Another Outragous DME/Sleep Lab Story

AdmiralCougar · Post by **AdmiralCougar** » Mon Aug 20, 2007 7:20 pm

OMG... I totally can't believe this. I was called on Thursday by my Pulmonary Dr. and was told my sleep study results had finally been read. So here is the Dr. who read my studies recomendations.

BIPAP of 22/17 cm of water pressure. Follow it with a pulse ox in 2 weeks.
If still desaturating below 90%, bleed in 1 L NC.
Followup PSG in 6-8 weeks to reassess the pressure and oxygen needs
Please fast track the setup.

Now I already have my machine (My sleep study was so bad they put me on BiPAP before they had finished reading it.) it is currently set 20/16.

So first I call the Sleep Lab since it's technically the same place but I know I'll get a live person there and I talk to the same receptionist/nurse or what ever her position is that I've spoken to 90% of the time I've called the sleep lab. Now I know it wasn't her fault but dang I'm suppose to be back in there in 6-8 weeks, first available appointment December 3rd??? Now she says to call back after September 5th because she's pretty sure she will be able to come up with a cancellation and she'd try and get me an earlier time then. So very crazy anyway I can hope things will actually work out so that I get in somewhere in the 6-8 week time frame.

Now she doesn't actually deal with appointments for setting the machine pressures so she had to transfer me to the dreaded line that they never answer only take messages and then call you back. So I get called and apparently they didn't listen very well to my message cause they had no clue as to why they were calling me back. Then when I told them my Dr. had told me I needed to get my pressures changed that they said the soonest I could come in to do it was September 12th.... OMG WTF is up with that. Something that would take less than 5 min and you can't get me in till then??? I told her that was ridiculous and flatly told her that I'd set the damn thing myself, because I downloaded the instructions to do so already, I was only going through them so that I didn't ruffle any feathers. Then I hung up.

Gah how freaken insane. How the Heck is that Fast Track???? I'm kind of pissed now though cause I was hoping to take care of mask issues I've had fairly high leak rates of 50.2 and higher some nights and in order to get it lower I have to tighten it up till it's almost to uncomfortable to stand. And with the pressure going up to 22 I can only foresee it just getting worse. Plus I was hoping I could get them to print out my graphs from the sleep study.

Anyway I've got a blog up that I'm going to post my daily happenings with OSA and other health stuff. But right now I've only got my Sleep Study Results up that I retyped. If anyone is interested. Sadly I've only been provided with the Dr.'s reading so far so as said above no graphs.

[url=http://admiral_cougar.clawz.com/Blog/?page_id=3]Sleep Study Results[/url]

andyomega · Post by **andyomega** » Mon Aug 20, 2007 8:32 pm

sux... get ur report with graphs readings and all. might want to learn how to set your own machine so you can help yourself because u cant depend on them.

AdmiralCougar · Post by **AdmiralCougar** » Mon Aug 20, 2007 8:44 pm

andyomega wrote:sux... get ur report with graphs readings and all. might want to learn how to set your own machine so you can help yourself because u cant depend on them.

Thanks to a fellow member of the site I do have the instructions to set my machine myself, it's just I'm with Kaiser and they can get a little annal about things since everything is in house. You would think it would make things work better, but NO....

Snoredog · Post by **Snoredog** » Mon Aug 20, 2007 8:58 pm

just change it yourself, you'll get better therapy anyway, below is for the CPAP Auto, but your Bipap/Auto is very similar; just substitute Auto:Max=IPAP Max and Auto:Min=EPAP Min and CFlex=Biflex. You will also have a PS or Pressure Support setting, the range is 3 to 8 cm, that is how you set the Maximum spread between the 2 pressures, pretty easy to program.

1. Hold down the <- -> buttons while plugging in the power on the back, wait 2 beeps, release buttons.
2. Press the + key. <- -> buttons move to next field, -/+ keys decrement/increment
3. Check the following field(s):

-Therapy Mode=Auto (CPAP/Auto)

-Auto:Max=12 (default=20.0cm)

-Auto:Min=6.0 (default=4.0cm)

-CFlex Setting=2 (options are off, 1, 2 or 3)

-AutoRamp Time=30 (options are 05 to 45 min)

-AutoRamp Pressure=6.0cm (4cm->AutoMin)

-Mask Alert Feature=ON (On/Off)

-Auto Off Feature=Off (On/off)

-Split Night Time = Off (off, 120, 180, 240)

-Show AHI/Leak Feature=ON (On/Off)

Press On/Off button to exit.

