Moms Are Medicine, Patients Are Providers (Results from Mayo)

 I don't like world class name brand hospital systems as a general rule. I have one in my backyard. They do a lot of advertising. And they treat their patients like shit. Plus, they're the most expensive system in the area and they have the most predatory financial practices.

Within the local community, I'd say there's an 80/20 split (Note: among those who talk about it). 80% of us avoid this system. 20% have a good experience. You'd never know that so many locals avoided this place from the ads though. You'd think I was bananas all by myself. Well apparently there's a bunch of us (ba dum bum...I'll be here all week).

So naturally my kid's blood went to Mayo and what did Mayo do?


The wrong test.

The completely wrong test.

Am I surprised? Nope.

Mayo is the same flavor of PR medicine as the place here. It's all an act.

Anyone who wants to go to Mayo or wherever for their health, get into the patient groups and find out if the place is any good for your situation. You have the ability to find the actual good doctors and good clinics now. Don't listen to the PR, listen to the patients.

I didn't see the Mayo results until we were at the follow up appointment and the teen asked me if they'd come in while we were waiting for them to call us back. So I checked the system and found them a few minutes before we saw the doctor aaaaand they were normal. My heart sank. We had a ton of abnormal results from the other labs, but Mayo was supposed to be the super specific test. And it was normal. Another dead end. No answers yet again.

I did notice a lot of language around cancer and leukemia in the results, though which I thought was weird.

Turns out, they tested the teen for cancer by mistake. With super specialized lab stuff that most hospitals (apparently) don't have. A total waste of time and equipment. Thanks Mayo!

But I'm pleased to say, there's no sign of cancer.

However, the rest of the labs were "so severely abnormal" per the specialist that we do now have an initial diagnosis. We'll repeat the Mayo lab later this year and see if it adds any clarity...potentially it could change the diagnosis as we'll have more precise data.

I know you may be wondering what it was, but I'm going to sit with this a bit and think about what I want to say and where the line is on privacy for my kid on this. Unfortunately, it's rare and that means it's identifying so I have to think about navigating that. Also, I'm still absorbing this, taking it all in. And again, it may change materially as we finally get the Mayo testing done. I don't want to jump the gun either.

But this definitely plays into all the issues the teen has been having. It likely explains some of the long covid symptoms, why the Lyme was so hard on her. Her underlying system is malfunctioning and it makes her vulnerable.

I also still have the same questions from my previous post...

Why is a random mom the one figuring this out?

Why is it ME, another random mom, pushing the doctors to see what is obvious to those of us without medical degrees?

Why is it patients helping us with the nuances? Helping us navigate the science?

Why don't doctors think deeply and broadly enough? Why is the cross specialty functionality so poor? This is a consistent issue. It shouldn't be my brain or my friends' brains putting the puzzle together...it should be theirs. Silo-ing the science and writing patients off as young/anxious/female/fat isn't effective no matter how nice they are about it (which 90% of the teen's docs have been sincere and well intentioned, but that, unfortunately, doesn't have any correlation with diagnostic accuracy. Nor does the inverse...rude, abrasive doctors aren't any better at figuring stuff out either. You know what gets to the diagnosis? Testing and imaging.)

Why does the diagnostic process take years when the tests with the longest lead times take a few months tops and most take way less? We could have data on pretty much anything from a few hours to a few months. Meanwhile rare and chronic disease patients are still suffering for years, if not decades, before they get diagnosed. You know what gets to the diagnosis faster? Testing and imaging faster. 

The excessively long timeline isn't from the testing. It's from the doctors. It's from the insurance company. It's systemic. It's on purpose. It's a decision that patients weren't informed about and didn't consent to. It's harming patients and yet, no one blinks. No one fucking blinks. 

This has to change. Yesterday. It's unacceptable.

Do you know what I see doctors doing online though? They are either bitching about patients, insisting that they are dumb/fat/anxious OR hawking their own medical products in an effort to monetize the systemic medical neglect. I have yet to find any discourse about fixing the diagnostic delays or cognitive errors. If a patient dares to do imaging or testing out of pocket...the doctors online denigrate that patient like fucking piranhas. They're shameless.

Now, all that said, my kid was a tough case. The initial symptoms manifested in the body system that wasn't causing the problem so we ended up in all the wrong specialties and then the big clue was easily dismissed because of a major default bias across society, not just medicine. So most of medicine gets a pass from me on this one.

I'm just irritated by how often I find a complete lack of true expertise and strong lateral logic skills among care providers. How often they tell you you're fine when they can't even discern whether or not you should see someone from a different specialty. Like, all they know is the smooth walls of their windowless silo but they'll sit there and insist you're completely fine. 

I promise you, I'm stupid as fuck. I am nothing special. I'm lucky if I can find my pants. All I do is walk into rooms and forget why I'm there. Ever since, Covid, I have to use alarm reminders for everything because I've lost all sense of time. On the spectrum of cognitive function, I'm closer to dementia than I am to being Einstein. I literally ran around using the wrong medical term for the teen's stuff like a loon for weeks. 

Yet here I am with my mom friends and other patients getting it done when doctors can't.

Why are moms and patients outperforming doctors? 

If insurance companies figure out that the big costs they can cut are all the doctor visits and just let the patients have at the testing and imaging with no more harm than what they do now...what happens to medicine then?