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So I had a visit with my DME yesterday
#11
Chill - A calibration check? Do these machines need to be recalibrated?? You'd think your AHI would help you calibrate it on a regular basis.... calibrate it to your body.

Marillion - If it could puncture a lung, I'm sure there would be some sort of warning *somewhere*. And, um, if a certain pressure could puncture a lung, I'm pretty sure they wouldn't allow the machine to get to that pressure *at all, ever*.

Oy.

Good for you. You're doing it right. And way to keep them on their toes.

This reminds me of something that I learned while pregnant, and my OB was lying to me to get me to admit myself to be induced or get a c-section. I learned that [some?] doctors receive education/training that it is the only right thing to do, to lie to their patients, if it can manipulate the patient into making the choice that the dr believes is the best/safest for that patient's health. <sigh> Informed consent, and patient "care", is out the window these days.
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#12
A ruptured lung is nothing. watch out, it's about to explode and bring the house down.

from another post.
[Image: attachment.php?aid=197]
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#13
@Marillion My DME is CoastalSleep.  I've been very happy with my therapist.  She has been very supportive and there were no problems exchanging a few (!) machines that I though were defective in some small way.

@Hydrangea Yes, it is possible for them to go out of calibration (the pressure maintained does not match what is displayed / recorded).  I doubt this is very common, more just a preventative service they provide and a bit of a reason to come in and get some fresh supplies.
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#14
Thanks guys and Gal! Much appreciated.
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#15
Good to hear the options and choices you people get, all that is available to us is take it or leave it and don't complain.

Complain and they suggest you might like to take your business elsewhere.
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#16
Marillion, I had the same sort of experience. Local DME saw me as a profit first.

I am a UARS patient on CPAP...I had a high rest disruption index (~60/hr), but barely qualified as having sleep apnea (6 events/hr)...that's the nature of UARS, you wake up before you register an event. The DME set me up with my machine, let me try a handful of masks and then, once I was into "steady state" treatment, just looked at AHI and compliance numbers. To them, an AHI <5 was great (but to me, that still means ~50 rest disruptions / hr, which is crappy and leaves me feeling poorly in the morning).

I found this place and started working my way to finding out what works best for me (with my GP's blessing...she was more active in my CPAP therapy care than my DME was). My AHI came down to a decimal number (generally <0.2) which means I'm dealing with <2 rest disruptions per hour and I feel rested in the morning...that's the way it should be. The DME didn't even register that my pressure had changed significantly...they were just pleased as punch by how well they had done in treating me. I finally got tired of their billing fiascos and found another DME.

When I went into the 2nd DME and met my respiratory therapist, I told him I would be both his best and worst patient. Best because I was actively participating in my treatment and knowledgeable about what we were doing, but worst in that if he yanked my chain or if something wasn't working right, he'd hear about it. So far, we've got a great working relationship and it is wonderful that he respects my participation in getting the best treatment for me.

If Pacific is being a jerk (which it sounds like they are), then there are plenty of DMEs in the sea....or you can go it alone. The important thing (and what I've become an advocate for) is that you, the patient, are getting the best possible treatment for you, rather than just something "acceptable" to the DME and insurance company. After all, you have to live with the results of therapy daily, so you have a far greater vested interested (more than a few $$'s) in getting it right. Don't take guff from the DME and don't believe the scare tactics they use to try to get you doing what they want (and earning them profit when it may or may not be of benefit to your treatment).
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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#17
(04-11-2017, 12:17 PM)Marillion Wrote: It's times like these that make me so thankful to have found this board.  I met with my DME for my one month compliance discussion about 45 days in (no problems with compliance or the AHI numbers)  A lot of interesting topics came up.  They expressed surprise that I was adjusting my own settings on my machine and strongly warned me against it.  "We've had people puncture their lung by using the wrong pressure for them because they adjusted their own settings..."  me "Really?  That doesn't sound very plausible without some kind of underlying medical condition...but even so it sounds a bit hard to believe."  They insisted it was true and that they are the experts who have all the education and know what the settings should be for each patient.  Then they said they are making a not in my file that I am making my own adjustments.  I said,  "Go ahead, the AHI numbers and my own well rested state speaks for itself." 

