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Common Issues w/ CPAP Use?
#11
RE: Common Issues w/ CPAP Use?
(02-25-2018, 11:52 PM)Hydrangea Wrote: My biggest frustration is corruption with sleep "doctors", useless DMEs, and unhelpful insurance.  

I feel very much on my own.

To elaborate on this, and to concur with Kiwii, I want to add how very obvious it is that my sleep "doctor"/DME is only in it for the money.  His follow-up with me was to look at my memory card, see that I'm at an AHI to satisfy insurance, and then to kick me in the butt as I walked out his door.

I mentioned some discomforts to my sleep "doctor", and he literally said that since my AHI is satisfactory, then he refuses to change anything.  He would not move my fixed pressure of 5 any higher (to help me not feel like I was suffocating).  He would not prescribe me a heated tube (to alleviate rain-out).  I can't remember what else (I try to put negative behind me... and after I left him a scathing Yelp review, I have tried to forget all about it).

Since my sleep "doctor" was also my DME - which should be ILLEGAL - I also had to discuss machine "choices" (he made it clear there is NO choice), mask and tubing help (he refused to discuss it since my AHI is to his satisfaction), and other DME stuff with my sleep "doctor", and he was unwilling to even hear any of my issues since he already had from me what was needed in order for him to get $ from my insurance (both as a "doctor" AND as a DME).

I have since moved to a different state (on the opposite side of the country), and now I can't find a DME near me that will give me any supplies unless I go see a local sleep "doctor" for a prescription from this state. So I'm using a good DME I'd found in my previous state, right before I moved, and they are mailing me supplies.  This is a pain.  Right now I want to try some masks, but I don't have a DME I can go into and try them in person.  So I've been ordering supplies (out of pocket) online, so I can try things without trying to follow insurance rules of only one headgear per this many months, only this many mask cushion replacements per however often, etc.  Not to mention the pain of -oops- my out of state DME sent me the wrong mask that doesn't fit my face, so now I have to mail it back to them (after playing phone tag through different time zones), and then they can mail me the right one (hopefully).  Ugh.  

Sorry to rant.  I have nobody IRL who I can talk with about this (I try to be an apnea ambassador, but nobody seems interested in better sleep); I no longer trust sleep "doctors"; and my DME is on the other side of the country and never answers their phone.  Thank goodness for this forum, and for online supply ordering out-of-pocket (please don't let that get banned)!
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#12
RE: Common Issues w/ CPAP Use?
And the weird things you'll do so you can get some sleep. Nipple cream on my nose? I'll do anything!
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#13
RE: Common Issues w/ CPAP Use?
I think one of the things to take away is, as far as equipment and fit/comfort, there is not going to be a solution that you will be able to research.
There are 100 different mask types and designs, and they all sell more or less well (or they are discontinued) because every face and every head is different.
What works for me may or may not work for my wife, and what works for her may or may not work for anyone else on the forum.

Obviously, few of my frustration issues would be "correctable" simply due to the fact that the CPAP is auxiliary hardware that needs a power source.
Ya... Something like the Kickstarter scam "Airing"... IF the laws of physics would allow it to actually work... would address many issues, particularly for those on the road.

Most correctable would be the human-interface issues reported by those frustrated with their clinic and DME.
I too am frustrated beyond belief with Apria, and my wife is going to be taking our next order in to Kaiser to SHOW them what we are being shipped, and how it is not what is on the Kaiser schedule for our particular gear.
-- Rich
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INFORMATION ON 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 WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.

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#14
RE: Common Issues w/ CPAP Use?
Wow, I didn't expect this many (detailed!!) replies... before I even begin, thank you all for the insight o.o
I'll have to take some time to talk about everyone's replies here with the rest of my team, and to carefully come up with follow-up questions for the more curious comments... but in the meantime, I'll touch on some quick thoughts and first impressions. I shortened some of the quotes below for length.

(02-26-2018, 02:58 PM)trish6hundred Wrote: Hi kyokoyama, WELCOME! to the forum.!
Thank you! Good to be here; I honestly wish I knew of this place two years ago (when I first got my CPAP/would've been curious enough to obsessively pore over my stats through SleepyHead every night).

(02-26-2018, 04:34 PM)kiwii Wrote: I am frustrated that there is one price for the equipment, and a grossly inflated price for the equipment if purchased with insurance.

I am frustrated that an entire industry seems to be based on what they can milk the insurance company for: an overnight titration study for the initial setting up of a basic cpap machine just is not necessary, nor is it even the best option. [...] I am frustrated by unethical DME's that sell used equipment as new. I am frustrated by so-called sleep doctors that push for annual office visits by limiting your prescription to a yearly renewal. [...]

My experience starting out with xPAP was needlessly complicated. I am incredibly frustrated that my experience is so common among the newly diagnosed.
I'm sorry to hear your experiences haven't gone well, Kiwii. That level of confusion must be beyond infuriating when all you really want to do is to just breathe...  

(02-26-2018, 10:57 PM)Hydrangea Wrote: Sorry to rant.  I have nobody IRL who I can talk with about this (I try to be an apnea ambassador, but nobody seems interested in better sleep); I no longer trust sleep "doctors"; and my DME is on the other side of the country and never answers their phone.
It's completely fine. If anything, thank you for ranting; the more information you tell us, the better picture we can paint of what experiences of people like you may look and feel like. (Like I never would have thought the quality of DMEs can change drastically enough that you'd need to ship masks across the country and rely on online suppliers...)

