Getting Kaiser Permanente to conduct a 2 day CPET- My Experience.

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Hope this is the right subforum to post this on!

Summary of Events:

I live in LA County and I have Kaiser. I went to a Cardiologist to discuss my POTS and ME/CFS care. I requested a two day CPET because of two reasons: it could inform my symptom management by giving me more exact pacing guidelines, and because those exact pacing guidelines are a documented limitation that will prove my inability to be able to work, thus giving me useful documentation for my ssdi case.

Cardiologist contacted the pulmonary department, pulled a few favors, got it ordered. I gave him a Workwell's Methodology Paper and asked him to please follow it.

Pulmonary Department conducted the two day CPET, not exactly using Workwell's Methodology. A respiratory therapist conducted the test, and two different MDs (who supervised the test) wrote a report, one for each day. The report gives some numbers from the test, but does not attempt to explain why I got these results, or how they impact me, or how these results could be used to inform my care.

Right after the second CPET, I received 1 L normal saline at a Kaiser facility.

A week later, I asked my cardiologist to set up an appointment with him or someone at the Pulmonary Department to discuss how these results would inform my symptom management. Cardiologist says "We did the reports so you could have the data." and basically says no interpretation of the results will be offered. He suggests I can consult the Workwell foundation and implies that Kaiser will not do anything more with these CPET results.

I now have some snazzy results, but I have no Kaiser doctors willing to tell me what my pacing guidelines are, presumably because they have no clue how to use the CPET results to create these guidelines.

The respiratory therapist I talked to was very kind, and said that he (and implied the whole department) was interested in helping me/cfs patients and being a part of their care. Said that they would welcome any me/cfs patient who got referred to their department.

So now I'm left with the following questions:

Am I a one-off occurrence? Can others get a two day CPET? Is this a start of Kaiser slightly improving their me/cfs care?

Can I get Kaiser to actually do the full job and learn how to take CPETS and turn them into useable pacing guidelines? How?

If I can't get Kaiser to do that, how do I turn these results into something powerful for my disability case? I'm willing to pay an outside doctor to generate a proper report, I just don't know who will do that. Workwell is happy to unofficially go over my results, but said they will not write a report using results not generated by their facilities.

Do I say the names of every Kaiser doctor involved here? Would this be helpful?

I can also post redacted versions of my test results, if that would be helpful? I only have partial data, the full raw data request is still being processed. And any question is welcome.
 

Pyrrhus

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Congratulations on persuading Kaiser to perform a 2-day CPET!
I don't think they would have been willing to do that just a few years ago.

And I am not surprised at all that they have no one to interpret it.
But that's better than someone trying to interpret it and screwing up royally.

A couple years ago Jeff Schwartz (@Webdog) campaigned for Kaiser to start treating ME patients.
He eventually got a meeting with a bigwig at Kaiser, named Dr. Steve Olson, who was surprisingly receptive to Jeff's ideas. Dr. Steve Olson started a process of educating Kaiser personnel in ME issues, which was a great turnaround for Kaiser. Then Dr. Steve Olson retired and the future of ME care at Kaiser is now uncertain.

I would let WorkWell unofficially explain the CPET results to you. Once you understand the results, you can then find some non-Kaiser doctor to write up an interpretation of the data. (maybe WorkWell can recommend a doctor)

Once you have the official interpretation of the data, take it back to the people at Kaiser and find a way to educate them so that they can learn how to interpret the data their selves.

That's my 2 cents!
 

Zebra

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Can I get Kaiser to actually do the full job and learn how to take CPETS and turn them into useable pacing guidelines? How?
I feel for you. My mom has a Kaiser Medicare Advantage plan and the quality of her "care" this year, even as an in-patient, in hospital, has been abysmal.

I recall reading about a particular KP doctor at Kaiser who claims to be interested in advocating for CFS/ME patients.

I'll include a relevant quote from the article as well as a link. Perhaps you can eventually get to him by phone?

"Dr. Olson is responsible for medical documentation and reporting, outside medical services, and benefit assessment and implementation. In the last year, he has taken on the role of assessing ME/CFS cases and gathering the resources needed to provide the right treatment plans for patients."

https://permanente.org/re-envisioning-treatment-plans-for-me-cfs/

Hope this might be a helpful point of entry for you.
 
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@Pyrrhus @Zebra

I very briefly was Dr. Olson's patient via telemedicine, after I asked my pcp to contact him directly and request an appointment. He knew me/cfs basics, but not much beyond that. He was mildly helpful by prescribing me ldn, assigning the dx of myalgic encephalamyelitis to my medical file (before, the dx was only cfs), and offering a small amount of disability documentation. He knew how to explain basic pacing techniques but I knew all that already. I believe he conducted some sort of me/cfs education effort directed at Norcal Kaiser doctors, which was small and not very detailed. I'm not sure about the specifics of this education effort.

He promised me my care would get transferred to a new me/cfs doctor, and then he retired/dissapeared and no one followed up with me! I think I should've been transferred to Dr. Zambrano or Dr. Champsi, who are two norcal docs newly assigned the title of me/cfs specialists. For more info on these docs you can refer to the Facebook group "Kaiser ME Neglect Movement" I'm not sure how much info I'm supposed to share outside that group. I guess I can say they appear to be of very limited help.

I am hugely thankful to Jeff Shwartz and other me/cfs advocates that have influenced Kaiser. I know Kaiser recently programmed in the option to be dxed with me instead of just cfs. And I know the wording on this page was recently updated (it even mentions a cpet!):

https://healthy.kaiserpermanente.or...itis-chronic-fatigue-syndrome.hw32907#aa25929

But Kaiser care is still abysmal. It's so soul-crushingly bad. My impression is that Dr. Steve Olson slightly nudged things along a little.
 

Learner1

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Any possibility of having the Kaiser doctors joining the Clinicians Coalition, or maybe heading on over to Mountain View to hang out at the Center for Complex Diseases or Florida to hang out with Nancy Klimas' group?