I was scolded by my PCP for challenging them, but it may well have saved my life. They were in charge of monitoring my heparin, back in the day before sub-Q heparin when you had to be hospitalized for a couple of weeks following a blood clot so they could administer it via an IV pump.
I was dangerously hypo-coagulated (too much heparin - and at risk of having an uncontrollable bleed), so they had to repeatedly stop and start the heparin. They were worried about how many sticks they had to do on me (I stopped counting at 100), so instead of testing before they started the heparin again they would start it back up based on half-life calculations and test only after it had been back on for an hour. Repeatedly. Because I was still dangerously hypo-coagulated at an hour they would repeat the process. I was pretty sure, by the second time, that I never dropped out of being dangerously hypo-coagulated. So I politely explained what I believed was going on. They gave me the half-life explanation. I asked them to test before starting the IV again. They refused. So I refused treatment until they tested. It took several hours before I tested in the safe level again.
Ironically, it was the same condition - then rare - in which the more experienced doctors on my team trained me to research and advocate for myself. They had no clue, and nearly performed surgery that (we now know) would have been disastrous. After we decided against surgery, they brought me every article then available (perhaps a half dozen), explained what they knew - and what was unknown, and asked if I had any thoughts (this was after the heparin incident . . . so they knew I was no dummy). I proposed a non-medical treatment plan - triggered by an off-hand comment they made. They agreed (even though it was against hospital protocol, and somewhat risky). It worked. I am one of few people from that era who have full use of the impacted arm.
Since then (mid 80s), I have saved my uterus, self-diagnosed my daughter's rare medical condition (confirmed by her doctor who refused to test her for it until I insisted), and self-diagnosed the presence of my own cancer (which turned out to be a rare, aggressive, cancer which is not normally diagnosed until it is too far advanced to treat), among other things.
I have been pushing people to advocate for themselves, sometimes to the point of making them angry with me because they have 100% confidence in their doctors. No doctor - even the best (and I have been treated by several of the very best) deserves 100%, blind trust. I've been doing this long enough to have several individuals come back and tell me they wished that they had listened to me. I always feel guilty, even though I know I did everything I could have at the time.
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