Then they proceeded to explain that someone that has an AHI of 68 might only be able to achieve a 10 AHI as a best score and they are ok with that kind of a number.  I told them in no uncertain terms that a 10 is not really acceptable and that you could do way better.  They then explained not to chase the numbers as it is more important how you feel in the morning.  I guess I had to agree with that.  So we left the topic. 

Then, they started taking me to task about the amount of masks I have tried (5) in my 70 days that I have been on CPAP.  I then explained that you need to try different masks early on when you are first starting out to figure out what works for you...  They seemed to agree but then told me I will only be able to try the F20 I have been waiting for, for weeks now for only 1 week.  I asked why it can't be for a month as usual for mask trials? They said they are not obligated to let me try any more masks since my insurance provider has already paid for my P10 mask and they only pay for one mask.  Then they told me if I want to buy the F20 it would cost me $350.  I chuckled and told them I could get it for way cheaper than that online from a Canadian vendor.  Surprisingly, they still agreed to let me trial the mask.  Needless to say I will be returning it after the week.

Overall, not a hugely positive experience and it re-iterates why forums like these are necessary for those of us that want control over our treatment and the best possible outcome for ourselves.  Hopefully I won't have to have much more contact with them in the future.  I need to look into whether I would be allowed to make my own purchases to replenish my supplies as needed by my insurance (Pacific Blue Cross.)  I would rather replenish my own supplies and not have contact with this company any more.

the experience with my DME has been negative and counterproductive

they dont care crap about me just talking me into using a failed device for 4 hours a night so they can keep getting paid for it
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#18
Thanks Mike. Also thanks for sharing your experiences. I will be changing my DME shortly or possibly going it alone for sure. An interesting side note I just found out, the original gentleman that I saw when I first went to visit the DME location has left his job there. He felt it was a bad environment and that he could do better setting up his own DME practice.

I found him to be very knowledgeable and patient as well as responsive to all my questions. He never once questioned why I wanted to try "so many different masks" (5.) The company leaned on him to not let me try any more masks and for the candid advice he gave people that he saw. Because he didn't deal with people the way they wanted him to, they leaned on him really hard. So he left. Good for him.
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#19
(04-12-2017, 11:46 AM)Marillion Wrote: Thanks Mike.  Also thanks for sharing your experiences.  I will be changing my DME shortly or possibly going it alone for sure.  An interesting side note I just found out, the original gentleman that I saw when I first went to visit the DME location has left his job there.  He felt it was a bad environment and that he could do better setting up his own DME practice.  

I found him to be very knowledgeable and patient as well as responsive to all my questions.  He never once questioned why I wanted to try "so many different masks" (5.)  The company leaned on him to not let me try any more masks and for the candid advice he gave people that he saw.  Because he didn't deal with people the way they wanted him to, they leaned on him really hard.  So he left.  Good for him.

If he's setting up his own shop and has his head screwed on right (which it sounds like he does), you may have found your next DME :Smile My original DME went through a dozen RT's in the time I was there...had I known better, I would have seen that this is a warning sign about the corporate attitude. Good shops looking after their employees and actually helping their customers will get good business while the poor shops are out to make a buck when you don't know better yet (i.e. machine sale and initial compliance period).

It's unfortunate that far too many DMEs are of the latter type...profits before people. It also sucks that there seems to be a decided effort out there by manufacturers, doctors, DMEs and RTs to keep CPAP patients in the dark about their therapy (what is often called the "medical mafia" on this site).

Hang in there, Marillion and whatever way you go, do what's best for you and your therapy Smile
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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#20
That is exciting, about following that guy who is making his own DME shop!!! Sounds like a quality guy.

I recently called my current DME to ask some questions about various masks and such. The guy on the phone said "I noticed you were with xyz sleep dr/DME. What did you think of them?" While not the most professional thing to ask, I didn't mind, so I responded and asked him why does he ask. He said he used to work for them, so I asked if my comments rang true to him, and he said yes and that's why he switched to my current DME. So... that's kinda cool.
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