27 Hacks That Can Improve Life With Cystic Fibrosis

We asked patients with cystic fibrosis and their families if they had any “life hacks” to share with the community that have made their lives easier.

Below are some of our favorite responses (names removed for privacy):

Hygiene and sanitation

  • “When I take a shower, I never tilt my head back. Keeps unfiltered water from getting in my nose.”
  • “I use a baby bottle sterilizer for sterilizing and washing nebulizer parts to save time.”
  • “I travel with a microwaveable sterilizer and a cup and alcohol for the metal parts.”

Pancreatic enzymes

  • “My son uses tin mint containers to carry his enzymes around in his pocket. Leaves them everywhere so he always has some stashed away.”
  • “Don’t leave enzymes in a hot car. I’ve done this a few times, turns into one huge gooey clump.”
  • “For primary school students write the number of enzymes required on each snack.”

MORE: Why aspiration is a silent, hidden danger for cystic fibrosis patients

Nutrition

  • “Super high calorie intake drink made from hot cocoa, Carnation Breakfast Essentials and Ovaltine USA mixed together in a big jar once a month. We use a 1/2 cup scoop and make hot chocolate as an amazing meal booster! When we travel we use the empty Ovaltine jug to bring extra with us — pre-mixed and ready for hot water.”
  • “Add full cream milk powder to full cream milk for an extra calorie hit.”

Treatments

  • “Invest in a good nebulizer. It can literally save you hours in just a few weeks.”
  • “I keep an inverter in my car so I can plug in my nebulizer and do treatments on the go. Just don’t do it in front of a cop. It confuses them.”
  • “Treadmill and nebulizing hypertonic saline at the same time. Exercise and some treatment all rolled up in one.”
  • “Use a collapsible three-tier baking rack to air dry your nebulizer handsets. Saves space if you have to put it away after each mass drying session. And a three-tier heavy wire rolling cart for nebulizer, vest, and medicine storage. It stays in my living room.”
  • “If you’re coughing and can’t get that junk out of your throat, try a three-second breath hold. This allows your airways to open up a little more.”

MORE: Seven tips for preventing reflux and aspiration 

Convenience

  • “When I travel, I bring a surge protector with me so I have extra outlets to plug in all my stuff: O2, nebulizer, feed pump, etc.”
  • “I have a fridge in my bedroom. i inject my long-lasting insulin before bed, so this saves walking downstairs each night. Plus, if I have premixed IVs, my morning and evening doses are closer.”
  • “Sign up for a free Dropbox account and download the app to your phone. Then create a word document of all your medications, Rx numbers, and doses. Save it to your dropbox so you can email it to someone at any time from your phone instead of having to write it out when it’s requested.”
  • “Have a back-up stash of all your important meds that you don’t touch in case of any situation you cannot get a script filled. You know, zombie attack. Just make sure you are swapping out use-by dates.”
  • “Hang feeding pumps and bags on the wall so you can put away the IV pole.”
  • “Get a Yeti to use while traveling for cold meds. Way easier than a cooler!”

Hospitalizations

  • “I have a pre-packed hospital bag. Includes razors, all my clothes, extension cords, phone charger, hairbrush, shampoo and body wash, an extra pillowcase, Lysol. Just things that make me comfortable.”
  • “I bought the mini three-quart Instant Pot pressure cooker and brought it to the hospital with me to make pre-packaged food in a vacuum-packed bag. When I’m in the hospital, I store it in the fridge or freezer and just throw the meal in the instant Pot when hungry.”
  • “Bring your own pillow to the hospital. Our hospital reuses their pillows. It freaked me out when the nurse told me! Also make sure your pillowcase isn’t white, otherwise you may lose it to the laundry service!”

Babies and Toddlers

  • “Write ‘1,’ ‘2,’ ‘3,’ etc. on the actual vials of meds if you have a sitter so they don’t confuse the order.”
  • “Teach your kid to swallow pills by putting them at the top tip of a straw and have them drink.”
  • “Mix enzymes in apple sauce or jam for babies.”
  • “Take a bottle nipple with a cap, cut a hole in it, put applesauce and enzymes in the nipple.”

Finances

  • “Talk to your team about any government disability tax credits, disability savings plans and other programs at both the federal and provincial/state levels that you or your child might qualify for. There may be programs that you are unaware of. For those heading off to college or university, there may be scholarships, bursaries, or other forms of financial assistance specifically for those with CF or generally recognized as disabled.”

MORE: A look at the way cystic fibrosis has been depicted in popular media 

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.

3 comments

  1. Eric Hyman says:

    Just want to add my own as a 40-y.o. CFer.
    Enzymes: I take ~15 per meal and generally carry them in the smallest pill bottles I have, it holds enough for a meal & a snack.
    I put a small styrofoam shipping container in my trunk (like what Pulmozyme ships in) and keep a bottle of enzymes in there. If I’m out and forgot to fill my little bottle I can turn to the trunk for backup. It helps if your car gets regular shade and isn’t too hot out for a while. I can’t guarantee they’re in prime condition, but it’s better than none.

    Regarding the Dropbox med list tip, A better option would be Google Sheets or Docs, since you can update the document on your PC or your phone, etc. and it’s always synced.

    Travel:
    I bought a portable refrigerator from Amazon before a recent 2 week road trip along with some ice packs in a cooler in the trunk. During the long stretches of driving it kept my meds (and food) cool. It had a handle so I could carry into my motel rooms and plug it into the wall overnight.

    Meds:
    I swear by mail-order pharmacy on auto-refill. They’re a little ahead of schedule so it creates a back-stock of meds in my pantry. Also I use weekly pill containers, one for morning & one for night to organize them. It makes taking them and keeping track thru the week much easier.

  2. Nicole Pelletier says:

    Generally people with CF have a lot of medical supplies, pills, machines, neb parts, etc. It can be a major eyesore if you like a clean, restful environment. And an aesthetically pleasing environment is VERY important; most people are visual in the way they experience the world (as opposed to kinesthetic or auditory). So….I suggest getting a large duffle (mine is Dianne Von Furstenberg from a thrift shop!) to hold your nebulizer or Frequencer, or whatever. I also shove stuff under the bed. But if you want to be comfortable, relaxed, and healthy in your abode, take some time to make it shine. Then, do that neb and shove it under the bed again! 😉

    • Eric Hyman says:

      Related to tidying up CF stuff per Nicole, I bought a nice looking breadbox on Amazon where I keep all my pill bottles.
      I haven’t figured out a simple tidy approach for vest & compressor. I put them in the closet if I’m having a bunch of people over.

Leave a Comment

Your email address will not be published. Required fields are marked *