Thread by @LaraKD_2020

#NEISvoid I am trying to get our local backasswards medical corporation to set up my mother's patient portal correctly and they are insisting she needs to go somewhere in person to do it. Her next appts are all telehealth, because she's home recovering from a GI bleed. 🧵

Why is this shit so difficult!?! They set it up without connecting it to their organization, so no data has ever been added to her patient portal. 2 years of labs, visits, meds, etc.... Poof! You'd have to request them all on paper. 😡

And you can fax/email this organization a medical records request without ever seeing anyone in Medical Records in person, so why the in-person to give them your email address? Again, cuz we've already gone through all of this once two years ago and they couldn't get it right.

Portals for anyone you have POA or guardianship of are necessarily difficult. You don't want to step on peoples' privacy.

But I could fill out a form for med records and send it from her laptop and they'd never know. So why the weird difference between the two requests?

Also, there should be some sort of override. And THAT should be in person.

If you are disabled or elderly and WANT someone to manage your health information, appts, meds, etc., you should be able to show your POA/guardianship documentation and know they can take care of you.

These requests happen every day. Why is it like you are reinventing the wheel every time you have to do something for your elderly parent/disabled child? No staff ever know the quick & easy answer. And there is usually a quick & easy answer that you don't discover until later.

We didn't look at her portal for 2 yrs b/c this particular hospital sucks. I try to avoid them, if at all possible.
Looking at you, MaineGeneral Medical Center @MaineDoctors.

They also happen to be closest to us, so her recent ER visit for a GI bleed happened there. 🙄

Scenario: Blood in stool. Low hemoglobin/hematocrit. CT showed blood in stomach. Thought might be month-old Eliquis script. Took her off it. Did endoscopy/colonscopy. Couldn't find bleed. But her numbers stabilized low. Hemoglobin in 7s. Above 12 is normal! No transfusion.

Hemoglobin did hit 8s. So they...

PUT HER BACK ON THE BLOOD THINNER! 😱

and sent her home to follow up with PCP/cardio. She has AFib, but had trouble stabilizing with coumadin. Now she's had a GI bleed with Eliquis. Does she need a fucking blood thinner? No one has looked.

MaineGeneral ER didn't even initiate talking to her cardiologist. I brought that up. They just failed to either find or fix the problem and sent her home in the exact same state that caused the bleed.

Seriously. Fucking scariest hospital in Maine. Don't go there.

Also, who wants to go on a massive health freak kick with me? And by this, I mean healthy as you define it. No one else's frigging rules, just ones you want for you.

But we all gotta do something ourselves, b/c this is "standard of care." And it's damaging/killing people.

Standard of Care says that, if you have AFib, you get a blood thinner. Boom! Done. Cheap, quick, & Big Pharma is happy.

There are tests they can do to check clotting. We all know this from COVID. Fibrinogen? D dimer? There's the thromboelastography test. Why not check? $

Even in a proven "bleeder," SOC prevails. No thought required.

Now cardio is thinking of a Watchman implant procedure. 🙄 Again... Does 👏 She 👏 Fucking 👏 Need 👏 This? 👏

I'm guessing probably not. So now I have to arrange to be there, as she won't go against a doctor.

Honestly? I'm not even sure it's standard practice to check an INR BEFORE you add a blood thinner. I've never seen it done. My husband has/had AFib, too.