6 Tips for Staying Organized With CF

Life with cystic fibrosis is complicated, but there are ways to make things run a bit more smoothly. Here are some of my favorite ways to stay organized with CF.

| 5 min read
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Toni Marie Villines
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In my early 20s, I only had a handful of medications and treatments that made up my daily cystic fibrosis regimen. Now, at 45 -- and a few years past the median predicted survival age -- I take between 15-20 different medications, most of which I have to take daily (or more often).

This means that I have to manage a daily medication schedule, maintain an inventory so I know when to refill each medication, manage five different companies because my insurance requires that I get certain medications from certain pharmacies and then make sure that my doctor(s) send each prescription to the correct one.

Life with CF -- or any chronic illness -- is complicated, but you can make things run a bit more smoothly by staying organized. Here are some of the ways that I keep organized with CF.

The Box

I keep a box of my “everyday medications” with me. It's just a plastic box with a lid that I purchased at Target, but it is my lifeline.

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It's big enough to keep all of my basic medications, including spare diabetes supplies. The box is also easy to grab should I have to leave the house quickly in an emergency.

The Cabinet

I get many of my medications from a mail order pharmacy. They ship 3-month supplies of nearly everything and I receive medications as my insurance requires.

As a result, I acquire stock that needs storage space until it's time for me to use it.

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Enter the mother of all medicine cabinets! As you can tell, I just received a big shipment from my mail order pharmacy. If you look closely, you will see that I labeled certain shelves and corners. (Yes, I have a label maker and yes, I use it!) I also keep other medical supplies like my blood pressure machine, hand-held spirometer and a few other things that I might need.

The List

It's important to keep a current list of all the medications you take to keep track of what needs refilling or to have on you should go into a hospital or ER or see a new doctor.

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I created a spreadsheet of all my current medications and update it every few weeks. If you're interested, I can email a copy of this excel spreadsheet to you. You'll find my email address in my bio below!

Diabetes Kit

Another thing I need to organize is my diabetes kit. It's portable and comes with me everywhere.

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In it, I carry my glucose monitor, lancet device, extra lancets, two insulin pens, extra pen needle tops, alcohol wipes and some caramel candies for quick sugar.

My “Mini Meds” Kit

When you have more than a few medications, you realize how tough it is to keep them all with you. For example, I have to take enzymes every time I eat and have several other medications that can cause some real discomfort if I miss them. I never know if I'll be out of the house when I need my next dose, so I must have them with me at all times.

I found these cute tins in the dollar aisle at Target and realized that they are perfect little containers to carry a few medications with me in my purse.

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I bought some small medication baggies (at CVS pharmacy and other pharmacies) and counted out a few doses' worth of each medication should I get stuck somewhere. I then took the extra prescription label from each bottle so that I had all important information (i.e., brand and generic names, prescribing doctor and phone number, pharmacy name and phone number, the dose and frequency) with me.

The Cart

This IKEA cart seems to have been created just for vests; I know of at least a dozen other people with CF who have this cart. It's heavy, it's metal and it fits my compressor, vest and hose perfectly.

As you can see in the picture, I find that the rocking chair is an ideal chair to sit in while using my vest because the hard back forces me to sit up straight. Doing the vest for many hours a day can be taxing on the back and muscles, so keeping a strong posture certainly helps.

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Lately, however, I have been too sick to go up the stairs so frequently. So, we moved the cart downstairs to the living room and reorganized it to not only hold the vest, but also my medicine box and a few other things I needed. 

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 We also bought a magnetic white board where I can write reminders to myself.

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I'd love to hear what you do to keep organized.

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Adult Care
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Toni was diagnosed with cystic fibrosis in 1972 at the age of one. She earned a bachelor's degree in English with a concentration in journalism from Central Connecticut State University, and worked in the newspaper, advertising and dot-com industries until she retired from the workplace at the age of 30 to focus on her health. Toni began volunteering for the CF Foundation in high school and college, and has been involved in the online CF community for more than 20 years. She runs a private online support group for women with CF and continues to raise funds for the Foundation through her Great Strides team, Toni's Titans, which has cumulatively raised over $10,000. Toni and her husband Ken live with their two cats, Milo and Molly, in central Connecticut. Follow Toni on TheraPink or email her at therapink.com@gmail.com.

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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.