Bookbear · Post by **Bookbear** » Mon Aug 20, 2007 9:16 pm

Just think what it would have been like without Fast Track?

"Yes.... I think we can work you in sometime in June of 2008.... is June good for you?"

Aren't you glad you found this forum and can take necessary steps to ensure your therapy?

AdmiralCougar · Post by **AdmiralCougar** » Mon Aug 20, 2007 9:38 pm

Snoredog wrote: -Mask Alert Feature=ON (On/Off)

-Auto Off Feature=Off (On/off)

Just curious but why Mask alert on and auto off off? My tech purposely set it the other way. I tried turning Mask alert on and my machine didn't beep or anything when I tried testing it, so what kind of alert does it really give? And my tech says that auto off is also kind of auto on so the machine doesn't start running till you start breathing seems like that's a good feature isn't it?

Slinky · Post by **Slinky** » Mon Aug 20, 2007 9:44 pm

I wonder how soon Kaiser can work in a heart attack victim thru the ER?? September 25th??

Hey, you were fast-tracked, you got your bi-pap during the sleep study. Your pulmonary doctor can order the overnight oximetry for you and he'll understand the results and if 02 supplementation is needed he can order that for you too. Since you know how to reset your pressures, you're good to go. Stuff Kaiser!

Just have your pulmo call the sleep lab back and schedule the followup (6-8 weeks) sleep study for assessing your results after the pressure change and overnight oximetry. That might get your reassessment PSG somewhere w/in the time frame the Fast Track doctor recommended.

AdmiralCougar · Post by **AdmiralCougar** » Mon Aug 20, 2007 9:54 pm

Bookbear wrote:Just think what it would have been like without Fast Track?

"Yes.... I think we can work you in sometime in June of 2008.... is June good for you?"

Aren't you glad you found this forum and can take necessary steps to ensure your therapy?

I don't know what I would of done with out this site. I owe allot to everyone here and our hosts.

Now I'm suppose to bring my BiPAP in for a maintenance check next August I wonder if I should call and make the appointment now... I bet it's already to late to get my 6 month appointment for mask/headgear and tubing replacement.... .

Snoredog · Post by **Snoredog** » Mon Aug 20, 2007 10:37 pm

AdmiralCougar wrote:
Snoredog wrote: -Mask Alert Feature=ON (On/Off)

-Auto Off Feature=Off (On/off)
Just curious but why Mask alert on and auto off off? My tech purposely set it the other way. I tried turning Mask alert on and my machine didn't beep or anything when I tried testing it, so what kind of alert does it really give? And my tech says that auto off is also kind of auto on so the machine doesn't start running till you start breathing seems like that's a good feature isn't it?

AdmiralCougar · Post by **AdmiralCougar** » Mon Aug 20, 2007 11:15 pm

Snoredog wrote:
AdmiralCougar wrote:
Snoredog wrote: -Mask Alert Feature=ON (On/Off)

-Auto Off Feature=Off (On/off)
Just curious but why Mask alert on and auto off off? My tech purposely set it the other way. I tried turning Mask alert on and my machine didn't beep or anything when I tried testing it, so what kind of alert does it really give? And my tech says that auto off is also kind of auto on so the machine doesn't start running till you start breathing seems like that's a good feature isn't it?

rested gal · Post by **rested gal** » Tue Aug 21, 2007 12:27 am

Please remind me...is your M BiPAP Auto operating in just bipap mode at EPAP 16 / IPAP 20 ?

Or is it being used in auto-titrating bi-level mode with min EPAP 16 / max IPAP 20 ?

No matter what mode of operation, those kinds of terrible AHI's at those pressures sure sound like GERD might be messin' with you.

msheda · Post by **msheda** » Tue Aug 21, 2007 6:03 am

Again, it's a case of 8.00 an hr clerks dictating our level of health care.

On 7/27 the dr calls for a 24 hr holter monitor for me. they didn't have them in. they will call when they are in.... I call back 4 times... just got the thing put on yesterday. Apparently there's not a waiting list, if you happen to be in when one comes in, it's yours.

On 8/10 I had my sleep study, it went split, high bipap. apparently the clerk didn't show that it went split, so the Dr didn'nt read it. I called on Wednesday (I was being polite and giving them time to read it) He had left for the week.

