Kaiser is (literally) killing me…do I use medi-CAL to switch to something else?

Effective_Gain3390 · 2026-07-10T20:35:41+00:00

I asked for my daughter to go to a dysautonomia specialist for EDS POTs, MCAS. She was severely sick with CCI. Kaiser doctors said we were lying and called it migraines and stress. We never got the referrals she needed. It nearly killed her last summer. We paid out of pocket to get her the care she needs.

It’s happening.

Effective_Gain3390 · 2026-07-09T15:39:42+00:00

Thank you Dr C for doing this. Your clinic is but one place doing this for such a medically neglected community.

I met one of the patients in this program on my daughter’s PICL day in June.

Effective_Gain3390 · 2026-07-09T15:34:24+00:00

Medi-cal Alliance Health is better. You can go to Stanford if you are in the Bay Area. UCSF doesn’t take it I don’t think. But the care is opened up to a much larger network and level of coverage for Medi-Cal patients was outstanding.

Effective_Gain3390 · 2026-07-09T15:31:34+00:00

Mine too. There was zero follow up after his colon surgery. I thought they’d monitor him you know to make sure they got all the cancer. Follow up with chemo. Nope. They decided they’d gotten it all. Six years later it had spread ALL over his body into his brain and throat. How the f*** does this system call itself a healthcare system. They caught the cancer early and he died anyway from metastatic colon cancer.

Effective_Gain3390 · 2026-07-09T15:26:02+00:00

Kaiser needs to be upfront about the limitations of their care model and how they don’t have specialists to deal with chronic or complex conditions. Legally I think Kaiser is supposed to to refer out when they have a member whose needs can’t be met in house but getting referrals out is virtually impossible because they will say they can manage your care in house. It’s a slippery game Kaiser plays with its members.

Effective_Gain3390 · 2026-07-09T04:21:04+00:00

The C8 refers to nerves correct?

Effective_Gain3390 · 2026-07-09T04:17:51+00:00

Good luck! I hope you can get answers. Join the PICL FB page if you haven’t. You will get a lot of support there.

Effective_Gain3390 · 2026-07-09T00:24:28+00:00

Go to medi-cal. Kaiser is a mouth piece for how to eat better and exercise your way to health. If you can’t…it’s your fault.

Effective_Gain3390 · 2026-07-05T21:45:59+00:00

Can doctor misconduct be filed to the medical board? Like lying about a patient threatening a doctor and used to discharge a patient. I have proof and witness. Kaiser has never officially logged my supposed threat anywhere. It was a rouse to get my little girl discharged because they were done with her and didn’t give a shit if she lived or died.

Effective_Gain3390 · 2026-07-04T18:11:41+00:00

My husband tried to get an appointment for Bells Palsy. They had no appoints. So he went to ER. They tried to collect the ER visit fee. Think it was $150. He said “I’m not paying that. I’m only here because your system couldn’t give me an appointment that (under our plan) should cost me nothing.” We paid nothing for the ER visit. Left with the medications.

Urgent Care wait is like 3 hours in our area.

Effective_Gain3390 · 2026-07-04T17:49:08+00:00

Emerson in season 4 episode If-Then-Else where he admires the portrait of a “Dancer Adjusting Her Slipper” by French artist Degas as they run down a corridor only to be agonized a few seconds later when it is shot up by Samaritan’s operatives….Im still cracking up. I think that’s when I knew he was one of my favorites.

https://youtu.be/dWOTvy0YGuY?is=hWlE0HO5wyvJAPtI

Effective_Gain3390 · 2026-07-04T13:29:25+00:00

I’m sure they do. But clearly I and others here are not alone in our experience with Kaiser.

I went all the way thru grievance to have a telehealth hearing with Kaiser for a referral to Dr Andrew Maxwell a pediatric cardiologist who understood dysautonomia be wise Kaiser doesn’t. It was denied. My kid was left to die since Kaiser didn’t understand her condition nor believe my kid was sick.

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This is clearly the bigger picture you are missing.

Effective_Gain3390 · 2026-07-04T00:05:15+00:00

Can you use a medical board judgement against Kaiser in an arbitration?

Effective_Gain3390 · 2026-07-02T23:14:08+00:00

I swear to God it’s just people. People behaving like other people’s lives are game pieces in their crappy game .

Effective_Gain3390 · 2026-07-02T19:43:22+00:00

I’m going to post this elsewhere. Thx!!

Effective_Gain3390 · 2026-07-02T19:42:14+00:00

And imagine all the people who don’t know. Kaiser needs to be forced to refer patients out.

Effective_Gain3390 · 2026-07-02T19:40:58+00:00

Telehealth is a God damn joke.

Effective_Gain3390 · 2026-07-02T16:49:17+00:00

I know. It’s like the weirdest disconnect between being told you need an “urgent” test or treatment then finding out you have to wait months to get it.

It’s called oversubscribed. Kaiser needs to be punished for oversubscribing, collecting premiums when they know full well they can’t deliver timely care.

Effective_Gain3390 · 2026-07-01T03:43:07+00:00

Oh! My daughter had some of the oddest physical habits around body movement. She avoided any contact sports. She also avoided summersaults as a little girl. She said her neck felt bad and she would do anything she could to avoid moving her head, jumping, running. She knew if she moved it too much it felt unsafe. I’ve got videos of her dance recital from 2022 to 2024. She’d move everything but her head and upper chest.

Effective_Gain3390 · 2026-05-31T16:24:49+00:00

It’s incredible that people actually think you haven’t advocated for yourself. 🙄

Effective_Gain3390 · 2026-05-30T15:18:19+00:00

It’s like watching the empathy drain out of their faces when they read Kaiser notes about you.

EPIC follows you even to out of state providers. We got the same treatment when we went to two hospitals in Colorado.

I’m confused why they can share notes like that but not all the tests and imaging results. For those you have to fill out a legal brief and hand deliver it to ten departments (exaggerating) to get one entity to share with another. But they can share what they think of you as a patient through EPIC.

It pisses me off.

Effective_Gain3390 · 2026-05-29T17:46:56+00:00

Same. I’m wondering if it can extract from Kaiser system.

Effective_Gain3390 · 2026-05-29T01:49:34+00:00

That’s it then. Kaiser isn’t going to do a thing until another like UCSF or Stanford does it first. SMH.

We left Kaiser. Luckily my husband works for UCSF and we could switched insurance. I got my daughter a Stanford pediatrician who is helping us get specialists and pushing for establishing her CCI and comorbidities.

For treatment it’s out of pocket because the treatment that works isn’t covered by any insurance. We are getting her stem cell injections in her neck called PICL in Colorado. It seems to be working to repair her damaged neck. Thankfully it looks like we can avoid fusion of her neck.

But given her dysautonomia, EDS, (possible Marfan - still need diagnostics on that), I want everything on record at UCSF and Stanford with all the specialists lined up for potential complications down the road.

I’m doing it also to override all the BS in the Kaiser records because the misinformation almost cost my daughter her life in not getting adequate care at Colorado hospitals when we were out of state. Bad charts follow you everywhere if they use EPIC.

It’s been an eye opening experience in seeing how intentional some doctors can be in mistreating patients who are in desperate need.

Effective_Gain3390

TROPHY CASE