Originally posted on Cystic Fibrosis News Today.
If I were a superhero, my Achilles’ heel would be water. Before I illustrate, I must explain how anti-rejection medications work.
A healthy immune system is trained to attack foreign bodies such as viruses because they’re often harmful. When I received my double-lung transplant in June 2019 due to end-stage cystic fibrosis, my immune system viewed my new lungs as a threat. The pills I take now, tacrolimus and CellCept (mycophenolate mofetil), prevent my body’s defenses from attacking or “rejecting” the lungs.
Additionally, patients like me must follow several golden rules.
Bottled or canned beverages only
All kinds of bacteria live in pipes and fountains, and because my white blood cells are forced to stand down, I must avoid these germs. That means no tap water, no fountain drinks, and no ice (unless it’s made with bottled water).
I bring bottled water and soda wherever I go. You’d be surprised how many restaurants have no bottled or canned drinks to offer! Mom purchased a water service that provides a water cooler. I try to fill my reusable gallon water jug in place of plastic bottles.
Hydrate
Cystic fibrosis patients tend to sweat more than most people. A faulty gene affects the transportation of chloride and water in and out of cells and leads to a buildup of mucus around major organs, often leaving patients dehydrated. Dehydration can cause salt depletion, so I’m diligent with my water gallon challenge.
In 2018, the summer before my double-lung transplant, I fainted on the beach in Ocean City, New Jersey. My heart was racing, I felt nauseous, my vision became blurry, my body felt tingly, and boom! Down she went. My sweet boyfriend, now husband, had to dead lift my sweaty body off the beach. My mother-in-law, Julie, ran to grab me something to drink while my mom, Patty, clicked into emergency mode.
I’m sad to report this was not a one-time occurrence. I’m routinely given IV fluid to avoid situations like these, but I’ve learned to invest more time into my hydration since my surgery.
From left, Patty, Nicole, and Julie in Ocean City, New Jersey, in 2018. (Photo by Julie Kohr)
No hot tubs, saunas, or dirty pools
“And no swimming in pools with dirty diapers!” a transplant nurse once reminded me.
Some germs thrive in heat, so a lot of bacteria will build up in hot tubs and saunas if they’re not cleaned properly. I’d argue that no one should lounge in moldy or poopy water. Saunas can also cause heart problems and dehydration for those with preexisting conditions.
Shower safety
I fainted in the shower a few times back in the day due to a lack of energy and dehydration. Showering was always a chore, something that drained my energy for several hours. Still, cleanliness is important for long-term health, so Mom would encourage me to bathe frequently.
I was also very unsteady pre-transplant. Mom purchased a shower stool for me in 2018. It was a life-changer. Showers still exhaust me, but my shower stool has collected dust in the closet for over a year now, thanks to my newfound steadiness. Clumsy or not, I would encourage everyone to be careful in the shower because we are all a potential fall risk.
All of the golden rules are important, even for wannabe superheroes like me. In the song “Tango: Maureen” from the Pulitzer Prize-winning Broadway musical “Rent,” a quirky protester’s exes exchange relationship horror stories. I’ve had my share of trauma with water. Our relationship has always been complicated, but now I live five minutes away from the Neuse River in North Carolina, and look out over a beautiful, sailboat-filled skyline. I like to think water is no longer my Achilles’ heel, and we’re involved in more of a fluid dance. Let’s call it the “Tango: Chlorine.”