Organizing all the CF “stuff”

Like many of our readers, I have an abundance of CF stuff.  Between IV supplies, inhaled medications, tubing for nebulizers, nebulizers for home and travel, neb cups, oral medications and diabetic supplies I feel like I live in a hospital.  And since organizing all of the “junk” we have can be overwhelming I decided to share what I do.  This does not mean that I think my system is great, perfect or should be replicated at all.  This is just to give readers an idea of what others do, and allow them to pick and choose what they think may work for them, if they need ideas.  dsc_0038 Here is a picture of my rolling cart.  It holds my enzymes, hormone patches and diabetic testing supplies in the top drawer.  The second drawer holds all my port flushing supplies like saline, heparin and needles.  The third drawer is a “junk” drawer and holds some non-CF stuff as well as things like my accapella, peak flow meter and some things I like to bring with me when I am hospitalized.  You will see next to the cart a basket of oral medications.  I keep all my non-enzyme pills in here for easy access to fill my weekly pill sorter on Saturdays.  On the top of the cart is my nebulizer with basket of neb cups and my open box of Duoneb.

dsc_0037Here is a picture of my desk and vest area.  The vest is under my desk hidden away and makes a great foot stool when not in use.  The tubes can be annoying when they flop out so I am still looking for a better way to store the vest.  Space is limited so this is about all the room I have right now.  You may also notice the Duoneb box on the top of the desk.  This is my “trash” box for the vials.  And next to it is of course some enzymes and my daily sugar log.  (the ear drops are my dog’s!) Under the desk overhang I have my daily pill sorter and my meter to check my sugars.  Below that in the little side section I have my sharps box and used neb cup container.

dsc_0039Here is an overall picture of the area.  I don’t know how well you can see but above my printer I have a white board.  On the whiteboard I list everything I need to flush my port and how many of each I have.  I also have the date of my last flushing so I can’t forget.  This way when the IV company calls me I can say I need this and this but I am OK in this and this.

dsc_0033And this is my medical drawer in one of our bureaus.  I have the rest of my IV supplies in here like dressing kits and alcohol wipes.  Plus I keep my Duoneb and saline boxes in here.  Also some things like tape and heparin that I use for IV antibiotics and not for flushings (I should probably check the expiration date on those opps!).

As you can see the amount of stuff I have is actually fairly light compared to some.  But I don’t like to keep too much stock.  And I rarely go on home IVs as I prefer to do my clean-outs inpatient so my IV supplies are limited to port flushings.  For me what I have works.  And there are still the random enzyme bottles around the house and miscellaneous bottles of things here and there.

I hope this posts helps anyone who is struggling to find away to deal with the necessary clutter that accompanies CF!

6 thoughts on “Organizing all the CF “stuff””

  1. Thanks so much for sharing this! My 14yo has just started doing his own meds so I’m trying to find a good system for him.

    1. You are welcome Sharon! I hope you both can find a system that works for you. I am 35 and it has taken years to find one that works for me. And of course every time I move things shift slightly. Best of luck to your son and you!!! 🙂

  2. This is AWESOME! Thanks for sharing! We’re looking for new ways to organize all the stuff that goes with CF for my 16 year old son. I love the idea of the drawers as well as the little box for the trash of empty vials, etc. Right now we’re all over the place, some things here, some things there and need to consolidate. Thanks for the good ideas.

    1. Glad to hear it Christine! It really does help having most everything in one central location. It makes refills so much easier 🙂

  3. I do things very similar with placing supplies and medications in a 3-drawer rolling cart in my closet, in the bottom of dresser drawers, and have a spot on the kitchen counter to keep enzymes and a pail with my nebulizer cups so they are easily accessible multiple times a day. A specific spot in the door of my fridge keeps my refrigerated medications and a cupboard drawer keeps the rest of my nebulized meds and insulin pump supplies. In my purse I keep a smaller bottle of enzymes, an albuterol inhaler, glucose tabs, and diabetic meter, along with a double pack of epi-pens due to my husband’s bee allergy, but would also benefit if I was to have an anaphylactic reaction from medication which happened to me once. One suggestion that I would add to this organizing post that works well for me and would solve many patients problems of how to keep their vest hoses in check is by building a cabinet almost like an end table. My grandpa is a carpenter and made one for me when I went to college and still have 9 years later. It houses my vest machine, hoses, and nebulizer. It consists of three sides, with the front opening like French doors, leaving the back open for air flow so the machines don’t overheat. The top works well to set a box of Kleenex on, my laptop, my neb cups, and a lamp. The bottom has an additional “pull-out” drawer so when I do my treatments I can open the front “French” drawers by the handles and slide the drawer out for easier hook up. It works very well for me and helps with keeping things organized so hoses aren’t just floating around. For those that don’t want things always visible, it hides everything out of sight. It’s approximately 2 feet wide, 2.5 feet long, and 2.5 feet tall. I’m a patient that is 100% compliant with my daily CF treatments and medications and feel that’s a crucial part in living with a life-threatening illness. I look at everything I have to do as second nature and since I’ve never known my life any other way it’s easier to stick with those routines. Another bonus is each year or so when it comes time for another round of IV meds via a PICC line, my doctor is much more likely to let me come home to do my own outpatient home care knowing that I will continue to follow his orders and take time to do the extra medications with the PICC. I have also found that setting multiple alarms on my phone for IV start and end times helps so I don’t forget, or if it’s in the middle of the night or early morning I wake up to either start or stop an infusion. I hope this post helps give others ideas of how to organize their CF “stuff” as well as highlight how important it is for everything to have a specific place in helping to keep medications and supplies in order. It definitely takes time to adjust to new routines, but is well worth it in the long run once those routines are established and followed. Hope this posts helps someone else, somewhere find another way to manage their CF “stuff” in a better way. Thanks for reading my suggestions!

    1. great suggestions thank you Jess!
      I have heard of people getting a cabinet built for their vest. I wish I had the room for it. My brother would make me one but I need space. Someday!!!

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