounted for, my worry is keeping myself healthy. Here are my CF camping tips that helped make my experience in the great outdoors a success:
- Bring more food and snacks than you think you will need
- Stay hydrated
- Don’t skip airway clearance--go mobile with your Vest and nebulizer
- Start with small, short, and close trips
- Stick to more convenient tent camping versus strenuous backpacking
- Take breaks away from the smoky campfire
- Sleep on a pad or air mattress and stay warm at night
Savoring the adventure
It’s funny how Trikafta has positively impacted me--both in the grand scheme and in the details of life. I never would have thought it had the power to turn an activity that merely exhausted me with the thought into something our family could savor together. Over the course of a few weekend trips, we have eaten countless s’mores (and witnessed a black bear steal a chocolate bar within feet of us), enjoyed the Allegheny’s fall leaves turning beautiful shades of red and yellow, and realized our three-year old really doesn’t sleep well in a tent. I also taught our son how to fish and patiently re-rigged his line about a million times. Patience is a virtue while camping with kids.
Moreover, I know I’ll remember the feeling of freedom being outdoors and the details of my boy’s happy faces during our weekend camping trips for the years to come.
Would you ever consider camping with CF?
Do you enjoy camping, even with cystic fibrosis? What activities has Trikafta helped you to participate in? Share with us below!
Have you (or a loved one) been experiencing any negative side effects from Trikafta?