Misinformation or No Information
Our dialysis story — chapter 12
When I picked up Ben from dialysis on Monday, I just happened to see something white peeking beneath the blanket in his bag. Pulling it out, I had several stacks of stapled pages in my hand.
What are these?
I don’t know.
No one showed you these pages? No one told you about them?
No.
Sigh.
A few weeks ago, I would have assumed Ben forgot that someone had shown him the papers or forgot someone discussed them with him. Thankfully, dialysis is clearing the brain fog he experienced for more than a month. I trust his memory much more these days. If he says no one told him about the papers, I believe him.
At home, I shuffled through the documents. The first seven pages were Ben’s information from the dialysis center’s database. Well, some of his information. Some info was missing. Some info was wrong.
Then, there was an Evacuee Notification Letter. Say what? Who is evacuating?
Then, a Patient Curfew Letter. Huh?
Then, a packet explaining Fluids — how much, what, when — with a warning:
Fluid Related issues are a TOP CAUSE of HOSPITALIZATIONS for dialysis patients.
Then, two sheets: Managing Your Sodium (Salt).
Then, a very perplexing set of instructions for Ben to disconnect himself from dialysis.
These papers say you were trained on how to disconnect yourself from dialysis. Did someone one go over this with you?
Looking confused, Ben replied:
No. Why would I ever have to disconnect myself? The nurses do that.
The instructions say you would only do it in an extreme emergency.
More confused, Ben said:
Like what? Every nurse in the building dies simultaneously?
Good question.
The final packet is seven stapled pages titled: Hurricane Disaster Plan.
I read the plan carefully.
First, prepare an emergency box. The list is long: food, medicine, batteries, first aid kit, radio (Does anyone have a radio these days?), water, disinfectant, baby wipes, bleach, clean cloths, etc.
I must mention that the food list includes “2 loaves of bread” — hmm, if I put two loaves of bread in an emergency box today, it won’t be edible come July.
Documents to include:
- Medication List — got it
- Dialysis Treatment Orders — provided in the first seven pages
- Instructions to Disinfect Water — provided
- 3-Day Emergency Diet Plan — provided, but not diabetic
- Wallet Card — no idea
- Copy of Medical History — Say what??
- Medical Emblem — Huh?
I have to ask the center about the Wallet Card.
I had no idea what a Medical Emblem was. I Googled it and got:
Hmm, this doesn’t seem right. There are a few other images deeper in the page— none of which seem to apply to Ben. I contacted G at the nephrologist’s office.
They mean medical alert tags. You can get a necklace or a bracelet from Amazon.
Why didn’t they say medical alert tags? I placed an order on Amazon. Won’t arrive until we are one full month into hurricane season. Oh, well . . .
Lastly, Copy of Medical History.
Do they think we live in Canada or the UK, where medical information is consolidated and easily available? (Well, at least, I think that’s the case in those places.) Here in the medically f — — ed USA, our medical data is scattered, disorganized, unavailable, and certainly not printable in a report.
You may recall an earlier piece I wrote about the two hospitals in our city being unable or unwilling to share information. Ben has nearly all his care at the HCA Hospital, but when he fell in September, he was transported to the UF Health Hospital. UF Health couldn’t electronically access medical records from HCA and refused to email or call to get the information. After his discharge, HCA, and all associated doctors, couldn’t access his records at UF Health. Let’s not even think about his medical records in New Jersey.
So, where do I get this printed copy of his lengthy medical history??
Once again, I contacted G at the nephrology office.
Dr. E can print something that might be good enough. You’re right, though; there really isn’t a place to get all of anyone’s medical history. Such a place doesn’t exist.
As the first tropical depression of the season churns in the Gulf of Mexico, I’ll be working on creating Ben’s Hurricane Box.
Meanwhile, the plumbers returned today to fix the four issues the inspector noted.
When Ryan, the inspector, was here, he said I could email him photos of the fixed items, and he’d finalize the inspection. I did that as soon as the plumbers departed this morning, and I called the handyman to inform him that he can come and permanently repair the holes.
Ryan called:
I disallowed that inspection.
I’m sorry, what? I don’t know what that means.
I inspected your place — what, two weeks ago, wasn’t it?
Yes.
Well, I only keep an inspection open for 24 hours. If the items aren’t corrected in 24 hours, I disallow the inspection.
You didn't tell me that.
I can’t leave an inspection open indefinitely.
Okay, but it would have been nice to know that.
The plumbing company knows that once they receive an inspection, they have 24 hours to make the repairs.
Well, now what?
The plumbing company has to request a new inspection. Then, either a different inspector or I will come to your place to inspect it again.
But I have someone coming to repair the holes in the walls!
Nope, don’t do that. If the holes are permanently repaired, who ever does your repeat inspection will have to break in through the drywall to do the inspection, and you’ll have to pay to have the holes repaired again.
Seriously?????
So, I’m back to waiting — with holes in my walls.
© Dennett 2023
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