It’s so easy to be overwhelmed when you, or a loved one, are dealing with a serious medical condition. There are so many things to keep track of, including doctor appointments, test schedules and associated results, medications, and more. This would be hard to manage in the best of circumstances, but when you are stressed from a new or chronic health issue, it can seem nearly impossible to keep track of everything. However, keeping your medical information organized is easier than you think.
Don’t Worry – Help is Here!
There are 2 organizing tools that will make a world of difference – a notebook and an accordion file. These easy to use tools can be lifesavers by helping you keep everything organized and together – ready and accessible whenever you need information.
When my son Zach was first diagnosed with a brain tumor, I began the journey taking notes on odd scraps of paper. A few days in, my sister recommended a notebook. What a simple, yet great idea. How had I not thought of this? Overwhelmed by Zach’s dire prognosis, I couldn’t think clearly enough to get a notebook. Thankfully my sister stepped in and saved the day.
Before long, I had a pile of important papers, including clinical trial information and test results. It took me a few weeks before I realized I needed a folder that I could carry with me to keep our documents organized.
Your notebook is essential for staying organized. Keep all necessary information in the notebook to avoid hunting around your house, your office, or your car for little scraps of paper. If you didn’t start a notebook at the beginning of your medical journey, it’s not too late! Try to recreate and record as much as you can from the past, including pasting/taping scraps of paper you used in the past to take notes.
Use your notebook to keep track of records from all medical visits, symptoms and side effects and medications.
Medical Appointment Notes
Use your notebook to take handwritten notes at every doctor’s appointment. This is critical since research shows that 40-80% of medical information provided by healthcare providers is forgotten immediately. The greater the amount of information presented, the lower the proportion that is remembered. To make matters worse, almost 50% of the information that is remembered is remembered incorrectly.
Before each appointment, use your notebook to write down any questions you have, as well as your “story” – this will help you remember everything you want to discuss with your medical team.
At every appointment, make note of:
- Date and location of visit.
- Who was there (list all doctors, nurses, etc.)
- Topics of discussion and suggestions or instructions
- Diagnosis (there may be additional diagnoses as a condition worsens and/or side effects develop)
- Recommendations for future treatments or specialists
- Medicines needed, including prescription and over-the-counter (OTC)
- Vital stats, like blood pressure, weight, temperature, etc.
- Explicit instructions of any kind – write down all the details
- Possible side effects or interactions to watch for
- What to do if a new symptom arises? Whom to call? When to go to the emergency room?
- What procedure or test was done, for what reason, and what was the result?
Symptoms and Side Effects
Keep careful track of symptoms and side effects. You might think you will remember everything and there is no need to record it all – most people think that. The truth is that you may be dealing with so many medicines, symptoms and side effects, that it will be impossible to keep track of all the details without a written record. Remember that what may seem minor to you, may be an important sign to your doctor. When in doubt, write it down.
Use your notebook to keep track of all medications used, including over-the-counter medications. Record the following for each medication:
- Name – be careful to spell the name correctly, many medications have similar names!
- When and how it is taken
- Date started (and stopped if applicable)
- Side effects
- Effectiveness, as applicable (e.g. is it easing symptoms?)
Note – if the patient has a port-a-cath for infusions, make your life easier by noting the needle and/or catheter size.
Accordion Files are Fabulous
An accordion file is a great way to keep your documents organized. Customize the tab labels to meet your needs. Consider these labels:
- Test results, including CDs of radiological exams
- For each doctor, with instructions received and printouts of emails needed for future reference
- Legal documents
Why Not Use a 3-Ring Binder?
I prefer the combination of an accordion file and a notebook over a 3-ring binder for several reasons. With binders, papers can fall out when the paper holes (for the clasp) tear, and there is no secure place to store items that are not paper, such as CDs of test images. Additionally, the binding of a spiral notebook makes it easy to open it all the way and fold it over on itself, leaving you with a good sized surface to use when you must take notes while sitting in a doctor’s office.
Are You or Someone You Know Managing a Serious Medical Condition?
Keep your notebook and accordion file together in a bag or backpack that you can quickly grab when you are going to a doctor’s appointment or the emergency room. Don’t forget to take these items with you if/when you travel.
Consider the ZaggoCare System, which includes a notebook and accordion file, as well as an easy to use ZaggoCare Guide filled with practical tips, along with a few other organizational tools, all in a roomy, lightweight tote.