Preparing for Kaiser Follow-Up Visit

[Tunapalooza]

I switched to Kaiser a about a year ago after about six years with a non-Kaiser sleep doctor. I have been completely underwhelmed by the personnel at the sleep clinic I attend. I have a follow-up appointment this week and I need a reality check from folks here before I get hand waving and a brush off from Kaiser. The bottom line is that my sleep apnea is not well controlled. At least two mornings a week, sometimes more, I awake groggy with a mild headache and am tired all day. Here are my averages for the last two weeks:

AHI=8.04
CA=2.64
OA=1.17
H=4.23

Not every evening looks the same, but here is a typical dataset for an unrestful sleep:


Is it unreasonable of me to expect an average AHI below 5.0? What should I be asking/telling the therapists at Kaiser when I see them on Tuesday? Thanks in advance.

Marc

[Pugsy]

I would be asking about maybe doing an increase in the minimum pressure because it isn't doing a good job preventing even the snores.
There's a good chance that if the snores and obstructive type of events (hyponeas and OAs) are reduced that your sleep quality should improve.
Your report screams out poor sleep quality to me from suboptimal therapy.
Maybe something as little as a 1 cm increase in that minimum.

[kaiasgram]

I would also suggest you bring in your SD card from the machine (you're probably already planning to do that), because some docs won't look seriously at SleepyHead printouts.

[Julie]

What mask do you use and how's your leak rate?

[Tunapalooza]

What mask do you use and how's your leak rate?

I use a Mirage FX nasal mask. Here is the leak graph corresponding to the data above.

[pdeli]

Marc,

I too have Kaiser and I have some very definite opinions in this regard.

Generally I personally think that, at least here in Northern CA Kaiser does a pretty good job. (Personal opinion, no arguments please.) The problem however in the sleep lab area I think, is that there are so many people with this issue that in the end it just becomes a "mill" operation. All the the people there are very nice (with one possible exception) , but they are just simply overwhelmed and understaffed. Maybe newer facilities have more room and more staff, but for us it's a pretty slow and tedious process.

At the risk of being overly sympathetic to their problems, I can't imagine how any of the staff can possibly take all the time needed to show us how to unravel all this crap.

My primary complaint would be that they should provide us with an well-organized tutorial of sorts to help us get through the maze of information that confront. Not just a few handouts, but a real effective way to figure things out. Now maybe I'm naive here, but so be it. Under the present circumstances, I can certainly understand why the failure rate here is so high.

In my own case however, I've been reasonably successful in both speeding up the process, and ultimately getting a 45 min face-to-face wjth an actual Doc in a couple of weeks. My present plan is to have him review and interpret my Sleepyhead data.

If any of this sounds like you might want to hear more, get back to me rather than have me go into any additional unnecessary details here.

Phil

[sleepy1235]

My AHI is 2 or less. I have one or two incidents of all types per night.

I don't think it is unreasonable to expect a lower rate.

Also, it is not unreasonable in general to want to feel well.

Also, it is not unreasonable to improve your situation.

As for Kaiser, I think that these large organizations are just processing people through and you will have to be aggressive and take charge of your own health.

They probably will want to do another sleep study instead of just upping your pressure. They need to keep the cash flow coming for the sleep centers and staff.

I recommend having an oximeter. I will cost about $1200 to $1500, but you won't need your overworked health care doctor anymore.

[Julie]

Nonsense! You can get an oximeter from the PulseOx Store for a $150 - the 50D Plus (and the plus is important).

[LSAT]

My AHI is 2 or less. I have one or two incidents of all types per night.

I don't think it is unreasonable to expect a lower rate.

Also, it is not unreasonable in general to want to feel well.

Also, it is not unreasonable to improve your situation.

As for Kaiser, I think that these large organizations are just processing people through and you will have to be aggressive and take charge of your own health.

They probably will want to do another sleep study instead of just upping your pressure. They need to keep the cash flow coming for the sleep centers and staff.

I recommend having an oximeter. I will cost about $1200 to $1500, but you won't need your overworked health care doctor anymore.

