Ask the Advocates: Staying Hydrated
Living with cystic fibrosis (CF), you learn how important hydration is and the best ways to get your body the necessary fluids.
We asked our patient leaders to share their favorite hydration tips. These tips are especially useful for the summer months ahead, where it can be even more difficult to stay hydrated. They made it clear that hydration has its hands in everything when it comes to CF, from IVs, to mucus production, to blood sugar, and more.
Here's what they had to share:
Gatorade and iced tea
Response from Cheriz K
I mean… my main drink of choice is ALWAYS Gatorade! Lemon lime Gatorade to be exact. I drink it ALL the time, I may be addicted. Ha, and I’m okay with that. My body craves the salt, I need to stay hydrated, and I love it. While water is always the healthier choice, this is much better for me than other alternatives out there. I avoid caffeine, only 1-2 caffeinated drinks a month at most. I do drink non-caffeinated tea, oat milk, 100% juice, but usually 99% of the time it is Gatorade.
My go-to snacks are trail mix, avocados, and fresh fruit. I’m all about the almonds & walnuts. But, I don’t snack as much (because since taking Trikafta, I no longer struggle to keep energy up & I’m at a good weight/BMI). So I really focus more on liquid hydration through Gatorade.
Response from Mikayla
My go to drinks to stay hydrated are gatorade, lemonade and good old fashioned water. I love anything that tastes sweet like juice with a little tang. I crave that when I feel dehydrated so I try to remind myself that water will do the trick a lot of the time. People will say it’s nuts but licking salt is my favorite. I crave salt all day long and can just shake some onto my finger and pop it in my mouth! In public eating will be just a salty bag of chips, but that’s just boring.
Response from Moriah
I am not much of a water drinker, so my go-to drinks to stay hydrated are decaf iced tea and chocolate milk. As far as hydrating foods, I love watermelon in the summer, and brothy soups in the cold months.
Fruits and vegetables
Response from Jennifer
I personally love fruit/vegetables and eat them almost every day. I also drink flavored water (such as propel) every day. When I’m feeling particularly parched, I try to increase how much water I’m drinking and will usually snack on some grapes and tangerines throughout the day. They don’t help much for weight gain, but they do help keep me hydrated.
Response from Marieliz
I love water! I drink it all day, every day! Water is definitely my go to beverage, I really don’t drink much else, I have a juice here and there but that’s it and in terms of food, I will have oranges or apples because they are delicious, otherwise I am pretty simplistic on my ice-cold water.
Response from Kenny
I have always been adept at keeping hydrated. Being involved in physically active sports from a young age, along with the frequent visits to care teams, helped to establish the importance of drinking fluids to replenish what I lose through the day. When I was young, I was much more active and able to drink sports drinks in addition to water without too much worry.
With my initial abnormal glucose tolerance test, one of the first things to go was sugary drinks, eventually getting to the point today, at 34, where now I only drink water throughout most days, along with some chocolate milk for some fat and protein. Plus the occasional alcoholic beverage socially, but that also includes some water with it to help reduce those mid-thirties hangovers.
Water has always had a noticeably positive effect on my mucus production, so I use that as motivation and judgment of when and how much I need to be drinking. I haven’t found any foods that especially help fluid retention or hydration, so for me, water is the primary method for staying hydrated and keeping different bodily functions working as they should.
Response from Ella
I try to drink a lot of water! I try to avoid sugary drinks to keep blood sugar in check and they don’t quench my thirst anyway. Other than that, in the summertime, I like fresh squeezed limeade with a slice of orange for sweetness and garnishing.
Alternative hydration methods
Response from Janeil
Last year while I was pregnant and on IVs, I learned about this powder hydration multiplier called LiquidIV. You simply add it to water and it helps hydrate and restore electrolytes quickly as if you are drinking larger amounts of water than you actually consume. I swear this is a game changer! I always get really dehydrated on IVs even with doing IV fluids through my port line. Dehydration while on IVs can be especially dangerous to your kidneys and sometimes you have to stop medications early due to it. That’s why I like LiquidIV because it’s really accessible and gets the job done while keeping my body going through treatment.
Response from Nicole D
My CF care team always asks me if I am staying hydrated at my appointments and I have typically always just agreed without giving it much thought. I have read about benefits of staying hydrated and the importance but beyond that, I would only focus on hydration when I was in training mode – certainly when I trained for a full marathon, several half marathons and other running events.
I used to cramp up pretty badly when I would sweat (my skin would be covered in salt crystals!) which had taught me that I needed to really hydrate well in advance and often throughout. Fast forward to post-Trikafta and I am so blessed that Trikafta has had such a positive impact on my body that I haven’t experienced the muscle cramping from dehydration nearly as much.
I discovered NUUN tablets years ago to add to my water to replenish electrolytes which as been very beneficial. I actually have a subscription with Amazon Prime for NUUN tablets so that I would always have them available when I needed them. I have gotten into the habit of dropping in a NUUN tablet in water bottle to drink before/during a workout to ensure I am always staying hydrated. They say if you are thirsty, you are already getting dehydrated!
I have never really focused on a particular food for hydration as I always read food in general helps, but have always focused on the liquid intake instead.
About a year ago I started a fitness program that required participants to drink a gallon of water a day (that’s 128 ounces!). That seems like a lot, right? (Not to mention frequent trips to the bathroom!) And for someone of my size (5’1”) it almost seems TOO much. I committed to it and quickly learned that my body adjusted to consume 1 gallon+ water a day and I really felt the benefits. I no longer suffered from headaches, my skin was well hydrated and somehow my breathing and sinuses even feel a bit better (if that’s even possible, as I am fortunate to be on Trikafta which has changed the game for me!).
I have a gallon size water bottle with a straw that helps with the consumption and holds me accountable!
What are your favorite ways to stay hydrated? Share with us in the comments below.
Have you had a flare on Trikafta?
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