The Book is a three-ring binder that keeps all of our paperwork in one place. I made tabs for office visit notes, medication schedules, medication lists, vitals and pft’s (both home and clinic readings). The Book also holds all the important phone numbers, appointment reminders and blank paper for notes. At our Center, we receive requisition paperwork for the next appointment including requisitions for pft’s, xrays and labwork. This thick bundle of paperwork is always put in the book so that we know where it is when we arrive for the appointment.
There is so much to learn, to remember from each appointment. This is especially true in your initial connection with the transplant center (see Our Story: Getting into the Program). Key information from these visits is recorded in the office visit notes section. In addition to the visit information, I also write down any action items that we need to take, all medication adjustments discussed at the appointment, and any follow-up appointments I need to make with other providers. These notes are quite handy when we get home and debrief the visit. It has also been useful to take a retrospective look at the history of our journey.
Especially at the beginning, the medications were so new and changes were so frequent that we needed to write down times and doses for all the meds. The lists also come in handy for hospital admissions or other appointments when we are asked to report or confirm my husband’s current medications.
We have found The Book particularly helpful when my husband has been hospitalized locally. Because the medical records at our local hospital are not linked electronically to our transplant Center, it has been quite useful for me to be able to produce lab results or test results from The Book to share with the medical team caring for my husband.
The Book goes with us everywhere, every time. It’s so helpful to have everything in one place to grab on-the-go in emergency situations.