Just a comment...If your AHI is 2 and you sleep 7-8 hours a night, you will have a total of 14-16 events a night. That's 2 per hour.

[Janknitz]

My primary complaint would be that they should provide us with an well-organized tutorial of sorts to help us get through the maze of information that confront. Not just a few handouts, but a real effective way to figure things out. Now maybe I'm naive here, but so be it. Under the present circumstances, I can certainly understand why the failure rate here is so high.

My Northern California kaiser requires you to attend FOUR HOURS of patient Ed to receive a machine. Two hour class on OSA to get a home testing device and two more hours to be fitted with a mask and titration device. Then an individual followup appointment. That's far more than most people ever receive.

They probably will want to do another sleep study instead of just upping your pressure. They need to keep the cash flow coming for the sleep centers and staff.

Kaiser, being both the insurer and the provider, doesn't work that way. They LOSE money if you have another study. So they are smart enough to furnish everyone with a data capable machine (at least in my region) and they just look at the data.

I'm not Kaisers biggest fan, but I think their approach in this is pretty sensible as it does permit them to "process large numbers of people" efficiently and effectively. They have a stake in treating sleep apnea because it saves them money by preventing more serious long term problems from untreated sleep apnea.

[kaiasgram]

I'm not Kaisers biggest fan, but I think their approach in this is pretty sensible as it does permit them to "process large numbers of people" efficiently and effectively.

I think the tradeoff of being able to process larger numbers of patients "efficiently" the way Kaiser does may also result in a larger numbers of patients who get lost in the system and quickly become 'noncompliant' due to lack of the help many need in the early phase of PAP therapy. So I'm not sure it ends up being "effective" in that sense. I'd be curious if the assembly line approach (whether Kaiser or elsewhere) results in lower percentages of successful users than centers where patients are seen individually and given more instruction and support.

At the Sacramento Kaiser you will not see a sleep medicine doctor through the entire diagnostic/titration process unless there's some unusual circumstance. You will not even spend one-on-one time with a respiratory therapist -- again, unless there's something unusual going on. At my appointment to pick up the APAP for the titration week, I was handed a nasal mask, no other option, and told "you'll get used to it." They gave me the blower only, no humidifier. No showing me the comfort features of the machine (ramp, EPR) that I could work with at home. When this is a new patient's introduction to PAP, it's almost an invitation to fail. I didn't fail, but only because of this forum and Jason over at freecpapadvice.com.

[Janknitz]

I think the tradeoff of being able to process larger numbers of patients "efficiently" the way Kaiser does may also result in a larger numbers of patients who get lost in the system and quickly become 'noncompliant' due to lack of the help many need in the early phase of PAP therapy. So I'm not sure it ends up being "effective" in that sense. I'd be curious if the assembly line approach (whether Kaiser or elsewhere) results in lower percentages of successful users than centers where patients are seen individually and given more instruction and support.

At the Sacramento Kaiser you will not see a sleep medicine doctor through the entire diagnostic/titration process unless there's some unusual circumstance. You will not even spend one-on-one time with a respiratory therapist -- again, unless there's something unusual going on. At my appointment to pick up the APAP for the titration week, I was handed a nasal mask, no other option, and told "you'll get used to it." They gave me the blower only, no humidifier. No showing me the comfort features of the machine (ramp, EPR) that I could work with at home. When this is a new patient's introduction to PAP, it's almost an invitation to fail. I didn't fail, but only because of this forum.

I have never YET (more than 3 years into my therapy) seen a sleep medicine doctor. From what I read about other's here who have had to meet with the sleep doctor, it doesn't seem like any great loss. It's rare that a sleep medicine doctor is helpful at all with the nitty gritty of using a CPAP machine. Most people are told simply to "use the machine" regardless of any issues they may have with it.

Here in Santa Rosa, the sleep techs have been very good about fitting the mask to the person and not simply handing you one and telling you to get used to it. I've been able to call them (or email, which I love) if I'm having a problem and go in for a fitting. It's a poor fitting in that it's done sitting up, but at least they will try multiple masks and give you the samples to take home to see if it works for you in real life before changing your prescription (Kaiser requires that the specific mask be prescribed because they are also the DME--Crapria is merely the supplier).

