So a bit high and low. On one hand, good to know our options are for me but everyone in my family is way more angry at this situation than I am? I don't know why no doctor told me my porphyria test was a low positive A YEAR AGO
Would have been really fucking sweet to hear THAT
Rather than being treated as someone with absolutely no medical problems and having doctors look at me like am crazy. Holy fuck I'm so mad about that part. The rest isn't too bad to me because like the doctor who RAN THE TEST should have followed through and arranged a 24 porphyria urine collection test for a more definitive result rather than a different doctors who ignored it, didn't follow up and then doctors assuming they aren't seeing a diagnosis of porphyria with the patient or the chart because the doctor who ordered the test actually didn't bother to do it properly and may have delayed care for over a year, caused scaring on my kidneys, damage to an ovary, a Fallopian tube, my pancreas, my gall bladder completely cut out, and several other surgeries and procedures which may have gotten me answers sooner
So the plan as now is wait for the Porphyria test results coming back. If it's possible, great, then we have a plan. If it's negative, we need further testing. That would either be a head and spine MRI or an EMG for determining if it's a central nervous or peripheral nervous
If those don't show anything, I'm just going to plan on requesting a new porphyria test. This episode had been in progress for ten days. So probably further on the tail end.
Anyways the test comes back tomorrow or the next day at the latest.
Sort of related but the doctor (Doctor Stagg) who tried to do my lumbar puncture. It was in the trauma room, where the emergency set ups were. It was such an intense environment. Then he had to reinsert the needle one lumber space higher untold him he needed to get the needle out right the. Like right then. And he said
"you can'ove, you have a needle in your backc
Like what? What the absolute entire what.
And be proceeds to fling the spinal needle into the sharps bin and was like "what do you WANT from me! Because you clearly don't want to get answers as to what you're problem is."
And then then I needed an MRI few days after after inot referred into a other hospitals. Those nurses were very sweet and tthe techs were sweet. When I couldn't manage it after a few attempts (the MRI scan ) they took me back to my room but weren't. If you've ever had an MRI you know the tube is extremely narrow. You can't turn over to throw up. And when you can't vomit away from the body you can die.
And now this other small anecdote on of the nurses told us that there wasn't anything wrong
And then, again, I had to get a nasal swab. I told her no. Chronic sinus. She pinned me down and really, why the ever loving is that ever okay. Like
How is it ever okay to bully, berate, or betray a patient's in the absence of a legally binding statement or contract.
The fact that it was necessary for doctors and nurses to make fun of my medical issue, call me a liar. It isn't that they have opinions. That's fine. What's not fine is taking about a patient to a colleague in the hallway less than a foot away, with the door wide open, in English.
New medical staff, please keep this in mind when at work. Your voices do carry down beyond the patient doors. They or their loved ones will hear.