Making Cystic Fibrosis a Little Easier

I married a neat-freak. I’ve grown accustomed to it, and appreciate it immensely now as a vast improvement over my former way of life. That’s not to say that Beautiful and I haven’t had our fair share of verbal disagreements over where to put my medical supplies to make it easier for me. I’m going to come completely clean with this admission:

If it is out of sight, it is literally out of my mind.

I need visual reminders to do my meds, as I grew up in an environment where a stack or a pile was fine, as long as it was a stack. Over time, my mind grew used to seeing things of non-function in the same place every day. To this day, if I leave something somewhere (say, on the stairs) for more than a day, I will walk by it dozens of times as if it has become a piece of furniture to walk around. That being the case, you can only imagine how hard it is for me to remember something that is put away.

Besides, who wants to drag out your RespirTech inCourage Vest every day? We had to come up with a creative solution. I honestly can’t remember which came first, the vest or the end tables, but I think it was the tables. Maybe Beautiful will fill us in on that in the comments. I posed that if she would let me store it under the end table on the side of the couch I use to work most of the day, I would do it every day. Then came the “discussion” about what to do with the hoses and vest. LOL! It does fit nicely back there, but I have to be careful to not scrape the hoses on the paint on the wall.

We have placed my vitamins nicely on the table where I keep my drink(s) – notice 2 coasters so I can have both a Boost Plus and a chaser at the same time – along with my treasure chest of various pills that don’t go in the daily container. Everything looks nice so far, but it gets even better!

We have a canvas-lined basket on the shelf of the end table that holds both my eFlow and Altera nebulizer bases and my Colistin, water, and needles for my Colistin months. While on the AZLI study drug, I toss my vials in there when they’re done so I can just gather them up in a bag to take back to clinic like I’m supposed to. That ends this week as I get on continuous Cayston… if they ever call me.

On to the refrigerator, because we CFers have a lot of refrigerated meds, too. I used to have more that needed refrigeration, but now I’m down to AZLI/Cayston and my Pulmozyme. We keep a good supply of the Boost Plus in the door, too. I’m up to 4-6 bottles per day now and I’m consistently over 120lbs in the morning now. The first thing Beautiful said to me when she saw me after work today was, “you’re fat!” I love that!

We keep the nebulizer pieces on the counter by the fridge and next to the cabinet that we keep the Albuterol, HyperSal 7%, the saline for the AZLI/Cayston, and extra ZenPep in. We also have keep the extra bottle of Megase in there since it’s a two bottle Rx, but my current bottle is on the counter by the stove so I remember to take a couple of tablespoons when I go to the kitchen to refill my glass.

I didn’t take any photos of it, but in the upstairs linen closest we have a Rubbermaid container (maybe 5 gallons) that holds my extra port dressings, saline flushes, alcohol swabs, band-aids, testosterone supplies, and heparin flushes. We also keep an Epi-pin on the top shelf outside of the box for ultra-fast access if it is ever needed. We did discover that I was growing allergic to cefepime IVs a few years ago, so we keep one on hand now in case anything else develops in a similar way.

Marriage is a lot about compromise, and that includes where to store medication and equipment. Something the average family doesn’t have to think about, but we do. How does your family deal with your medication and equipment? Feel free to post a link to your post if you do one likewise.