They called yesterday and said he would read it this week, I explained that I was leaving town on Friday and needed to have it read before then, I am willing to pay for my own machine, don't get insurance involved. She will try to get him to read it Tues or Wed.... (she called back and asked why I was going to pay for it, I needed Bi-Pap, which was expensive and was like 3200.00... I explained that if I needed something, I wanted the best, and by the time I got done paying co-pay and co-insurance, it was 300.00 more for me to get the best avaliable than it was to get the bottom of the line from the DME and not have to wait for insurance to authorize it. Add to this that I am 4 months into a 6 month contract, so in 2 months I would lose my insurance and have to start over...easier for me to own it outright)

Is there only 1 doctor at the hospital that can read this thing? If my sleep study was so bad they had to go split, and it was a high pressure, doesn't that mean I need the thing? So why am I waiting for someone to transfer some numbers from 1 piece of paper to another?

Just more samples of sometimes it's aint the Dr's, but the clerks at the providers and insurance companies that are the problem.

Snoredog · Post by **Snoredog** » Tue Aug 21, 2007 7:54 am

rested gal wrote:Please remind me...is your M BiPAP Auto operating in just bipap mode at EPAP 16 / IPAP 20 ?

Or is it being used in auto-titrating bi-level mode with min EPAP 16 / max IPAP 20 ?

No matter what mode of operation, those kinds of terrible AHI's at those pressures sure sound like GERD might be messin' with you.

I think his AHI and LEAK data are cornfused with each other, but if that is the actual AHI he is getting, then EPAP needs to come way up from where it is.

I agree, I would put it in BiFlex Auto mode and let it find the pressure on its own if it is an Auto.

oceanpearl · Post by **oceanpearl** » Tue Aug 21, 2007 9:10 am

[quote="msheda"]Again, it's a case of 8.00 an hr clerks dictating our level of health care.

They called yesterday and said he would read it this week, I explained that I was leaving town on Friday and needed to have it read before then, I am So why am I waiting for someone to transfer some numbers from 1 piece of paper to another?

AdmiralCougar · Post by **AdmiralCougar** » Tue Aug 21, 2007 11:10 am

Snoredog wrote:
rested gal wrote:Please remind me...is your M BiPAP Auto operating in just bipap mode at EPAP 16 / IPAP 20 ?

Or is it being used in auto-titrating bi-level mode with min EPAP 16 / max IPAP 20 ?

No matter what mode of operation, those kinds of terrible AHI's at those pressures sure sound like GERD might be messin' with you.
I think his AHI and LEAK data are cornfused with each other, but if that is the actual AHI he is getting, then EPAP needs to come way up from where it is.

I agree, I would put it in BiFlex Auto mode and let it find the pressure on its own if it is an Auto.

First I'm not on auto because they are trying to figure out an Oxygen issue, second I'm not getting the numbers mixed up I can clearly read the screen... But I did run the machine last night at 22/17... But I had some kind of problem with the machine which I'm also gonna post in another thread.

I woke up at just after 3am this morning after being on the machine just over 5 hours. The pressure was near non existent barely blowing at all. I was totally shallowly rebreathing in my air, because the pressure was so low it wasn't evacuating it. It totally freaked me out. Out of habit in the dark I turned off the machine before I looked to see what was up on the screen... damn me. Anyway I got up and went to the bathroom and came back to test to see what was up with the pressures and the machine was back at pressure. I know it was working when I fell asleep, and I darn well know I didn't change anything that would cause that pressure drop like that. I tried to lay back down with the machine for the last hour before I had to get up, but my sinuses had totally clogged up like they do every time I lay down without the machine, and I couldn't get them clear enough to breath through the mask....

But as a start of a new week the AHI=22.1 and L/min=30.4, but I don't know if those numbers are skewed because of the problem I had with the machine. I totally expected the leaks to be higher because the darn mask kept waking me up with leaks in the eyes and whistles... I totally don't think it wants to run at a pressure of 22.... Sadly also after taking fairly easy to the machine I'm gonna have to take a while to get used to that darn higher pressure if I can because whoa I can barely stand it now.

So I'm totally scared to try and sleep with the darn thing now...

Anyway I'm gonna try calling the unhelpful DME/Sleep Lab and see what they have to say about the darn machine.

Oh by the way I'm a Gal... Oh and my after chatting with RG about GERD I emailed my Primary Care Dr. and he's prescribing something to help instead of the Mylanta I drink by the bottle.

Christy

Machine	Mask

Additional Comments: Avg. AHI .4