This week I’d like to get some feedback about what you do to organize your (or your kids’) medical stuff — appointment schedules, contact info for health care providers, past lab results, key journal articles for sharing with new health care providers, etc. — and what you’d like to do better.
I consider myself fairly organized, and yet my XLH-related stuff is all over the place. Appointments are in my digital calendar, current meds are in a digital notekeeping app, Lab results and doctors’ reports are spread out over multiple patient portals. Information about XLH (journal articles) are spread out eve more widely, so I end up doing a search at PubMed whenever I need one. It would be nice to have it all in one spot, either digitally or physically, but I haven’t quite managed that. If I’m at home, I can access what I need, although I do waste some time trying to remember where I put it. When I’m away from home though, it’s harder to access anything other than my appointments and my list of meds.
I was hoping, back in the late fall when I got the welcome swag from Kyowa Kirin NA that the planner they sent would be useful for collecting everything in one place, but it didn’t have any of the things I would like in an XLH-related planner. Which got me to thinking about what I WOULD like in that kind of planner, because while the execution was flawed, it is a good idea to have everything you might need to refer to in a single spot.
So, what would you want to include? To get you started, I’d want dedicated pages where I could record:
- the dates of my burosumab doses and any changes to the dose
- the dates and descriptions of any new/changing symptoms
- the names and dosages of all my current meds
- the dates and results of my XLH blood work,
- the dates and results of any XLH-related scans (x-rays, etc.)
- the contact info for each of my health care providers
- a schedule of the recommended routine testing that should be done, e.g., annual blood work, kidney scan every 2-3 years
I’d also like some pockets (or if it’s digital a place to keep links) for two or three basic journal articles about XLH. Maybe a spot to put copies of any letters I might have from my XLH specialist. I’d really love something I could hand out that says “DO NOT GIVE PHOSPHORUS without consulting my endocrinologist.” Maybe in the form of stickers that could be pasted into my medical record, although now that they’re electronic, I suppose that wouldn’t work. Oh, and a place to put my TAF (The Assistance Fund) information for easy access when the billing department calls me.
Does any of that sound useful to you? What am I missing?
The reason I’m asking is that I’ve been thinking for a while about designing just such a notebook for my own use, and I’m wondering if it would be of interest to anyone else. Something you could download, print, and add to a small three-ring notebook or a notebook-style calendar/planner? What if I designed a Google document that could be copied and serve the same function in digital form?
I won’t get to it, if I ever do, until at least this summer. For now, I just want to brainstorm what XLH-related information you think would be useful to have in one place for quick and easy access, either at home or on the road. Alternatively, if you already have a good system in place, I’d love to hear about it!
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Please note that the author is a well-read patient, not a doctor, and is not offering medical or legal advice.
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