Navigating water as a PH patient who can’t swim
Growing up with a central catheter made water sports impossible
I grew up in Minnesota, the “Land of 10,000 Lakes.” In fact, my childhood home was located on one of the largest lakes in the state. The summers in our lake town centered on water activities, from tubing behind a boat to deep dives off the dock. Being in the water was a significant part of the local culture.
It was a beautiful place to grow up. But it was also a bit inconvenient for me, given that I couldn’t swim.
This was always a shocking reveal when making new friends. “What do you mean you can’t swim?” It took some explaining to convey that I had a central line in my chest with a pump attached to it, neither of which could get wet. I was diagnosed with pulmonary hypertension (PH) at the age of 4 and placed on IV Flolan (epoprostenol GM) soon after, so swimming was something I had never learned how to do.
My response to this throughout my childhood took two forms. Some years I was resigned to the reality and accepted my spot on the safe and dry sidelines. Other years, I was willing to try anything to overcome this obstacle.
Finding a way to go underwater has always been a common discussion topic among members of the PH community. It’s a barrier we’re all eager to hack. One of the most extreme but effective examples I’ve seen over the years was a sealed, full-body scuba suit.
A tamer option included a combination of an underwater camera case for the medication pump and tape and Saran Wrap to cover the central line as best as possible. This technique only lasted a short while, and the swimmer needed to clean the central line site immediately afterward.
No doctors ever endorsed these options, and it always felt like a small form of rebellion to give them a try. When I was particularly sensitive about the topic in middle school, my mom and I used our friend’s pool to trial some of the methods we’d heard about, with partial success.
While we could rig things so I could be in the water for a short while, the fuss and worry weren’t worth it. After years of being unable to swim, I didn’t enjoy the activity much anyway.
Still, missing out on the social aspects of swimming did cause a lot of grief, especially as I got older and more independent. But by high school, I found a happy medium: I used inner tubes with a seat in the center to be in the water with my siblings and friends. Every once in a while, while at a cabin for a weekend with parents I trusted, I’d go for a very slow and cautious tube ride behind the boat. I found ways to be near the water without missing out altogether.
It’s always exciting to hear about progress in the world of PH. Over the years, there’s been greater success with oral medications and other forms of administering medication that don’t require a central line. I hope for a cure more than anything, but these small changes that can improve the quality of life for patients are always worth the investment.
Note: Pulmonary Hypertension News 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 Pulmonary Hypertension News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.
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