If you are newly diagnosed (you can read about my diagnosis adventure here) and haven’t organized your CVID medical information so that it is easily accessible during an appointment with your doctor(s), you need to as soon as possible!

There are people that prefer to store information digitally on their computers or in an app perhaps, and there are people that prefer paper! I am going to suggest that you set up a system for both. This post will detail how to set up your paper system. (A post on how to set up your digital medical record system is coming!)

Organized your CVID medical information with the free CVID Binder System

Organize Your CVID Medical Information in a Binder

The case for good ole’ paper when it comes to keeping your medical information organized isn’t a hard sell. Trust me. There will be many times when you will need to whip out your one-pager on your CVID diagnosis and symptoms for those doctors that are unknowing.

Or, you might need to discuss your side effects from one of your recent infusions with your doctor at your next appointment. Will you be able to remember them all?

Hopefully, you will receive a printed summary of your doctor’s appointments that you will need to keep somewhere. You get the point, right? (Note: if you don’t receive a summary of some sort, make sure to ask for one.)

So, for the paper version of your CVID medical information, the FREE CVID Binder System is perfect! Binders are easy to structure, you can bring them anywhere and they allow you to create a cheap and functional system that actually works.

You will want to dedicate one binder to you because as a Zebra you will have tons of medical documents to organize and medical history to track! (Yeah! Fun right?!) I would also suggest if you have a child with CVID or another PI dedicating a whole binder to his/her medical information.

Step 1: Complete the Form Below, Download and Print Out the Free CVID Binder System

You will find the following Included in the CVID Binder System:

  • Binder Cover Page
  • Binder Index
  • CVID One-Pager
  • Medications and Allergies List
  • Medical History Form
  • Family Medical History Form
  • Immunizations Record Form
  • Doctor(s) Information Form
  • Doctor Visit Preparation Form
  • Illness Tracker
  • Symptoms/Side Effects Tracker
  • Phone Call Tracking Form
  • Medical Expense/Bill Tracking Form
  • Blank, Year-long Calendar

Step 2: Gather Your Supplies

Binder

This is the cutest Zebra binder that you can also personalize!

However, if you are not in to all the cute stuff these binders will do the job.

Clear Plastic Dividers/Sheet Protectors

Paper Dividers

Labels or a Label Maker (I love mine!)

3 Hole Punch

Pencil Pouch

Sharpies-I suggest the black fine-point kind

Highlighters, Pencils, Pens

Your Family or Personal Calendar

Your print out of the Free CVID Binder Pack

Step 3: Create Your Binder Sections

Label each paper divider on the tab using your Sharpie in the order as listed below. Insert them into your binder.

Section 1: General Information

Section 2: Appointments

Section 3: Trackers

Section 4: Tests/Results

Section 5: Calendar

Section 6: Important Documents

Step 4: Fill Your Binder Sections

Insert the pages you printed out into your binder sections as indicated below:

Binder Cover

Slide the binder cover behind the clear plastic on the front of the binder or slide the binder cover into a clear plastic protective binder page and clip into your binder.

Section 1: General Information

  • CVID One-Pager
  • Medications and Allergies List
  • Medical History Form
  • Family Medical History Form
  • Immunizations Record Form
  • Doctor(s) Information Form

Section 2: Appointments

  • Doctor Visit Preparation Form
  • The official notes your doctor(s) take during your appointments

Section 3: Trackers

  • Illness Tracker
  • Symptoms/Side Effects Tracker
  • Medical Expense/Bill Tracking Form
  • Phone Call Tracking Form

Section 4: Tests/Results

You can obtain copies of all your tests and results a number of ways. Most doctors now have patient portals that you can log onto to see test results. Many labs also allow you to log onto a portal to download your results. Of course, you can also ask your doctor for a copy of any tests or lab results.

Don’t forget to include any radiology reports from X-rays, sonographs, MRIs, etc… You should also keep the actual X-rays and scans in digital form on CD/DVD (I have a few of these from a long time ago!) in the binder pockets, flash drive in the pencil pouch and on your home computer.

Section 5: Calendar

I like to keep a calendar in the binder dedicated only to recording medical information like appointments, upcoming procedures, medicine start dates, side effects and/or symptoms and vaccinations (like the flu vaccine that all Zebras should get each year).

Calendars are also a great way to recall when you’ve been ill. If, for instance, you have been to the ER two times in the past three months with a bronchial infection or pneumonia, you should note it on your calendar for a more visual reference and on the Illness Tracker. Your doctor can use this information if necessary to help him/her in trying to establish if there is a bigger issue that should be looked into further.

Section 6: Important Documents

  • Copies of Birth Certificate
  • Copies of Insurance Card (front & back)
  • For kids-required physical forms to participate in school activities/sports and any doctor’s notes for the school nurse
  • For kids-a copy of the school-issued IEP or 504 form if one was issued

Step 5: Include a Pencil Pouch

A 3-ring binder pencil pouch is a great place to keep pens, highlighters, and pencils, so you always have something to write with. Also, you can throw in doctors’ business cards, appointment cards, flash drives or anything else you may want to keep on hand.

Final Notes Regarding Your CVID Binder

Once you have your CVID Binder put together, of course spend some time filling out each form as completely as possible. Expect it to take a little while to put together all of your CVID medical information. You may have to contact current and/or former doctors to request documents like your immunization records and appointment notes. However, it is worth the effort!

My doctors are always impressed when I am able to provide them with information most patients do not have on-hand during appointments. I am also taken more seriously by my doctors when I pull out my binder, refer to my Doctor Visit Preparation Form and take my own notes!

Please feel free to email me with any questions at susanalynne@cvidiva.com and be on the lookout for my post on how to digitally organize your medical records.

Stay strong my Zebra friends!

ABOUT THE AUTHOR

Though DIVA as she may be, her path to success was not easy and is always evolving. Go here to read about her journey in “Becoming the CVIDiva.” If you want to send Susan Alynne a quick message, then visit her contact page here.