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.
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.