If you are not organized now is the time to start! There will be a lot of paperwork to keep track of now. It is always good to have someone go with you to your appointments to take notes and be that “second pair of ears” too.
I would suggest beginning first by creating a binder that will be solely used for all of your appointments. Buy tabbed dividers. There are different ways you can organize your binder. Here is what Mike and I found useful. (I have also included templates of documents that I created to record information, please feel free to print and use these documents for your own use).
Tab 1: Business Cards Keep all of the business cards from every doctor you see. You can either purchase a business card sleeve or just staple them on to a regular binder tab. (You don't need to be fancy). This way if you have all of your doctors' names and numbers in one place, in the front of your binder, they are readily available.
Behind this tab I would collect and put any maps of the hospitals or facilities you go to. Although you may be visiting these places often and begin to know them like the back of your hand, if you happen to have someone go with you who is not familiar and need to give them directions, having the map handy will be helpful. Also, if you ever need to park in a different parking garage and need to navigate your way through to a different section of the hospital the map will be helpful.
Tab 2: Medical History This is important to keep record of your medical history so you have dates and information right infront of you. Especially for those with cognitive or memory issues it may be difficult to recall or remember dates of when you had surgery or prior treatments, so to have the information right there makes it that much easier! I typed the information out just using a word processing program, no fancy template. LIVESTRONG has a wonderful template online free for download Medical Treatment Summary
Tab 3: Medications Create your own Medication Chart. Nurses love this! So not only will you gain browny points with the nurses but it will make your life so much easier. When you sit down during your appointment and the nurse asks what medications you are taking, all you have to do is whip out your medication chart! We used the template I created. It has areas to record different medications, what the medication was prescribed for, the dose,etc. I always had a copy in his binder and extra copies when we went on appointments.
There is a 2nd page for anyone who may need help maintaining a schedule of their medications. When Mike was first diagnosed we found the amount of medications he was prescribed to be very overwhelming. We created a daily schedule that we hung on the fridge or next to his pill box to help us monitor his medication. (There is also a 2nd column included for anyone that is on a chemo cycle and may be taking different pills during different days of the month).
Feel free to modify the template as you see fit, or if you need help, please email me!
Tab 4: Health Calendar I created this calendar to help Mike and I monitor how he was feeling. We found sometimes when we would go to his appointments we would forget some of the symptoms unless we wrote them down. So I created a calendar and a "key" of some of the typical symptoms he might feel during the month. We would hang the calendar on the refrigerator and then anytime he felt a symptom or told me he was feeling a certain way we would record it on the calendar. There was also room on the bottom for more detailed notes.
Then before an appointment we found we were better able to communicate with the doctor about how Mike was feeling over the course of the month or weeks since his last appointment. It was also helpful for us to look at the calendars collectively so we could see if any patterns were forming at certain times during his chemo cycle. (Feel free to modify the key to best meet you needs. Mike's symptoms primarily were due to headaches, pressure and chemo).
Tab 5: Labs/MRIs Any time Mike got bloodwork done they would give him a print out of his results. We held on to these. If we ever received info about his MRIs we filed these in the binder too.
Tab 6: Hospital Records This is where we kept documents from the times Mike was admitted to the hospital. Sometimes I had taken notes on these documents, there was information about medication administered. We also found it helpful to refer back to when/if Mike were going back in for the same procedure so we could see how long he had stayed in and read up on our old notes.
Tab 7: Appointment Info Upcoming appointment confirmation letters or instructions were filed here.
Tab 8: Appointment Notes This was where I stored blank paper and was prepared to take notes for Mike for the day's appointment(s). The night before Mike and I would sit down and look over his health calendar and discuss any symptoms that he may have been having since his last appointment. Then we would write questions for the doctor as well. We would also review our notes from our last appointment (see Tab 9 below) to see if we had any further questions. This made us feel like we were prepared for the appointment being active participants in his care. The day of his appointment I always made sure to date the page and recorded his vitals.
Tab 9: Old Notes After the appointment I would file the notes under this tab on top of the others. (So the most recent notes would be on top). This was always the thickest section, but again, very helpful to have because we could always look back and refer back to other times, treatments and surgeries to see how Mike reacted and compare.
Tab 10: 2nd Opinion You may not use this tab, but it is something to think about. There is nothing wrong in seeking out a 2nd, 3rd opinion. If you do choose to get another opinion, hold on to all of your records.
Back Binder Pocket Folder: Place a manilla folder to hold copay receipts and record mileage to and from the hospital for tax purposes. Here's a chart you may want to use to keep track of this information. I know it may seem crazy to think about this now, but paperwork will pile-up fast so if you are organized now, it'll help out later.
Not only will it be important to organize a binder, but also a couple files in a file cabinet at home too. You will want to watch the medical bills that are coming in and make sure they are accurate. Here are some file folders we set up:
- Health Insurance: We filed any EOBs (Explanation of Benefits) that we received from our health insurance carrier.
- Bills to Pay: As the bills came in we checked them to make sure the fees were accurate and that they were not already paid.
- Paid Bills: Once a bill was paid we would write the date that it was paid, how it was paid (if it was via check we would write the check number or if it was online we would write the confirmation code) and then file this in the folder.
- Pending Bills: If there was a bill that was in question we would call account services at the hospital or facility and take notes. We would write the date we called, name of the person we spoke to and what they said if they would reissue a bill, look into the bill for us and contact us, etc. and then file this bill in the folder.
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