Keeping Organized with Cystic Fibrosis

Having Cystic Fibrosis almost demands some level of organization.

When my health changed in my early 20s, I only had a handful of medications. Now, my list runs between 15-20 different medications, many of which I have to take daily (or more often). I have to manage daily doses, maintain an inventory so that I know when to refill medications, and keep it all accessible and organized.

The Box

I keep a box of my “everyday meds” with me. It’s just a plastic box with a lid that we purchased at Target.

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It’s big enough to keep all of my basic medications, including an ear thermometer, Pulse Oximeter (that little thing you put on your fingertip to measure blood oxygen), and spare diabetes supplies. I used a sharpie to write the brand names of the meds on the tops, so that I (or hubby) can quickly grab the right one that I need. In addition, 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 maintenance medications from a mail-order pharmacy. They ship 3-month supplies of nearly everything. I get my other medications – those that I might not take everyday, or those with dosages that might change – from my local pharmacy.

As a result, I need space to keep everything until I need it.

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Enter the mother of all medicine cabinets! It’s actually a bit bare, because I’m waiting for some stuff to come in the mail. If you look closely, you will see that I labeled certain shelves/corners. (Yes, I have a label maker and yes, I use it!!). I also keep other medical stuff like my wrist braces (carpal tunnel syndrome), Blood Pressure machine/cuff, hand-held spirometer, and a few other things that I might need.

The List

It’s also important to keep a current list of all the medications you take, partly to help check your inventory and know what needs refilling, but also to keep with you. If you go into a hospital/ER or see a new doctor, you now have all of your current medications in one place.

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I created a spreadsheet and just update it every few weeks. If you’re interested, I can email a copy of this excel spreadsheet to you. Just comment below!

Diabetes Kit

Another important area I need to stay organized is my Diabetes Kit.
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I have my Glucose Monitor, the lancet device (the pokey thing), extra lancets, 2 Insulin Pens, extra pen needle tops, alcohol wipes, and some quick sugar (a little baggie of jelly beans – each bean is 1 carb, so 15 beans = 15 carbs) should I have hypoglycemia.

My Mini-Meds-Kit

When you have more than a few medications, and they come in single, larger bottles, it’s tough to keep them all with you. For example, I have to take 3-7 Enzyme pills every time I eat, and have several other medications (for stomach motility, my kidneys, GERD/reflux, etc., that if I miss, can cause some real discomfort. So I must have them with me even if I’m just running a few errands – I never know if I’ll be out of the house when I need my next dose.

I found these cute tins in the $ aisle at Target (yes, they are Hello Kitty!), and found that are perfect little containers to carry some meds to keep in my purse.

Cheap, useful and cute (yes, that's Hello Kitty)!

I found some small medication baggies (CVS and other pharmacies), and counted out a few doses’ worth of each maintenance med – basically, a few days’ worth – should I get stuck somewhere.

I then took the extra prescription label from each bottle (mine always come with either a tear-off extra copy of the script, or a small copy folded under the original label), so that I had all important info – the brand name and generic names of the medication, prescribing doctor and phone number, pharmacy name and phone number, the dose, and frequency to be taken.

The Little Corner

Lastly, I have an area of one of our spare rooms designated for using my Vest.

First, is the cart…the cart that Ikea seems to have made 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 Vest compressor, the vest itself, and my hose, perfectly.
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And then, the rocking chair. I find that doing my Vest while sitting up straight, and against a hard surface, feels more effective.img_1989

Through teamwork, hubby and I put these together in part of an afternoon. It’s a cozy little setup, close to a table to keep my water and watch television while Vesting. It’s really difficult to write, read, or play a game – even Sudoku on paper, or Angry Birds on my phone – while the Vest is shaking, so my only options are to watch tv (loudly), listen to music (with headphones), or fall asleep.

I’d love to hear what do you do to keep organized? Share your tips below!

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2 thoughts on “Keeping Organized with Cystic Fibrosis

    • Hello!

      What do you mean “stay on top of everything”? Do you mean being compliant with treatments, meds and airway clearance? Managing your time?

      Before I answer any questions, because you claim to be 13, I want to know the following:

      Do you have your parents’ permission to speak to strangers? You really want to be safe online, especially when it comes to your personal health care. I do not feel comfortable speaking to a person your age without parental involvement/knowledge.

      I would first want to know if you have CF, go to a CF clinic, and are in the US. Otherwise, I may not be able to help.

      Thanks,
      Toni

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