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Trust issue with DME
#1
OK. Here's the deal. My PCP wrote me a prescription for a sleep study. Had it done, got the recommendations from the DME, my PCP signed the order for all the equipment. Now, a couple of months later, I am not happy with my cpap. Yes, it is a vast improvement over my sleep study results of 31+ per hour, but I have a lot of 8+ nights mixed in with 3-5 nights. I try to examine what I have done or not done that might make the difference but it seems random whether I have a good night or not. So I called the DME to ask about it--when I picked up my equipment, he said to "call anytime with questions" but in the two months there has been no followup--and after playing phone tag for a few days, I got in touch with him. First I tell him that my software shows too high an AHI and his first repsonse was "What software? That is probably illegal." I respond that no, it's a program written by someone who has made it available free (Sleepyhead) So he has never heard of Sleepyhead--which seems odd for someone who has been in this business for 15 years--and when I tell him I also have the ResMed software, he is very surprised and wants to know how I got it. Uh, from ResMed! Clearly he thinks I'm doing something shady by wanting to keep up with my numbers.

He finally asks what can he do for me and I say I'm thinking I might want to switch to an autoset machine. Well! He is stunned and shocked at this and says this is the strangest request he has ever received, never heard of such a thing! and why do I want the autoset. I reply that it seems as if it would be a good thing to have a machine that would respond to changing conditions to keep my AHI at or below normal levels. He says the only changing conditions might be my sleep position, but that in my sleep study I even had apneas on my side, so their prescribed pressure should be perfectly OK. He also ventured his opinion that an autoset machine might make things worse, because although it might keep the AHIs down, the changing pressures might make me wake up frequently.

Finally he said that if I got a doctor's order for an autoset, he would have to give me one, but it's going to cost him a lot of money because my current machine would be worth zero to him, and also that even if he were to give me an autoset machine, he couldn't set the pressures without a prescription. Of course, my PCP could write an order for an autoset, but as for the pressure levels, he just rubber-stamped what the sleep clinic people had as their findings, since he has no way of knowing what my pressure should be. The DME said maybe I should make an appt. with the sleep doctor that is associated with their clinic (whom I have never once seen, of course) and see if they recommend a change. He also wants me to send him (the DME) my card so he can get the data off it in case Sleepyhead is wrong. I asked if I should take the card when I see the sleep doctor, but he said they would just send it to him to read anyway.

So now, I feel like I don't trust anything the guy has to say and I worry that the sleep doctor will just tell me whatever the DME wants him to tell me. I'm quite sure my PCP would write an order for the new machine, but then how would I set the pressures?

Oh, and the DME also told me that he would (reluctantly) trade the machine for me, but after that I would have to go to a different provider because he can't keep "doing that" whatever that means. Basically he is telling me I'm a thief of software and now trying to "steal" a new machine from him.

Oh, forgot that the DME also said that my numbers (8 and above) are still a lot better than before my sleep study. Well, yes, but is it too much to ask to have them in the normal range????

Advice?
Kathi D.
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#2
Your using the Sleepyhead software is just fine, and in fact a desireable thing for a patient to do. Using the Resmed software is also fine, but it does provide the techies with an out in that it is not supposed to be available to the uneducated populus such as you or I. So talk with them about Sleepyhead and just leave it at that. They cannot legitimately find fault with that software.

It sounds to me like you need to call your pcp, and say something demanding like: "Hey doc, would you write me a new prescription for a Resmed S9 Autoset and my choice of mask? Also, you can just specify the pressure settings to be a low of say 9, and a high of say 14? That would be super. Thanks doc!" Then, take the prescription to the DME, after making copies of it perhaps, and say "Thanks so much for trading in my Escape for this machine, that's really lovely of you to do."

Get your new machine, go home, love life.
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#3
Retired guy is right on. He may have said it better thn I could have.
Take charge, get your new machine and love life.

After you have your new machine you can check with your insurance to get a list of in network DMEs and begin your search for an "honest" one. Good luck with that. Or maybe just take control and whip the current one into shape.
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#4
Call whoever wrote the original prescription and ask for a copy of it. Also ask for a copy of your sleep study report. If they say "It would all be gibberish to you" or "It's a large document", tell them you want the summary (there almost always is one). Be polite.

If the sleep doc is not willing to write the script for an APAP (many don't because, like the DME, they don't keep up with the research in their field of expertise). Then you can go to your regular doctor and ask for a prescription for it. It has to say auto-adjusting CPAP with humidification. Just go by what the sleep doc's script said. And make sure the script has the box checked "Dispense as written".

Most insurance companies go by the same codes Medicare has. And all CPAPs--for example the Escape, the Elite, the Escape Auto, and the Autoset--all have the same code. That means the supplier gets paid the same amount of money no matter which one he sells. So of course they're going to sell the Escapes because that means greater profit. That's why he doesn't want to trade in your Elite for the Autoset. He'll lose that profit.

Meanwhile, call your insurance and ask if they are renting the machine or if they bought it. Or check your statements. If they are renting it, then the DME guy can just shut the blank up and get you what you want. If they bought it, they probably are not going to want to buy another. In that case, you now have your prescription and can get your own machine online.

