Think I'm getting somewhere~~YEA!!!

NyNurse33 · Post by **NyNurse33** » Tue Oct 03, 2006 8:52 am

Ok, so I called the RPsgt manager @ the sleep lab and she called me right back. I told her my feelings about straight cpap vs apap w/ c-f;ex, my symptoms, yadda, yadda, yadda (those of you who have been following my drama, know the deal) Basically with the c/o pressure in my ears alone, made her state that she thinks this machine isn't working for me. She also sounded surprised @ the model that I was given, almost like it was a DME choice and not hers. She talked about how respironics has a c-flex and talked about auto titrating (All the stuff I now know about) She was very concerned about my setting of "10" having had such a low RDI. She does not think this was a good titration study at all. She is going to call the DME and ask them to loan me an apap for a couple of weeks for no extra billing and see what the data says after that. She states I only had 1 central @ the diagnostic level and that wouldn't be a problem with apap. I just hope she's not looking to lower my setting and still want to give me a straight cpap, but at least I am getting somewhere now. I probably won't get an apap with c-flex, she was saying, but don't most of them have the both together? I am on cloud 9!!!

SelfSeeker · Post by **SelfSeeker** » Tue Oct 03, 2006 9:10 am

Melissa,

I do hope you get to the bottom this. At least somebody listened and is trying to help find a solution.

The squeeky wheel gets the grease.

For Central I thought Bi-PAPs are used. Or does it make a difference if CPAP or APAP or Bi-PAP or an auto Bi-PAP is used?

And I learned a new thing today.

RDI Acronym: Respiratory Disturbance Index

Includes apneas and hypopneas, and may also include other respiratory disturbances such as snoring arousals, hypoventilation episodes, desaturation events, etc. They are often identical, but depending upon what is scored, the RDI may be larger than the AHI.

_________________

CPAPopedia Keywords Contained In This Post (Click For Definition): CPAP, AHI, RDI, auto, APAP

redring · Post by **redring** » Tue Oct 03, 2006 9:21 am

I am fairly new but I have the auto titrating typ machine and its really nice. I actually had looked it all up after the sleep study and made sure my DR requested it. You will be happy with it. Good luck !

snoregirl · Post by **snoregirl** » Tue Oct 03, 2006 9:41 am

Keep working at it. I would bet that the APAP is a loaner and will be used to try to lower your setting and stop your complaints with straight CPAP.

I know I sound pessimistic but if you want that APAP as a keeper, you need to keep pushing. The key is lower pressure much of the night. Lower than lowering your CPAP setting.

I just finally installed my software and I was surprised at just how much of the time my machine spent at 10 (my low limit on APAP) (my titrated pressure is 13, and seemed to peak in the high 12's.)

I can't remember if you are near to ending your rental period? Just need to finish this up to your satisfaction before that happens.

Any yes you can have Auto with CFlex (I do) but I don't know about Auto without for Remstar machines.

rested gal · Post by **rested gal** » Tue Oct 03, 2006 9:58 am

NyNurse33 wrote:I probably won't get an apap with c-flex, she was saying, but don't most of them have the both together?

If she is telling you that you probably won't get an apap with C-flex, she has one of these things in mind:

1. A resmed machine (S8 Autoset Vantage, or the older S7 Autoset Spirit)

or....

2. An old Respironics REMstar Auto, before they added C-Flex to their autopap.

I'd hold out to get one of these machines for the autopap "trial" -- in hopes that after the trial period is over, you can get your doctor to make them let you keep the autopap instead of turning it back in for a straight cpap:

A. Respironics REMstar Auto "M" Series (it will have C-Flex.)

B. Respironics REMstar Auto with C-Flex (slightly larger than the newer "M" series Auto.)

If you let them give you a resmed machine for the autopap trial, it could be much more of a hassle to get them to swap for the machine you want afterwards. Better to do the autopap trial on the machine you'd actually want to dig your heels in to keep.

Unless the sleep lab RPsgT was looking at other things about your titration during the sleep study that made it be a questionable titration in her eyes, I don't see why she would be surprised about whatever pressure was needed. Low RDI, mild OSA, High RDI, severe OSA... none of those things correlate to what pressure it takes to keep an individual's throat open. Some people can have very mild OSA, yet need a very high pressure to keep the throat open. Others can have severe OSA but need only 5 or 6 cm's H20 pressure to keep the throat open. I'm a little surprised that an RPSGT working in a sleep clinic seemed to think the RDI was a direct reflection on what amount of pressure it would take to hold the throat open.

You're making good progress, Melissa! Good luck!

SelfSeeker, if a person had true Central Sleep Apnea or a very large amount of "centrals", a bi-level ST (spontaneous/timed) machine is usually best. Like the machines bella and christinequilts (two posters on this message board) use.

As I understand it, a few random centrals showing up in a sleep study or in the data at home are no problem and don't require any special machine.