(02-26-2018, 11:50 PM)FozzyDaBear Wrote: And the weird things you'll do so you can get some sleep. Nipple cream on my nose? I'll do anything!
...and on the same vein as Hydrangea's post above, I also never I'd... .... ...nipple cream?

(02-27-2018, 12:21 AM)CB91710 Wrote: I think one of the things to take away is, as far as equipment and fit/comfort, there is not going to be a solution that you will be able to research.
There are 100 different mask types and designs, and they all sell more or less well (or they are discontinued) because every face and every head is different.
That's definitely true. Even in my experience, having to sift through 2 or 3 different masks before finding my current F&P Eson was a major pain... and I had a gut feeling even that went smoother than it normally would. With that said, though, it's still sobering to read about just how common of a problem this is.

(02-27-2018, 12:21 AM)CB91710 Wrote: Obviously, few of my frustration issues would be "correctable" [with something] like the Kickstarter scam "Airing"... IF the laws of physics would allow it to actually work... would address many issues, particularly for those on the road.
I've personally been pretty interested in seeing how this has been coming along. Their more recent updates with scanning-electron microscopy pictures for their valves are just barely convincing enough that there's some truth to their engineering... but at the same time, I totally agree with where you're coming from; marketing the product to the degree that they are is, to put it lightly, very concerning.

As I said, I'll also post or send out a more detailed set of questions/impressions soon. Thank you all for your help! (and please keep submitting more thoughts, if you haven't already!)
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#15
RE: Common Issues w/ CPAP Use?
I'll chime in too, but I'll basically ditto all the above.

I've personally been frustrated by a poorly designed and flawed support system of doctor, DME, and insurance. Those first 2 aren't typically capable, willing, or able to assist or become a hindrance in some bumbling and ridiculously vain fashion. We have to learn much medical terminology and apnea knowledge to become self advocates. That's probably not a bad thing, except that is that if one DIDN'T do so, you're being taken for a ride.

This knowledge of therapy aspects are not typically discussed by the sleep or pulmonary doctor, the DME, or an RT (Respiratory Technician). It is typical of those 3 amigos where they seem to be glad to not tell you what you as the patient should know. Contrary to common sense, some of these same 3 amigos don't seem to have the actual knowledge of their own profession choice.

The mask issues of fit, comfort, and leaks rates are always in play. Nobody can avoid these 3 mask aspects IMO. Those 3 areas are seemingly coming to play, where each won't really play well with the others. That is, unless the patient finds an elusive and delicate balance that one must seemingly pay constant attention to the mask fit, leak, and comfort ratios, or they reward you with an imbalance. And that can be an overwhelmingly frustrating act to bring back into proper balance.

lots-o-coffee

PS there are some good docs, DME's, RT's, insurance companies and all their customer service reps. There just seems to be far more average or bad actors in each of the respective professional career paths.
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#16
RE: Common Issues w/ CPAP Use?
I'm frustrated by the lack of research into different "subtypes" of sleep disordered breathing. The current one size fits all approach is not working. 

I'm frustrated that definitions have changed over the years so that more and more people are now being diagnosed who may well not need treatment ....  the cynic in me sees this as a massive cash grab probably driven by the big players in the field. (Resmed, Philips Respironics, F&P)

I believe that the diagnosis and treatment of  OSA has been hijacked by financial interests much to the disadvantage of those who really do need to have their SDB/OSA treated. Just issuing a prescription for a machine is not practicing medicine, especially when many report not feeling any improvement.
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#17
RE: Common Issues w/ CPAP Use?
(02-25-2018, 11:52 PM)Hydrangea Wrote: My biggest frustration is corruption with sleep "doctors", useless DMEs, and unhelpful insurance.  

I feel very much on my own.

By what I read I don't think you are alone by a long way!   Sad
I am NOT a doctor.  I try to help, but do not take what I say as medical advice.


Every journey, however large or small starts with the first step.

Sleep-well
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#18
RE: Common Issues w/ CPAP Use?
Quote:...and on the same vein as Hydrangea's post above, I also never I'd... .... ...nipple cream?

Yes, it sounds odd and amusing. I'm trying to switch from the Dreamwear to the P10 pillows. The P10 is causing minor irritation to my nostrils. One of the common suggestions is to use Lansinoh, a product most often used for nipple soreness for breastfeeding moms.
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#19
RE: Common Issues w/ CPAP Use?
(02-27-2018, 11:09 AM)FozzyDaBear Wrote:
Quote:...and on the same vein as Hydrangea's post above, I also never I'd... .... ...nipple cream?

Yes, it sounds odd and amusing. I'm trying to switch from the Dreamwear to the P10 pillows. The P10 is causing minor irritation to my nostrils. One of the common suggestions is to use Lansinoh, a product most often used for nipple soreness for breastfeeding moms.

Yes, that one was a struggle for me too! After trying the P10, the residual soreness finally drove me (after several days) to trying Lansinoh. Thank goodness I gave in...it really works! Who would have thunk it?! Too-funny
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#20
RE: Common Issues w/ CPAP Use?
For me it was the insurance company. My deductions were paid for the year and I tried to buy a new machine that would have been covered at 100% because my deductibles were met. The insurance company said it was OK and gave me names of DME's for purchasing a machine.  The DME's told me that they are under contract with the insurance company to rent to own over a time span of 13 months. Why didn't the insurance agency tell me this! Also, if your insurance company is changed during the 13 months, you might have to start over. To get a good price you could buy new ones through Ebay, Craigslist and Amazon but then you could have problems with the warranty if something goes wrong.

Car54
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