Wednesday, July 30, 2008

Comedy of Errors and Identity Crisis

Last week I had the tilt-a-whirl test. Because I had been wrongly instructed to go to the main admissions desk and no one there would listen to my objections that I was having an outpatient procedure (this was in the computer record), I was checked into the hospital. I refused to sign the blanket consent form that you agree to any medical procedures the hospital wishes to perform and wrote that I wanted informed consent for anything (in an emergency, I would waive this right). I was told that I could not sign just part of the form and the admissions person wrote "patient refused to sign." There was no option for informed consent under reasonable conditions. I haven't seen a blanket consent form before, but that's scary! On the same form, there was a blanket consent that you agreed your records could be used for any medical studies that you "couldn't" refuse to sign (my guess is they'd use your records if they wanted to anyway or refuse to treat you/admit you if you refused). I asked for the ethics committee phone number.

Instead, perhaps as punishment, I was asked if I wanted a private or semiprivate room. I said I wasn't supposed to be assigned to a room, but was there for an outpatient procedure. The admissions person said okay, and then took me to private room 216 even after I again clarified which test I was to have and that I was not staying overnight. I'm not even sure which department I was taken to (the department for noncompliant patients who ask questions, probably) I continued to insist I was in the wrong place, but no one listened. People kept asking where my husband was and said that he needed to take my "valuables" (I doubt anyone would bother to steal my plain gold wedding band). I refused to change into a gown as instructed and phoned my husband for assistance. Fortunately the RN in charge of the test didn't assume I was a "no show" and went looking for me, wheelchair in tow since it's a long way across the hospital. The admissions desk told her I had not arrived when she called them repeatedly. I had brought my own scooter, thank goodness.

Suddenly I can see how big medical mistakes happen. Damn, when a very lucid patient tells people what procedure they're having done and that they're not supposed to be there overnight but more like an hour and *no one will listen* then there is something really wrong with the medical system. I only escaped with the help of the RN in charge.

The test was relatively uneventful except for the RN, who really did enjoy being in charge, not having enough respect for my modesty. I felt unnerved at points, I'd rather not say why. After the electrophysiologist arrived, we determined we knew each other from being in the same university honors program at the same time. Cool to see that other people have done something really useful with themselves other than developed medical conditions. Blood pressure drop, extreme nausea and wooziness with the nitroglycerin right at the end of the test. I found out firsthand why you're not supposed to eat 6 hours in advance, and it doesn't have anything to do with the test results. Any cookies would have been hurled. The conclusion is confirmed that I don't have a cardiac/autonomic problem causing the passing out and near passing out, but that it's from pain, though pain medicine will also lower my blood pressure. So I'm supposed to control my pain as much as possible without pain medicine, which means padded walls or the use of the scooter. The cardiologist stopped by since he runs cardiac caths on Tuesdays and reiterated what the electrophysiologist said. He turned bright red for God knows what reason, I hope it wasn't anything with the RN and her weirdness and hope she me adequately covered, though strapped in so as not to fall if passed out, I couldn't really do much anyway. News alert to medical professionals: just because you've seen everything doesn't mean it's not an issue to us who would never purposefully put ourselves on exhibition.

So I was approved for my trip to a higher altitude and headed the next day to Pike's Peak and Rocky Mountain National Park, dragging my body behind me like a tired out child. My children, in contrast, never whine on hikes anymore because not only are their legs longer than they used to be, but their limits are no longer pressed thanks to mom. Wheelchair accessible trails are really bumpy so I've opted for walking and regretting it the next day. Unnerving to people when they see you fishing from the scooter earlier in the day and hiking a trail later on. I had blood pressure problems in Florissant and the vision in my left eye was as blurry as when I have my eyes dilated. My husband, who knows nothing about medical issues, asked why that would be anything to be concerned about. "Stroke," I said, while contemplating how far away the nearest ER was and how I'd subject myself to hell for nothing, but while waiting for the lightning storm to clear, my vision and BP got better and we went hiking.

My husband offered to buy me a salt lick from the local ranching supply store since I can only drink so much Gatorade when I'd like to leave the house for a while and I consume outrageous amounts of salt.

Now that I need to order the better scooter for better ergonomics in the next few days, I'm having an identity crisis about it, pulling out all the stereotypes I know people have about these things. My sister says I've always worried too much about what other people think. I told her she's one to talk. I feel like I look awful, slobby, goofy, ridiculous. (And what if I do?) As much as I've looked forward to better seating and less pain, suddenly I am panicky and quailing about it. I asked my husband what if I end up not needing it or needing it much after spending that much money. He said that would be great. The insurance company on our last call said yes, they received all the documentation, no they wouldn't approve it or give a reason for the lack of approval, but we could sue them if we liked. They actually said that. We can do better than that and call HR and let them know why they shouldn't choose Pain in the Ass Insurance Co. again. But no, I don't have the energy or resources for a lawsuit that would cost us more money than the equipment. That's why they get away with this kind of thing, and they know it.

But back to my identity crisis. No, I don't show judgment about anyone else using equipment that they need. But I hate myself for it. It's not something I can explain or understand. I don't know what's into me. At the beginning of each day, I can get along pretty well, do a little housework and get dressed, walk some, but at the end, I've had difficulty with the single step onto my sister's porch.

This week: stomach virus. It's very difficult to keep BP up with that, am not feeling well.


Joel Sherman MD said...

If you're interested, I have commented on your story on my blog. Your experience certainly is typical of the problems with informed consent.

FridaWrites said...

Thank you, Joel.