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Trust issue with DME
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Sleepster Offline
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Post: #11
RE: Trust issue with DME
(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.

It's the nature of the beast. Natural fluctuations. I would raise the pressure to 12 cm and see what happens in the next two weeks or so.

Sleepster
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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.
05-16-2014 02:14 AM
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Moriarty Offline

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Post: #12
RE: Trust issue with DME
(05-15-2014 08:07 PM)kderevan Wrote:  ....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....

You are right - People don't do that... Often they give up because it's too hard... and this sort of behaviour by suppliers contributes to that treatment failure.

In Australia there is a similar but different problem because there is such a small contribution by insurers to the cost of machines. This pushes the cost conscious buyer into the cheaper and less capable machines - they often find it unsatisfactory and to avoid further costs the gear goes in the cupboard.
05-16-2014 04:46 AM
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Bama Rambler Offline

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Post: #13
RE: Trust issue with DME
I read this thread with interest and to chime in here, you actually have a decent machine. The Elite actually has efficacy data and while it certainly would be nice to have an Auto-Titrating machine it isn't the end of the world if you can't get one.

Looking at the numbers you posted (.68 hypopnea, 4.35 obstructive, and .54 CA.), if that's typical of what you see on a regular basis, I'd be inclined to agree with Sleepster and raise the pressure. I would probably start out by raising it to 11.4 or 11.6 and see what happens to the numbers for a few days. Then if the H's and OA's go down and the CA's don't raise a lot, you might try raising it again. I wouldn't recommend trying to get to zero AHI but somewhere below 5 AHI would be a good target.
05-16-2014 08:19 AM
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kderevan Offline

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Post: #14
RE: Trust issue with DME
Well, retired_guy, I am thinking this is what I should do. Honestly, I am so frustrated and near tears over this. I went to this sleep lab and put myslef in their hands for diagnosis and a treatment plan. When the treatment plan doesn't seem to be working quite as well as it should, I call them to ask for help, and instead of helpful suggestions, I am accused of breaking the law and then told that AHI's of 4-9 seem "pretty good, actually." Well, maybe that is pretty good, I don't know. I'm new to this. But since "normal" is supposed to be 5 or less, I'm thinking I would at least like to be in the normal range every night. Is that unreasonable? That's not a rhetorical question--I really want to know if I'm expecting too much. I can't trust the DME guy to be honest with me, which is a damn shame. THEY know all this stuff--they have been in business for 15+ years. I was truly hoping to have a partnership with them for the long term to get this apnea thing under control. Instead, I'm tired, cranky, not thinking straight, and don't know where to turn (except HERE and thank goodness for this place!).

I don't want to be underhanded or screw anybody--I just want to be treated adequately so I can wake up and think straight. If I get my PCP to write the prescription as you said, how does that work with the insurance company and all? They are renting my machine, so it seems like it would be logical to assume that any time in the first 10 months (the rental period) the DME might expect to have it returned. Certainly, if the insurance company found that I wasn't complying with treatment, they would take the equipment from me and return it. The DME told me that I had to be 70% compliant for the insurance to pay. I have been 100% compliant--my stats show a bit less than that, because I had a few sleepless nights this week after trying to quit ambien, so no sleep=not enough hours on the cpap. That is 2 days out of 70 that I haven't put in the required hours on the machine.

Sorry I am rambling. I am a confused mess. I want to call the DME again and tell them how disappointed I am, now that I've had time to think about it, that they are so unhelpful. But I doubt they would care. Also, I'm supposed to send in my SD card for them to read, but I don't know if I trust them to even do that right.


(05-15-2014 06:03 PM)retired_guy Wrote:  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.

Kathi D.
05-16-2014 01:39 PM
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kderevan Offline

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Post: #15
RE: Trust issue with DME
I am sorry to seem like I'm asking the same questions after I've already had good answers. I truly feel like I can't think in a linear fashion right now, from lack of sleep and sheer frustration!
Do you mean I should just go ahead and raise the pressure myself? I understand there are instructions on the site for that. So it seems that I can't count on the DME for any help--I guess I should have known that!

(05-16-2014 08:19 AM)Bama Rambler Wrote:  I read this thread with interest and to chime in here, you actually have a decent machine. The Elite actually has efficacy data and while it certainly would be nice to have an Auto-Titrating machine it isn't the end of the world if you can't get one.

Looking at the numbers you posted (.68 hypopnea, 4.35 obstructive, and .54 CA.), if that's typical of what you see on a regular basis, I'd be inclined to agree with Sleepster and raise the pressure. I would probably start out by raising it to 11.4 or 11.6 and see what happens to the numbers for a few days. Then if the H's and OA's go down and the CA's don't raise a lot, you might try raising it again. I wouldn't recommend trying to get to zero AHI but somewhere below 5 AHI would be a good target.

Kathi D.
(This post was last modified: 05-16-2014 02:01 PM by kderevan.)
05-16-2014 01:58 PM
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kderevan Offline

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Post: #16
RE: Trust issue with DME
Last night my numbers were hypopnea 1.18, obstructive 8.03, and CA .75, and I'm feeling the lack of sleep.

Kathi D.
05-16-2014 02:02 PM
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PaytonA Offline
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Post: #17
RE: Trust issue with DME
Kathi,

It is not an unreasonable goal to get your AHI below 5 but in some cases may not be entirely attainable.
Keep up the good work and keep on keepin' on.

best Regards,

PaytonA
05-16-2014 02:04 PM
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kderevan Offline

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Post: #18
RE: Trust issue with DME
Thank you for the support! The DME told me yesterday that in the sleep study, I had AHI's on my side, so that was a "reason" he had that an autoset machine wouldn't help me. ?? I do sleep on my side mainly, curled up. And even if I'm on my back, I sleep in an adjustable bed so my head is always raised.

(05-16-2014 12:42 AM)becker44a Wrote:  
(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

Kathi D.
05-16-2014 02:27 PM
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Bama Rambler Offline

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Post: #19
RE: Trust issue with DME
Your numbers for last night (hypopnea 1.18, obstructive 8.03, and CA .75) are a little higher but the ratio mimics the night before. I suggest that you raise the pressure yourself, but you'll have to decide if you're comfortable doing that.

Since the PCP wrote the script for the machine I assume they also wrote the pressure on the script. If that's the case I might consider calling them and telling them what numbers you're seeing and ask if they're ok with you raising the pressure a little yourself. They probably will be fine with it.
However, if it were me, and they weren't, I'd go ahead and change them anyway, but I can't tell you that's what you should do.
(This post was last modified: 05-16-2014 02:35 PM by Bama Rambler.)
05-16-2014 02:33 PM
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PaulaO2 Offline
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Post: #20
RE: Trust issue with DME
Your DME does drugs. And not very good ones.

Yes, get the manual for your machine and increase the pressure slightly, if you want to give that a try.

I suggest you read this first:
http://www.apneaboard.com/adjust-cpap-pr...re-on-cpap

Here is how to get the manual and how to get into some of the clinician menus.
http://www.apneaboard.com/adjust-cpap-pr...tup-manual

PaulaO2
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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.
05-16-2014 02:35 PM
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