Supplier #2 (Supplier's list at top of every page) has used and open box CPAPs at decent prices. If you got the S9 Autoset, you could save money by getting just the blower unit and not the humidifer. The one from your Elite will fit it of course. Now you have a backup machine should you ever need one.
PaulaO2
Apnea Board Moderator
www.ApneaBoard.com


Breathe deeply and count to zen.

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.




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#5
Typical DME FUD. (They create Fear Uncertainty and Doubt.) They always react like you've done something illegal -- I am not a lawyer; but I say WRONG.
Your Elite is not worthless. They sanitize and resell machines. Supplier #2 makes a living off used machines.

As for changing pressures interrupting your sleep -- HAH. You fine tune it to run between upper and lower limits such that it responds to snore, obstruction and apnea. I run 4 cm of auto adjust latitude on my VPAP Auto.

Any doctor that's in bed with a DME should be avoided like the plaque.

Edit -- also: What Paula said! Ist sehr gut beraten.
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#6
Thank you for the voices of experience! It really makes me mad that it could be seen as WRONG that I am taking an interest in my own health and trying to take care of it as much as I can.

I am very leery of trusting the doctor affiliated with the DME now. I have copies of my sleep study report. Also, my insurance is paying for a "rent-to-own" plan which means I own the machine after 10 months. It has been just over two months now.

I was actually shocked at the DME's response that he had never gotten such a strange request before. It doesn't make sense that every single patient just has the sleep study, picks up the equipment the DME recommends, and goes home and lives happily ever after.

I am going to talk to my PCP and see about getting the prescription for the autoset machine. And if the DME wants to be rid of me after that, oh well. The only thing I worry a bit about is that they are the only ones in my area who do sleep studies, so if I have to have another of those for whatever reason, I will be at their mercy.
Kathi D.
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#7
(05-15-2014, 08:07 PM)kderevan Wrote: Thank you for the voices of experience! It really makes me mad that it could be seen as WRONG that I am taking an interest in my own health and trying to take care of it as much as I can.

With that attitude, and the machine you've got, there's a lot you can do. In fact, with the low pressure you've got, it's possible an Autoset won't be able to do much more for you than your current machine. Plus, it's not likely your insurance company will eat the cost so you'll have to press on with your DME to get the machines switched.

The three basics are compliance, leaks, and AHI.

Do you have a theory as to why your AHI is as high as 8 on some nights? Do your leak graphs show proof that you've got your leak rate under control? Is there a trend or indication in the OA, CA, and hypopnea indices?

The thing is, if you've been downloading your data you have access to far more of it than they can get off the card. Apart from what's happened in the last week, all they'll see is how much you've been using the machine.

You do use the machine whenever you're sleeping, right?

Does your sleep study report show any indication that you spent any time in the supine position?
Sleepster
Apnea Board Moderator
www.ApneaBoard.com


INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#8
Well, that's the thing. I can't figure out why some nights are good and some not. I have 100% compliance (except for a few nights recently when I was up all night with insomnia), leaks are always low (avg. around 3, 95% usually 10 or less). My average AHI over the entire period I've used CPAP is 5.30, which sounds not bad (and indeed it's a lot better than before CPAP) but that average includes a lot of highs and lows, and I can't figure out why one night is different from another. Most of my AHI's are obstructive. Last night's figures were .68 hypopnea, 4.35 obstructive, and .54 CA.

Maybe I'm hoping for the impossible, and should be happy with my overall 5+ average.
Kathi D.
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#9
(05-15-2014, 11:49 PM)kderevan Wrote: Well, that's the thing. I can't figure out why some nights are good and some not.
. . .
Maybe I'm hoping for the impossible, and should be happy with my overall 5+ average.

I would encourage you not to settle for where you are. I was having a similar experience in the 1st month or so - AHI was sometimes below 10, sometimes above, generally not close to the 5 target. After reading here how common it is that back-sleeping is bad for us apniacs, I started experimenting with means to avoid it. It turned out that my apnea is highly positional - 20 times higher supine versus non-supine. Now I wear something on my back to discourage rolling onto it, and my AHI is usually below 2 - last week's average is below 1.

I'm not suggesting that the same will work for you - only that there is an answer that you haven't discovered yet - so keep looking!

Good Luck
A.Becker
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#10
(05-15-2014, 11:11 PM)Sleepster Wrote:
(05-15-2014, 08:07 PM)kderevan Wrote: Thank you for the voices of experience! It really makes me mad that it could be seen as WRONG that I am taking an interest in my own health and trying to take care of it as much as I can.

With that attitude, and the machine you've got, there's a lot you can do. In fact, with the low pressure you've got, it's possible an Autoset won't be able to do much more for you than your current machine. Plus, it's not likely your insurance company will eat the cost so you'll have to press on with your DME to get the machines switched.

I don't consider a pressure of 11 to be "low". It's actually at a good range for APAP use since it has plenty of room on both sides to work with.

I look forward to seeing how the OP does with his APAP when/if he gets one.
PaulaO2
Apnea Board Moderator
www.ApneaBoard.com


Breathe deeply and count to zen.

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.




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