Adventures in camping outdoors with a child who has cystic fibrosis
I've learned to make preparations while also expecting the unexpected
As the dust swirled nearby, I adjusted my daughter’s mask. We were in the middle of nowhere, off-roading to a mining ghost town with no cell service. The scenery was gorgeous, yet I began to second guess my decision. Was I putting her at risk for a day of adventure? What would happen if an emergency happened so far from help?
The great outdoors can pose many risks for a person with cystic fibrosis (CF). Pseudomonas aeruginosa, for instance, is a common and harmful bacteria for those living with the disease. It’s commonly found in water and soil, two large features of camping.
Yet despite these risks, the past two summers our family has spent seven weeks — three last year, four this year — traveling in a camper across Arizona, Utah, Colorado, and California. Second guessing myself during these trips has become the norm for me. But I try to make our camping trips as memorable and safe as possible.
Prepare for the expected care routine
When we travel, I start preparing weeks before by checking our stock of medications. This year, I had to request a vacation override from our insurance to cover a two-month supply. That process alone took several days to wade through.
Next up is list making. Beyond the medications, we also need other supplies to care for Claire, our daughter with CF, and they’re not readily available in many destinations. Currently, most of her prescriptions are filled through a delivery speciality pharmacy, which I don’t have access to while traveling. For that reason, I have to check and recheck that we have ample supplies for all of our daughter’s care on the road.
With camping, however, I also have to keep supplies to a minimum. Space is limited. I have to stay organized in a small space with four people. It’s important that I make sure I check what’s absolutely necessary and leave the ancillary items. I sometimes miss the comforts of breathing treatments at home. But while camping, we have to stick to the bare necessities.
Do your research
Our family loves to do special activities while camping, including fishing, horseback riding, and hiking. Most of these involve some level of risk for a person with cystic fibrosis, given the environmental factors. As a result, I have to do research to see if Claire can participate and how I can minimize risk. If she can’t participate, I have decide whether we forgo it as a family or separate so some can enjoy the activity. It can be a reality check to make these choices, especially since camping is supposed to be carefree.
Last year, my kids were begging me to go to a hot springs pool they saw last summer. I’d told them absolutely not as we drove by, picturing all the possible bacteria floating in its waters. I was completely unprepared and later felt bad about how rigid I was.
For this year’s trip, which is still underway, I knew we’d again be staying near the hot springs pool, so I called the operators ahead of our visit and asked questions about their cleaning process and chlorination system. After that research, I felt much better making an informed decision. As a parent, I also felt better giving my children a more conscious answer. Anticipating activities helps, but with camping, we always have to expect the unexpected.
When surprises happen
I learned that lesson this trip when Claire spiked a high fever while we were in a rural location. I knew a CF clinic was five hours away, but I hadn’t done any research on the closest hospitals or checked updated road conditions. At 2 a.m., I found myself searching for accessible emergency room options with a fever-ridden child. It was terrifying, but it taught me that no one can plan for every scenario.
Part of camping is being ready to adapt in the face of unexpected bumps in the road. Luckily, being a cystic fibrosis parent grants you a steep learning curve of risk assessment, researching, and resourcing quickly. While it’s scary camping with a child who has CF, Claire is my outdoor girl. Seeing her joy in nature helps me push through the anxieties I have.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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