IBM Sorting Machine
an old-fashioned method of sorting

I’m assembling all my medical records in one place in preparation for the big consultation next month. By medical records, I mean not just lab results and imaging reports, but radiology films, doctor’s notes, procedure notes, therapy abstracts, medication history, the whole nine yards. And I’m wondering, How do you keep track of all these things?

I’ve been sick since 2004, so it’s a lot of information to keep track of. It’s scattered across medical facilities in three different states, across a myriad of clinic networks & private practices, and in paper or electronic form.

I have a medical resume of sorts that Elliot encouraged me to pull together; it’s definitely be extremely helpful, but at this point, it’s really just an abstract or a table of contents. I’ve been thinking about getting 250 sheet protectors and a binder and just putting everything in there, maybe even with binder tabs, just to have a handbook with me. Or maybe a computer? [Lugging stuff like a computer around a clinic doesn’t sound fun (but neither does lugging a binder!)] The binder definitely has the upside of demonstrating that you’ve actually seen a doctor before, but I sincerely hope I’m past the point of convincing people of that. Plus it’s a little easier to lay stuff out. (Speaking as the person who handwrote her exams for her 8 hour comprehensive exams.) It’s nice to be able to understand what I have in my hand if I’m in charge and have to go around bossing everyone else around. But I have no objection to being the holder of the magic key that everyone else understands and is in their native language (even if I don’t speak it.)

sorting the papers on my desk
another sorting method (probably not ideal for my situation)

Does anyone have any thoughts or suggestions? I’ve already contacted the coordinating physician at the clinic, and he just told me that the more information at his disposal the better. But my historian brain and my chronically ill experience tells me that how information is sorted is half the battle.

And I have serious objections to spending tons of time uploading data into a system that won’t give out more than I put in. At least give me some summaries or nice bar graphs please??

I have a giant file folder and an electronic file folder with all my lab & imaging results (and the more recent electronic images!) But the only record I have of medications I’ve been on is receipts from pharmacies. Does anyone have any suggestions for how to go about retrieving medication histories from pharmacies (or insurance companies) or how to organize that information in a way that is potentially useful??

Any and all suggestions would be helpful (and would keep me from losing my already lost mind.) Programs, apps, organization methods (electronic or paper). If you want to set my medical history to music or paint it, I also would have no objection. Comment here or email me at abigail (dot) cashelle (at) gmail (dot) com.

Thank you so, so, so much,
Abigail

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7 thoughts on “Keeping Track of Your Own Medical Records?

  1. My pharmacy was more than happy to print up my daughters history when I asked then to. We also keep a huge ziploc bag of all her unused and empty containers of meds. We also make sure to sign the paperwork that allows each doctor access to other doctors’ files. That way I just have to give a new dr. a list with her other doctors and their contact info. We do keep copies of all imaging, but lab results are in the files that the Dr’s can transfer among themselves.

    1. While one problem certainly is gathering all the data, I’ve learned in the past few years that if the data isn’t organized well, medical professionals don’t have the patience to sift through everything and so they’ll just reorder the same tests & diagnostic evaluations. Which is annoying because they’ll still come back negative and then they’ll give up. I need to fast forward past all that nonsense at least as much as possible.

  2. Thanks for linking up with medical mondays! I think approaching your records collection like a research project/paper would help. Do an outline of all the physicians you have seen, medications etc and then start requesting copies. I think putting everything into a binder w a table of contents type sheet is a great idea. It might be helpful to scan everything and do it electronic although Im no help with apps/organizing unfortunately. Thank you for your openness and honestly in bringing light to “invisible” illness. Best of luck with getting answers and recovery.

  3. Thanks for linking up with Medical Monday! Keeping our records of our health can really help us develop a clear picture of our health. I need to go see my doctor:)

  4. Luckily, my husband is at a hospital which has an e-records and all the departments are interlinked! I have a friend who has a terminally ill child and she is constantly shlepping her child’s records around from clinic to hospital, etc… She has them all organized, and tabbed according to a table of contents. They are also sub-grouped by which department ran the test, or documented a visit. Best of luck to you, and wishing a healthier 2014 for you!!! Thanks for linking up again with us!

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