They don't give you the humidifier during the week long titration (they claim they are too difficult to clean) and that is brutal for a lot of people. My sinuses really suffered until I read here some tips like using saline spray before bed. I was taught to use the ramp button during the titration if I woke in the middle of the night with a hurricane force blowing at my face, but told NOT to touch the other buttons because it was a titration, not treatment at that point. And the sleep lab techs pointed me to THIS forum for additional help, in addition to being ready and willing to answer my questions if I contacted them by email.

Personally I think that my local Kaiser, at least gives more support than most non-Kaiser people ever get between the hours of patient education and sleep tech support. I suspect Kaiser success rates with CPAP may be HIGHER than most.

Perhaps where your Kaiser failed was in instructing people to contact the sleep techs if more support was needed. But Kaisgram is also from Sacto, and had similar difficulties up there. So perhaps not. Keep in mind that if you are in the Northern California system, you can get your care from ANY Kaiser in the region, so it may be worth a trip to Santa Rosa.

[Tunapalooza]

I got off to a bad start with Kaiser (Richmond). At my first appointment, I brought them the SD card from my older machine. It provided an extensive data set showing an AHI above 5. (Not sure how much data is stored, but I had been using that Respironics APAP machine for about three years.) The first thing Kaiser wanted to do was an "at home" sleep study with an Itamar "wristwatch" device without using my machine. I questioned the wisdom of having me go off the machine since it was self-evident from the data I provided that I suffered from sleep apnea.(AHI>5 with treatment = ??? w/o treatment?) They didn't have to believe me when I told them that I had been on a machine for over six years. I decided to be a compliant patient.

Well, my O2 dropped to 81%, I got no REM sleep and I was ill for a couple of days. My AHI was 80-something. The exercise was diagnostically unnecessary and medically unwise in my view. After two lab sleep studies and two different machines, you can see the results above. In contrast with my prior experience, the Kaiser techs seem rather clueless and are just winging it. At my last appointment, I was told that an AHI below 10 was acceptable since my apnea is severe. Perhaps that is true, but I'm not sure that I can take Kaiser's word for it.

Marc

[kaiasgram]

From what I read about other's here who have had to meet with the sleep doctor, it doesn't seem like any great loss. It's rare that a sleep medicine doctor is helpful at all with the nitty gritty of using a CPAP machine. Most people are told simply to "use the machine" regardless of any issues they may have with it.

That's a good point Jan. And as our two stories (and other Kaiser patients' stories) illustrate, all Kaiser facilities are not the same. When I called sleep medicine for help during my titration I was told by the person who answered the phone, "Just do the best you can." The RT never called me back or responded to my email request for help. I should have driven out to Santa Rosa.

BTW, you are the person who directed me to this forum after spotting me on another more restrictive forum back in 2012 when I was just diagnosed. Thank you sweetie!

[pdeli]

Marc,

As I previously indicated, I too have a Doc appointment coming up soon at the Sacramento Kaiser, and as you likely know, when you contact a Kaiser Doc, their name pops up on your "email my doctor" list. Even a phone appointment does that.

My current plan is to email the Doc in a day or so, and ask if he is familiar with SleepyHead, and if so, I would like him to review my laptop display, and explain my past couple of weeks data. I'm thinking this approach may work well, especially since he was the one who first told me about the fact that I could make my own changes to the settings.

There are a few unusual details that led up to my face-fo-face appointment, but they are not really relevant to this thread I think.

The most important preparation I think is to learn as much as possible beforehand so that you can follow and participate in the conversation. My past phone conversations pretty much started with my question, followed by his answer, followed by my "Oh", while I strained my brain for a follow up question.

This time I have a better grasp of things, and all I want to know is, what does this data mean, and how can I improve things, and how can I best deal with air in my stomach and dry mouth based on what's shown here.

I'm actually doing rather well generally I think, but I want to meet this guy since I've come this far in the process.

We'll see how it goes on 2/4.

Phil