On the difficulty of obtaining 20-year old medical records – and the emotion and enlightenment therein

In preparation for a visit in a few days to the Cleveland Clinic (to see a host of specialists about ongoing medical mysteries – follow-up post to come), I requested medical records from the U of Michigan hospital system dating back to when I was first diagnosed with Myasthenia Gravis in 1992.

Requesting one’s medical records for one’s own purposes is not always easy and certainly it is not incentivized in any way. In fact I had to pay just over $50 for access to my records, while it would have been free to have them faxed or mailed to any doctor for the purposes of ‘continuity of care.’

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This is ludicrous! My purpose for obtaining my records was to have more complete continuity of care; Instead of having to order and send my records to every new neurologist I visit, I want to be able to bring my information along with me. I want to own it. I want to be able to open my file and say ‘here, the answer you’re looking for is contained within this letter which was typed on a manual typewriter in 1992 and which contains all of the information about my diagnosis.’

I want

to help them

believe me

I WANT TO HELP!

Today, just in the nick of time, my records were delivered electronically (after I paid the fee). I opened them up and scrolled through, and started reading a progress letter written from my beloved old neurologist to my pediatrician back in 1992.

ImageAs I read, inexplicably, a few tears escaped from my eyes. I thought about this and realized that this letter was giving me a window onto my past self, that 14-year old girl who was terribly embarrassed about her chest scar and who used to have a hard time brushing her hair in the morning because her arms were so weak. I felt a tenderness for that skinny, freckly girl with braces who somehow kept playing on the basketball team even though she wasn’t strong enough to shoot a free throw in the summer of ’92. I felt grateful to have the opportunity to peer into this medical version of my past (at a price, of course).

I also learned by looking at my records that some of my GI issues that I thought were new, have actually been plaguing me since the 90s. I guess I blocked it out; if I hadn’t obtained my own records I wouldn’t have recognized that trend.

One awesome thing about the records was that the letters were literally typed. Typos were made in pen. Amazing!

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Also, “The mental status is entirely normal”:

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Classic quote!

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