Organization: Medical Supplies and Portfolio

Let's talk about organization. Organization is my thing. Not only am I prepared for nearly every situation but I am ridiculously organized (almost to a fault). I suppose it comes with being a perfectionist. Perhaps its my way of trying to regain some control in my life. Regardless, for me, my life runs more smoothly when everything is in order. In fact, a lot of people have told me they wish I could organize their life.

My closet it color coded, my medical supplies are organized by categories, my medical folder (accordion) is organized by specialty, and I keep all of the most important documents (copies at least) in a portfolio that I always have with me. Even my backpack is organized (see post on What's in my "Purse": Chronic Illness Edition). Basically, everything has a place. I may be the only one who understands my system, but seeing as I am responsible for my own health and treatments, that's okay!

I will break this post down into different sections and explain how I organize each area. Keep in mind that it is not possible to break down every little detail but I will do my best to show you my system. Maybe it will help some people understand how my brain works (because this is how I organize my life...not just medical stuff).

Medical Supplies
I have A LOT of medical supplies. This is largely due to the fact that I have a central line and there are a lot of supplies that are needed to not only care for a port-a-cath but for running infusions through my line. I have a system in place that accounts for daily and weekly needs, as well as a storage system for as needed and extra supplies. This also makes it really easy for me to pack for trips as everything is broken down into categories and I can go through my checklist and grab what I need from my different bins.

Extra Supplies and PRN (as needed) Supplies
My bins are organized by category. I have 3 main bins in my room.
1) Port and infusion supplies

Bin contains: extra access kit, swab caps, alcohol swab sticks and skin prep, chlorhexidine wipes, extra dressings, emesis bags, masks, sterile and non-sterile gloves, Purell, hand wipes, alcohol wipes, thermometer 

*Not pictured- bin of extra infusion bags and extra boxes of flushes (saline and heparin)

2) Tubing for infusions
Tubing takes up a lot of room as I have two different types-- dial-a-flow (gravity) tubing and pump tubing. I also change my tubing with each infusion so I go through at least 3 per week.

Dial-a-flow tubing and pump tubing with batteries (for the pump)

3) Allergy and asthma supplies

I have allergic asthma and do daily nebulizer treatments in the Spring and the Fall so I go through this bin quite often. This is also where I store any backup rescue medications (epi-pens, inhalers, nebulizer solutions, benadryl, etc.). If it has to do with breathing or allergies, it goes in this bin!

Bin contains: rescue medications (for nebulizer), tubing and masks (for nebulizer), extra spacers, extra rescue inhalers, extra nasal sprays and other allergy medications and creams, extra epi-pens

How I store my masks (there is another door as well not pictured)

Weekly Supplies
I do weekly infusions (3x/week) and I tend to run my fluids at night while I am in bed. As a result, I have a side table with drawers that has everything I would need to run a bag of fluids. I simply restock these drawers from my extra supplies when I am running low. The drawers typically hold at least 2 weeks worth of infusion supplies.

Tubing, alcohol wipes, flushes (heparin and saline), batteries, tubing caps

Bags of fluid (Lactated Ringer's and Normal Saline)

Daily Supplies
I have various treatments everyday. While I may not be infusing fluids all the time, as long as my port is accessed I have to flush the line daily. I also have daily medications, breathing treatments, and various PRN (as needed) medications that I may take. This is all organized on my bathroom counter.

Daily flushes (saline and heparin), alcohol wipes, swab caps, extra biopatches and injection caps, PRN (as needed) medications, bandaids, Purell, syringes

*On the main floor of our house I have pre-made access kits. I recycle the zip-lock bags my infusion company sends me with monthly deliveries to make these ready-made kits. Because we access my port every Monday (downstairs), it is easier to have them on the same level.

Access bags, extra supplies for the kits

Medical Folder/Accordion 
I have accumulated a lot of files over the years. I have visit summaries from appointments, insurance documents (bills, claims, etc.), discharge summaries from hospitalizations, operative reports, physical therapy summaries, and more imaging discs than I can count.

I have organized the accordion by medical specialty and topic. I have a separate binder of all of my x-rays, MRIs, and CT scans. I ALWAYS ask for copies when I have imaging done so that I don't have to track them down later if another specialist requests to see them.

Imaging binder

I also request operative notes/reports at my first post-op visit so that I always have them on hand as well. In the past, I have had issues with some hospitals and getting records when requested. I have found it less stressful to ask for the records during appointments as they can usually print them right then and there. It saves a lot of time spent on the phone trying to figure out why a specialist never received your records.

Two accordion folders: (left) insurance files; (right) specialists and other medical

Inside look

Medical Portfolio 
My medical portfolio is a collection of documents I have found important to have with me for new patient appointments with specialists.

What I include:

• Complete medical history (combination of everything else on this list)
• Diagnoses
• Surgeries
• Current medications and allergies 
• Anaphylaxis protocol
• Specialist contact information
• Port-a-cath placement radiology report and x-ray disc (many facilities have their own policy on using central lines and almost everyone requires proof that the line is in the correct place)- I update this once a year 
• Neurosurgery operative report 
• Genetics letter confirming diagnosis of EDS 
• Current diagnostic criteria for EDS
• Information sheets on Dysautonomia, POTS, EDS, and Chiari Malformation 
• Recent labs 
• Pad of paper for notes 

 

Information on POTS, Chiari Malformation

EDS diagnostic criteria, information on Dysautonomia

I also have business cards for my specialists so I can give it to other doctors who may want to contact someone else on my health team. I make sure to carry a pen with me as well (both in the binder and in my backpack).

I am constantly updating my portfolio. If I come across something that would be important to have with me, I make copies and add them as necessary.

I am in the process of coming up with a "Treatment Protocol" that my PCP and cardiologist will sign to make it easier for me to seek help in an acute situation. With my complicated history, many facilities simply do not know what to do with me. Having a treatment protocol signed by two members of my healthcare team should help provide some guidance to new providers should I need to seek emergency treatment or care.

When you are complicated, it pays to be organized!