1:38am July 27, 2015

When a doctor didn’t believe me but then test results proved I was right…

withasmoothroundstone:

whatshouldwecallchronicillness:
[animated GIF deleted because it was giving me a headache, even though it was half the point of the post, sorry I just couldn’t reblog it… it was basically a guy looking satisfied with himself, but his head jerking over and over was messing iwth my brain functioning]

This happens to me ALWAYS.
ALWAYS.
I have so many test results proving myself right, and yet some doctors refuse to learn to trust me despite my rather extreme track record in this regard.
Just recently I said I was bleeding out of my stoma to a ridiculous degree. Showed the guy replacing my tube that the toilet was full of blood, told him there was at least ten times as much blood as was in the picture. He told me the blood was actually bile and that I was not bleeding. A week later I got an endoscopy that showed an ulcer with a giant blood vessel right in the middle of it, spewing blood and blood clots. But I know that even if I go back to this doctor and tell him this happened, he’ll laugh at me at best. Because he does that. He laughed at me when I said I knew the difference betwee bile and blood, and then he literally refused to respond to anything I said the entire rest of the time we were in a room together. Literally just ignored eery word I said as if I wasn’t talking. It was incredible rudeness. But it seems like everyone around him goes “well that’s just what he’s like” so it’s supposed to be okay, there’s like this culture of excusing it because he’s a doctor or something. IDK. I’m always afraid of running into him because I just get sick of his bullshit attitude towards me, which has always varied between condescending, contemptuous, and hostile.

Does your hospital have Code/Condition H/HELP? (It varies in terminology?) Basically, if you can’t get your doctor to listen to your concerns, you (or your family) dial the in-hospital hotline and report the code, and you’re seen by designated responders who address your concerns immediately and investigate why your doctor was ignoring/dismissing you. I’ve never had to use it, but I was made aware of it last time I was an inpatient.
Here’s something about it.

It has Patient Relations, which I’ve had to use multiple times, usually when I was far too out of it to actually call them myself, so my DPA ended up doing it. It was sometimes an extreme struggle even then. Luckily my main doctors all believe me about stuff – they’d be stupid not to at this point, as I said I have so many tests backing up so much stuff I’ve said that they no longer doubt anything I say. But when I end up in different departments of the hospital, I often run into trouble of various kinds. And sometimes it’s trouble that would not be worth calling Patient Relations over. But sometimes it’s life and death stuff. And I never know which it’s going to be. But I have never been able to successfully contact them myself, it’s always been done for me.

One example was the time they said that because I had a developmental disability, I would need an outside staff person with me 24/7 before they’d agree to admit me, even though I’d been hospitalized there many times before and had never caused any trouble or needed anything that different from any other patient because of being DD. My DPA called Patient Relations and I was admitted immediately. But then they immediately started trying to throw me out, and it took the combined efforts of several of my regular doctors to keep me there. And then it was a fight to get life-saving medical treatment, where even Patient Relations couldn’t help us and we had to turn to the Internet and the threat of bad publicity. (They conceded, when pressed, that I needed the treatment in order to survive. They just kept coming into my room every day, several times a day, trying to persuade me not to accept the treatment. Once people started calling the hospital, they suddenly said “You’re getting your feeding tube tomorrow.” And I only got one more bizarre visit trying to dissuade me, and even that was half-hearted on the part of the doctor.)

Then when I got the feeding tube and there were complications, they ignored my pain levels (because a part of the tube was lodged in the wrong part of my body, causing excruciating pain any time I moved at all) and ignored the fact that something could be wrong, and treated me like I was just complaining too much and that if heart patients could stand up then I could surely stand up even though I couldn’t roll over in bed without sobbing my eyes out. Meanwhile my roommate got tons of pain meds thrown at every twinge she had no matter how minor, and told stories of a procedure similar to the one I’d had, and talked about how wonderful it was that any time she squeezed their hand they’d give her more anesthesia so she wouldn’t feel the pain. (I had my procedure screaming in pain due to non-working anesthesia and was simply told “hold on” for the entire hour or so the procedure took. I was also told “You won’t remember this later so it doesn’t matter that it hurts.” I still remember that, all of it. Nobody gently held my hand and told me to squeeze if I felt pain so they could adjust the anesthetic. They just treated me like my yelling and squirming was bad behavior.)

And that was all in one hospital stay, a couple years ago. So Patient Relations was helpful for parts of it but couldn’t do anything about other parts. And this is far from the only time I’ve had to involve Patient Relations. There was the time they decided that I could eat just fine, gave me a giant fish dinner, and I puked it all up of course, but they said I was good to go home even though I couldn’t keep down any of my meds and needed IV replacements so I wouldn’t die. And then when I refused a med that was on my chart as something I was allergic to, threatened to stick it up my butt if I “refused” it. My DPA called Patient Relations and suddenly I was given a week to recover and start eating on my own, given new nausea meds, etc. (That was my first gastroparesis hospitalization, but we didn’t know back then that I had gastroparesis. They just thought I was randomly extremely nauseated.)

And there was the time I belonged in the ICU – one of many times probably – but my doctor said he would only treat pneumonia, not any of the other conditions I had, because pneumonia was what I was brought in for, therefore… none of my other conditions mattered. (Those conditions were eventually found to be gastroparesis, myasthenia gravis, and adrenal insufficiency, all of which were messed up either by the pneumonia or by the treatments for pneumonia or both.) Nobody put me in the ICU, although they did transfer me to a better ward after someone kicked up a fuss about them ignoring my needs when I was on the cardiac ward (as overflow, not as a cardiac patient – they didn’t like the fact that I was violently ill and making their quiet, sedate ward too noisy – so they simply closed my door and pretended I didn’t exist and that my call bell didn’t exist either). I was severely delirious and in no state to explain everything that was happening to anyone, and I’m lucky I didn’t die. (I know what death looks like, and it was sitting patiently next to my bed for weeks.)

And on, and on, and on. I could tell so many stories, and Patient Relations only helps sometimes, in some situations, to some degree.