Having the right information within reach shows your preparedness and ability to keep track of your health. It also makes your journey a little more smooth.
So Many Questions
In my visits to the ER and admissions to the hospital, staff often had many questions for me. Many times, staff would ask the same questions as each one came into the room. Because I wasn’t lucid, sometimes doctors and nurses would ask questions but I couldn’t remember the answers.
I visited the ER about a dozen times and was admitted to the hospital in seven of them before my transplant. I am FAR from a frequent flyer to the ER. But, I do know that with every visit you come more and more prepared to (hopefully) streamline some of the processes.
Medical staff will ask everything from the obvious and broad (and somewhat annoying honestly), “What brings you in today?” Then, they may be more specific, “What medications are you on? I just need names, doses, and times you took them.” Finally, the ahem more intrusive, “When was your last bowel movement, and can you describe it?”
After a while, I started to compile everything I might need to provide and keep that information with my go-bag. Yes, I had a go-bag. Like the military or the FBI or something (OK, so maybe I’m making it sound cooler than it really is). But I have another post about that though, so I’ll stay on track here.
What Information Should Be Within Reach?
I kept all of my paperwork in a portable accordion folder of sorts (like this one).
Some of what I kept in my folder is below. The information and paperwork to have on hand will differ for everyone. I kept the following information in my folder:
- A calendar with medication (names, doses, and times taken). Additionally, you might include BM’s in a day, weight, water intake, specific dietary intake (e.g., sodium), and pain levels
- Insurance information (or progress toward insurance and payment programs)
- Emergency contact information (I now use an app on my phone that contains all of this) {{LINKS to apps}}
- Notes from primary care or therapy visits
- Notpad(s) and pens
Paper vs. Electronic
As you can see, I kept paper records for many things. This was for two reasons. First, the technology available at the time did not include apps that covered what I needed them to. Honestly, I haven’t found one app yet that would cover everything I kept track of on my paper calendars. Second, I never knew if I would be lucid enough to articulate everything so I wrote it all down. That way, my mom (or anyone really) would be able to provide information to my care team.
Throughout your journey, you will think of things you want to ask your doctors. Then, when 12 of them walk into the room, *POOF* your mind will go blank. Write your questions down and keep them in your folder for quick reference.
Notebooks of Information Within Reach
You are the middleman between all of your doctors and caregivers. You could visit your PCP in the morning and they make a small change to one of your meds. By evening you’re in the emergency room and the doctors there want to know why you made the change. Now you have a note about why your PCP made the change AND you have the dosage on your calendar. Think of how impressed they’ll all be!
Notebooks will also come in handy when doctors speak in doctor-ese and you don’t know what they are saying. If you can’t ask them right away, write it down. That way you can be sure to ask them later. At the very least you can look up definitions on Google. This empowers you to know better questions to ask when you see them again.
Oh boy, I just said Google. Let me be clear here. Google is not where you want to look up, well, pretty much anything except for definitions. “But I found you on Google you say?” Well yes, but I’m different. All kidding aside, I’m not different at all. I am not your doctor and I do not know any specifics about you or your case. I can offer support and hopefully guidance that helps you work with your doctors more closely. Then perhaps your journey can be as smooth as a bumpier-than-all-get-out roller coaster ride can be.
On that note, buckle-up and keep your arms inside the ride at all times…except when you are being a super-prepared patient by having information within reach to give the doctors everything they need.