_______________________

http://www.apneasupport.org/viewtopic.php?p=24677

In a reply titled "Nope" sleepydave (an RPSGT and manager of an accredited sleep lab) responds to honda's question about his sleep study results:

honda wrote:

Thanks for the comments, one other question though, do the 4 central apneas have any significance ?

None whatsoever.
sleepydave

NyNurse33 · Post by **NyNurse33** » Tue Oct 03, 2006 10:39 am

It is a loaner, she did say that. I was thinking also to see how I do on an apap. She said I have mostly hyponeas, something about shallow breathing. I made her aware that my rental period is nearing toward the end. I am coming up to 60 days this week. When she calls back today to let me know if the DME has the machine or I have to pick one up @ the sleep lab, I am going to tell her again, that I want to have the apap, not just a lower cpap setting. I felt that the conversation was rushed, but somewhat satisfied.

SelfSeeker · Post by **SelfSeeker** » Tue Oct 03, 2006 11:02 am

Rested Gal - Thanks for info.

Melissa Good luck.

The way hyponeas were explained to me and shown on a PSG, is that a bit of air is getting through, because the air way is not competely blocked by the tongue.

Snoredog · Post by **Snoredog** » Tue Oct 03, 2006 11:22 am

don't fall for that loaner crap, you want a machine someone else has used? what if they had TB?

ask for and get the machine you want, you will be stuck with it for the next 5 years before insurance will ever put a dime towards another.

I suggest the Remstar M series Auto w/clfex.

You will have to also get the humidifier with it.

bdp522 · Post by **bdp522** » Tue Oct 03, 2006 11:39 am

I agree with snoredog. I think they are just holding you off until it's too late to do anything about it. I've only been on cpap 2 months, but I've already had 2 pressure changes. I use cpap normally (sleep better on cpap), but if I have a problem I can switch to apap and see what's going on. I think you should fight for the apap with c-flex!

Brenda

snoregirl · Post by **snoregirl** » Tue Oct 03, 2006 12:18 pm

My rent to own period period with insurance was supposed to be 3 months (90 days) BUT......

Apria sent an envelope for my data card 2 1/2 months in. Really early. Words were included like "so you don't interrupt your insurance coverage..."

SO My point is you may only have 2 weeks left for trial before your insurance company tries to buy the machine.

Keep in close contact with you insurance so the DME doesn't try to submit a machine you don't want for purchase!!!

NyNurse33 · Post by **NyNurse33** » Tue Oct 03, 2006 2:00 pm

ok, I called the RPsgT back @ 2:30 to see if she had found a machine for me either from my DME or from her and they said she went home for the day. Uh-oh, I thought, so I decided to call my DME and ask for the name the RPsgT told me she was going to call. I got someone else, who works in the RT dept @ DME. She told me that "N" had called her and told her to order me a auto for a trial period, but that she had called "N" back to find out if she could use a different company, like respironics, but "N" hadn't got back to her. See the orginal script states resmed s8 escape and they have to make sure that I can use another company other than resmed (don't ask me why...but I don't think she is lying, why would she) apparently they don't have or carry resmed auto (which would be a vantage, I'm guessing). This DME usually uses respironics. So I told her (DME) the whole story and asked if this would be a brand new machine and she said yes, they would have to order it too. I asked her if this machine works out for me, would I be able to convert to it and she said yes. I told her about my time limit for my insurance rental period too. I asked her when she spoke to "N", hopefullytomorrow, would she remind "N" about me wanting c-flex too and she said she would and call me tomorrow @ work. Sounding more and more optimistic, unless they are just saying these things to pacify me, but I plan on following through everyday.

snoregirl · Post by **snoregirl** » Tue Oct 03, 2006 2:41 pm

Sounds like you are on the right track. I don't know how long the ordering will take, but hopefully not long.

Good idea to call every day (both N and the DME)

NyNurse33 · Post by **NyNurse33** » Tue Oct 03, 2006 4:40 pm

Depending on what machine I do end up with, I will so be needing all of your help adjusting things..just forewarning you all!!!

SelfSeeker · Post by **SelfSeeker** » Tue Oct 03, 2006 5:04 pm

Melissa,

If you get the Respironics Remstar M Auto, we can use one topic and post away.

NyNurse33 wrote:Depending on what machine I do end up with, I will so be needing all of your help adjusting things..just forewarning you all!!!

Gerald · Post by **Gerald** » Wed Oct 04, 2006 8:43 am

Melissa......I believe Snoredog and Restedgal are correct.....push hard for an M Series Auto with C-Flex. ALSO....get the software to go with it. You'll probably have to open your purse for that....but, it's more than worth it.

By "putting a gauge" on the problem (software reports) you can tweak and tune the system untill you get it just right.

I'm suggesting the system that I use.......and I wouldn't want to go with anything else. Insurance would not pay for my equipment....it all came out of my pocket (insurance is just pre-payment anyway)...and I got what I wanted.

Don't give up....just realize that you're right...."and"keep on a'comin".....

Mask

Think I'm getting somewhere~~YEA!!!

Think I'm getting somewhere~~YEA!!!

Re: Think I'm getting somewhere~~YEA!!!