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Long sucky day yesterday
Old 10-31-2018, 05:46 PM
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Nunavut Pants Nunavut Pants is offline
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Default Long sucky day yesterday

My mother has Parkinson's, and lives in an assisted living facility. She recently changed doctors, and the new one had a blood work-up done.

Things were pretty normal for someone in their mid-70s with Parkinson's, except for her hemoglobin. Normal range is 12-15 or so, hers was 8.3. Got a test several days later to re-check that; level was 7.5.

Doctor gets the result, tells me to take Mom to the ER for a transfusion, plus possibly some other stuff too. Tells me to go to Facility X. We get there, they don't do the other stuff and may or may not have the right things to transfuse Mom. They say go to facility Y, which has a "proper" ER instead of "just" an Urgent Care. It is not affiliated with the other facilities we are dealing with, but is the ER for the area.

So off we go. They check some stuff, including her hemoglobin levels. They're 8.5, and Facility Y does not transfuse due to hemoglobin levels unless they are below 7.0. So she gets treatment for some other stuff (not the "may or may not" stuff above, even!) and gets released.

Doc wants to know what's going on with her blood, so she prescribes a scoping. Both ways, up and down. We do the consult with the GI doc, and her staff says that "We can do date A or date B; we will let you know which later." I am not available on date A, and tell her such.

A week or so from date A, I get a voice mail "your procedure on date A has been moved back an hour." I call back, tell them again that I cannot make date A. So they schedule her for date C at 3 PM. They later call to move it to 2 PM. At facility W.

We get all the prep done ("attempting to launch oneself into orbit from the privacy of one's bathroom") and hire an overnight caregiver to make sure there aren't any problems that the staff of the assisted living place might take too long to help with.

We are to show up 2 hours early for the procedure, so we get to facility W at just before noon. Where we are told that we were supposed to go to facility Z instead. Some of the docs they gave us said W, some said Z. And the person who called me had said W....

So we are finally at the right place, we get up to the semi-private room and get the paperwork taken care of. They are doing some checks on Mom, and one thing they notice is her blood pressure is high. Very high, in fact, higher than we've ever seen it. (She gets AM/PM readings daily at her place.) Every time they re-check, it is getting higher. It finally is at 210/95 or so. And they call the anesthesiologist, who is in surgery. So they try the on-call one as well. No response.

By this point it is well after 3, and nothing has started. Mom is starving after more than 24 hours of not eating (she started fasting a little early the previous day) and 4-5 hours of not having any water either. She is shaking from that and from missing her 3:00 dose of Parkinson's medication. So she pulls the plug on the whole thing.

Finally the anesthesiologist makes it out of surgery and comes over to talk. Mom explains that she is shaking, her meds have worn off, she is hungry, and she is frightened of the PB readings. Despite the assurances that her BP will "almost certainly" go down when she gets the Good Drugs (TM), she says that's it. The doc takes about 10 minutes to try to convince her to go through with it, but they both know that she is absolutely able to cancel if she is concerned about anything.

It is after 4 by the time we finally get out of there. First thing we do is hit a fast food place so mom can have a burger. And some water.

On the way I made an appointment with her GP to talk blood pressure, which will be on Monday.

We couldn't cancel the caregiver who we also had coming in last night just in case there were any aftereffects from the surgery; it was less than 24 hours notice.

Fun fun fun fun fun.

I guess we can chalk this up as a practice run, because I'm pretty sure we'll be doing it again some time next month.
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Old 10-31-2018, 07:47 PM
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EricKei EricKei is offline
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We couldn't cancel the caregiver who we also had coming in last night just in case there were any aftereffects from the surgery; it was less than 24 hours notice.
Well, given the day she had, she might need a little extra help anyway O_O

Yeesh. First, I hope all of these disparate facilities get their damn act together. Second and more importantly, I hope they do so quickly enough to get your Mom some proper treatment!
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Old 11-01-2018, 06:22 PM
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Nunavut Pants Nunavut Pants is offline
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Mom's BP was down to normal at "home". They take it 2x per day. So it seems exceedingly likely that the anxiety caused the PB issue.

OK, so next time:
- Triple-check the facility
- Take the med records with us
- Take a day's supply of meds with us
- Have the appointment in the morning instead of the afternoon
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Old 11-08-2018, 09:44 PM
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Nunavut Pants Nunavut Pants is offline
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Followup with her regular doc:

BP can vary enormously in someone with Parkinson's. It was definitely too high, but very possibly a combination of stress plus the regular Parkinson's type variation, possibly aggravated by missing a dose or two of her Parkinson's medication. She now has a prescription for a very low dose of BP meds that will hopefully stabilize things more.

GI is supposed to call me about a rescheduled appointment. Nothing yet, but they haven't exactly been very good about calling me.
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Old 11-10-2018, 08:05 AM
Buzzard Buzzard is offline
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Wouldn't be the first time a doc's office is too busy to make calls. There's one office where I don't bother calling anymore, but just show up to make sure I don't get forgotten. (They don't respond to the pharmacies calling in, so why should I get any better, right?)
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