My sleep doctor fired me.
He sent me a letter, by certified mail, saying he was "withdrawing from therapy."
The main reason was that I had demanded he allow me to get a ResMed S9 AutoSet. His sleep mill "just didn't do that".
Well I got one anyway. A used one for only $225 after trading in my brick.
You see, I have a functioning brain, and was able to figure out -- all by myself -- that there is significant variation in my apneas. It follows that I may need a different pressure every night -- and in fact, I do. The 7 pressure level Rx from my test was just that -- the right pressure for that night in that lab with wires taped to me. (Actually, even that's not true -- their dated equipment could only titrate to whole numbers. The AutoSet does increments of 0.2.).
I'm now sleeping better than ever, because my required pressure actually can go as high as 12. It's usually 7.6. But -- and this may be key -- much of the night, it only requires 4. Plus now that I have actual data every night, I know I am getting the right pressure (total AHI is 0.3 a 1.3).
Doctor Knowitall is not the only sleep doc out there holding up a garlic cross to the dreaded APAP. There's a bunch. What is their problem exactly?
Methinks it's an aversion to the possibility of patients cancelling their $100 lectures (er ... appointments) in favor of letting their oen machines make the necessary adjustments. Why pay for state-of-the-art when you can pay much more for your sleep doc and his educated guesses?
Insurance companies don't like APAP because it's expensive, though I'm wondering why they think doctor visits are cheaper long run.
And yes, I know about the APAP studies that show they don't produce better health outcomes. (They DO, however, demonstrate a significant reduction in AHI.). Are you aware of studies that show CPAP in general doesn't produce much benefit long-term? Proving the ultimate health benefit of anything is pretty much the hardest goal of any study because there are so many variables. (Like ... um ... compliance.).
But there's this thing called common sense, and it tells you that adjusting treatment according to your current condition is better than picking one (somewhat arbitrary) number and trying to adjust it monthly based on guesses.
I'll stick with APAP, and hope that one day when the Flat Earth Society disbands they will, too.
It's GREAT to hear that you found an APAP, I used a brick for a couple years or so, 'till I started reading on this forum and discovered the advantages of the APAP machines and I've been much happier since I got mine.
Great post, thank you.
(03-24-2014, 04:48 PM)Tabbycat Wrote: Insurance companies don't like APAP because it's expensive, though I'm wondering why they think doctor visits are cheaper long run.
Insurance pay by a billing code E0601 the same amount for a brick or top end machines
Both machine record compliance, they only care about compliance are met to pay for the machine or not paying if compliance are not met
Find yourself another doctor, this doctor clearly demonstrate incompetence and need to go back medical school for a refresher course
Good one Tabbycat. What a complete moron of a Doctor.
You did the right thing, he did the wrong thing.
Glad you are feeling so much better, I hope you find a decent new Doctor.
Tabbycat, I had the same experience with my sleep doctor. He prescribed a pressure of 4 with my S9 autoset feature disabled. When I asked him to allow my DME to enable the autoset feature he refused. He said I should stay with a straight CPAP set at a pressure of 4 for at least 90 days. So I went around him, enabled the autoset, set the pressure range at 8/16 and am now cruising along with an average pressure of 10.37 and a 95% pressure of 13. You are so right!
03-25-2014, 06:57 AM
(This post was last modified: 03-25-2014, 06:58 AM by me50.)
This is some of the things I was told by an RT when looking at my data for a week (at his request):
"The events on the 27th were too far apart for the machine to register the need for higher pressure. It takes more than one single event spaced out over a long time frame for the equipment to respond. The auto machines are designed to attempt to learn your breathing and make its’ pressure changes accordingly but then again they are just machines and they are not perfect. Which is why your pressures go up then down then up then down all night long. Ideally this is why auto machines aren’t prescribed."
(03-25-2014, 06:19 AM)JimZZZ Wrote: Tabbycat, I had the same experience with my sleep doctor. He prescribed a pressure of 4 with my S9 autoset feature disabled. When I asked him to allow my DME to enable the autoset feature he refused. He said I should stay with a straight CPAP set at a pressure of 4 for at least 90 days. So I went around him, enabled the autoset, set the pressure range at 8/16 and am now cruising along with an average pressure of 10.37 and a 95% pressure of 13. You are so right!
With the discussion in the "Aerophagia" thread, you should probably lower your pressures considerably if you think you are having aerophagia-related problems -- perhaps your doc was right, and you need more time to adjust to the higher pressures?
03-25-2014, 08:58 AM
(This post was last modified: 03-25-2014, 09:08 AM by herbm.)
Good for you.
