Between me getting to know a new rheumatologist, my grandmother's medical hell, my little sister's struggle with suspected MS, and now my father-in-law's diagnosis of terminal cancer, I'm finding that many people in my life are facing many new doctors. And most of us don't have a doctor like House who will become intellectually challenged by our various symptoms and try to pull them all together. What we have is a scattered medical history and the 15 minutes of face time with a flustered doctor.
I've written about pulling my health records into one place. But my doctors are not going to read hundreds of pages. I know this. And, god bless Dr. S., but I just paid $50 for my records and can't read a damn word. I miss my old fashioned rheumatologist who used to dictate and type everything.
What we need is a way to compile a narrative -- a quick 1-2 page summary of what's going on that a doctor can skim over. That admittance paperwork at the dr's office (you know, the "check if you've ever had a cold" type thing) is supposed to accomplish that, but we usually fill out as quickly as we can so that we don't hold up the appointment.
When I met my new rheumatologist, I typed out 2 pages for him -- a quick summary of medications, medical conditions, and what my treatment goals/questions were for him. He skimmed it and gave it back to me. (Have I mentioned that I'm giving him one more shot before I seek out my old rheumatologist's office in Kc? Yeah. )
For my grandmother, who has a history of all sorts of strange fainting spells that are getting increasingly worse, and my sister, who has a variety of vague auto-immune symptoms, sorting through the important info and the non-important info is a huge job. My father-in-law is also having the same struggles with his doctors -- his cancer goes back to 2001. But his joint pain symptoms are new and possibly unrelated.
It's also difficult to quantify what exactly the doctor has said -- even people in the same room hear different things. That makes it impossible to carry that info to another doctor. In a hospital, it's hell -- every new person coming by the room says something different and we don't remember who or what.
There are patient journals that carry this sort of generic info for kids -- major hospitalizations, immunizations, etc. I've seen diabetes and wellness journals that track day-to-day mood and food. I'm going to try to work on a hospital/treatment book that keeps a running narrative for the patient and attempts to provide some cohesion. Watch this space.