I have a really good (for me) sleep doc, but that mere fact that he was guessing at a setting based on a failed sleep study titration (I didn't sleep during that portion) and it would be three weeks before he would even see the data meant at least another 3 weeks before effective treatment would start.
The general advice to "wait a week" after making a change is generally good because you "can't base anything on one night's data".
Notice however that in the beginning the settings MUST be made based on "one night" at the sleep lab, and usually not even a full night or a typical night's sleep.
All such titration studies give is a rough starting point AT BEST.
In the first few days or weeks, it MAY make more sense to make fairly frequent adjustments, and this is what the machines actually do when they are "auto-seeking" for the correct pressure at during the night.
It took me about 1 WEEK to get my settings basically correct -- and that was with 6 changes over the 7 days.
I could have waited 7 weeks for this doing it on my own and waiting a week in between, or I could have waited (at least) 21 weeks for this by visiting the sleep doc every 3 weeks.
Truth is, it would never have been set this well (except by blind luck) since the sleep doc would only have expected to see me ever few months or even once per year after getting the settings close to correct.
We see our data EVERY DAY if we have the technical skill to view and understand it or to get help (here) in understanding it.
Docs see it at monthly or longer intervals.
What am I saying about short term changes? In the beginning, it can make sense to make the changes fairly frequently with the analogy to carving (in wood or other material): At first you take off large amounts of material, and later you make very small changes, inspect carefully and proceed.
Getting the generally correct settings can be done quickly based on just one or two nights data.
Fine tuning requires enough nights' data to allow the natural fluctuations to average out.
My sleep doc either was unconcerned about *MY* changes to the machine or so out of the loop that he never realized the settings were not *his* settings when he review my (excellent) results with me.
It also made the visit easy since we didn't need to argue about my "tinkering", but it was surprising that he didn't seem to notice or else did not care that the settings were RADICALLY different than he had specified.
This is not rocket science but my suspicion is that the sleep docs know less about setting any particular machine type than the top posters here who own that machine type.
They probably just don't study this in depth during their training (this was part of the reason that I earlier was seeking the "professional source material" they use in training -- I found nothing that gave them detailed instructions for making such settings.)
They also don't have time for perusing (e.g., studying in depth) each patients data and just make quick somewhat educated guestimates.
Sleep docs probably are best at picking the RIGHT TYPE of machine for people with complex apneas.
Sleep study AHI: 49 RDI: 60 -- APAP 10-11 w/AHI: 1.5 avg for 7-days (up due likely to hip replacement recovery)
"We can all breathe together or we will all suffocate alone."
I've found that some Sleep docs and DME's are more concerned about the cash flow. They will give you the cheapest thing that meets the prescription and will verify compliance so that they can maximize the money in from the flat rate paid by insurance. The consult is minimal at best and they basically throw a pressure brick and mask at you saying "use this."
I've found others have a "god complex." They are right and know better so don't you dare ask for something else or to change your pressure.
Personally, I think it is important to have a good relationship (if possible) with your DME and sleep doc or be willing to find one that you can work with. You have to be proactive with your health (it is YOUR health after all) and be able to make a logical and sound argument for what you want to do. If the Doc or DME actually cares about your health (and not their profit) then they should listen and be willing to work with you if you put a decent case forward.
Tabby, I would personally say "good riddance" to the Doc who withdrew his service...many more fish in the sea, as the saying goes. Find one that still values the human part of their practice and listens to your concerns instead of seeing you as a paycheque.
(03-25-2014, 08:58 AM)herbm Wrote: In the first few days or weeks, it MAY make more sense to make fairly frequent adjustments, and this is what the machines actually do when they are "auto-seeking" for the correct pressure at during the night.
It took me about 1 WEEK to get my settings basically correct -- and that was with 6 changes over the 7 days.
And I must greatly disagree with your method. There are just far too many variables for such advice to fit everyone. Did it fit you or were you just lucky? Who knows. When someone starts using a CPAP for the first time, the body and brain have to make a lot of adjustments. To keep changing the pressure each night over the span of just a week is not a good idea. I do agree, however, that when it is obvious a pressure is not working, that after three nights of the same results, a change is warranted, but not based on one night.
Yes, our sleep docs base our therapies on one lousy night at a sleep clinic. And they almost always get it wrong. We aim to be better than that.
This is what APAPs should be the only machine given. Set a range, determine the best pressure, and either go with a range or go with a set pressure. Best of both worlds. The algorithms that go into making APAPs work have changed a lot in recent years. Any sleep doc or RT who doesn't know this is not keeping up with their field of expertise. It would be like a mechanic still not trusting a fuel injection system and only working with cars that had a carburetor.
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