graduating to bi-pap

3isles · Post by **3isles** » Wed Jan 30, 2008 10:40 pm

hi
haven't posted in ages
haven't been using pap in a while because it just wasn't working and was intolerable, doc rx'd O2 and that helped for a while, I am night nurse for our 15 y.o. who in on a ventilator and alarms frequently at night so after a couple of times getting up I just could not put pap back on it was so terrible

anyway doc asked me to do a retitration. boy did I ever dread that. my first one was the worst night of my life, ...BUT it was great. I asked when it was over if they ever even got up to my pressure of 13 because it was so easy to breathe and so comfortable and I actually slept even with the wires and strange bed and all and they said they took it up to 16.

They said it was bi-pap. I looked, they used a respironics synchrony. the doc says I will be getting an auto bi-pap with biflex now I know that is not the synchrony, but has anyone out there experienced both machines and can anyone tell me how the auto bi-pap/biflex compares to synchrony?

I mean, that was the first and only night in my life on pap that was pleasant and I lay there thinking I could actually live with this again even with the chaos of my life after my daughter going on the ventilator.

So anyone out there who has used both synchony and auto bipap with biflex
please share. I told the doc it had to be exactly the same as at the lab. I so want to duplicate that experience.

thanks

Cathy

mask: IQ from sleepnet but I want to try an opus
machine: soon to be an auto bipap with biflex
pressure currently 13 but jumping to 16 and I don't know what the bipap settings will be

Banned · Post by **Banned** » Thu Jan 31, 2008 12:25 am

Hi 3isles,

Here's my take on it. Medical 'professionals' should not Rx CPAP to anyone, ever! It's just practicing bad medicine or cheap medicine, at best. Anyone in need should be prescribed BiPAP from the getgo. I have to laugh at the 'professionals' with no apnea or upper airway obstruction who strap into their CPAP machines at night and set them to the lowest setting so they can 'experience' what there patient's are experiencing. What a bunch of crap. If you ever really want to get comfy with these things and toss the 02 you should try snuggling up to a ResMed Adapt SV. Now that is comfort!

Cheers,

I'm not a medical professional either. In fact, my sleep-lab doc said he would never prescribe a ResMed Adapt SV for me. Some doctors really suck!
Machine: ResMed Adapt SV
Mask: Quattro FF
Humidifier: None

Slinky · Post by **Slinky** » Thu Jan 31, 2008 7:01 am

First, have you checked the PRICE of bi-level (Bi-PAP) machines? They are 3, 4 and more times the price of a CPAP machine.

Second, assuming you have medical insurance with durable medical equipment coverage, MOST insurance companies, including Medicare, REQUIRE that you "fail" CPAP therapy and that your ordering doctor provide a Letter of Medical Necessity substantiating your failure of CPAP therapy AND need for bi-level PAP therapy.

Third, as I remember it, the Synchrony is a "professional" BiPAP machine by Respironics explicitly for sleep lab titrations (I could be mistaken about this). My sleep lab also uses the Synchrony for titrations and I did NOT sleep for beans during either of two titrations I went thru.

BEFORE you accept ANY equipment you really should do a search on and learn about both the Synchrony and the auto bi-pap with biflex. The use of the term Bi-Flex indicates that this auto is made by Respironics as Bi-Flex, C-Flex and A-Flex are proprietary names for Respironics' various forms on breathing relief. You will then better understand and be more comfortable w/the recommendation of this auto bi-pap with biflex. If you are not, then discuss this further w/your sleep lab doctor before accepting any equipment.

3isles · Post by **3isles** » Thu Jan 31, 2008 8:43 am

...OK lets see,

I obviously was too vague

I started cpap in 2005 pressure 13 I had a really rough time, I am horribly claustrophobic, check my older posts, I won't waste time here with the details of all that. I got help here and on another board that was good in those days.

I finally hit on what worked and was compliant for 11 months then my daughter came home from hosp and has been on ventilator ever since and I have to sleep on couch by her room to listen for alarms and it messed up my system, and I guess my need for higher pressure might have added to that,

anyway with that clarification:
thanks Banned guest. for the advice re machine, is that an auto bipap? I will look into it.

and thank you Slinky, I did know that Biflex limited things to respironics, but I don't know if my sleep doc knows that, or if she was just simplifying if for me not knowing that I already knew it. what I think she is writing rx for is auto bipap with biflex or whatever resmed calls it. because she said only respironics and resmed make the machines that will do what she wants done. I have looked around and kind of realized I could probably not get a synchrony, (though I found a used one for 850.00) I just wanted some assurance that I would be as comfortable as I was at the lab with the new machine. I did tell the doc to be sure to write the exact settings down, and because I am very familiar with the rts at the dme and one of them lives very near me I will make them tweak this thing till they see it in their sleep if I am not comfy. I am never going back to the hell of that horrid polaris boat anchor wind tunnel again! Now that I have felt how good this can feel there is no way any one is going to convince me to settle. And an overtired woman on the edge is no one to mess with.....

I am pretty sure my insurance will cover the switch up to biflex because I had tried cpap, and failed, and then succeeded for 11 months and then failed and then tried O2 and that wasn't helping and then retritrated. so I should be ok on that.
thanks for the help!!

Cathy

Slinky · Post by **Slinky** » Thu Jan 31, 2008 9:18 am

I'm not familiar w/the "higher" levels of xPAP, beyond the straight CPAPs and autoPAPS so I'm not familiar w/Resmed's and Respironics' bi-level autoPAPs. All I could go by is if your doctor is scripting "w/bi-flex" it would have to be a Respironics as I understand it.

My sleep doc first wrote my order for "w/C-Flex 3" and when I insisted I wanted a Resmed, he scratched out "C-Flex" and wrote in "EPR".

I did understand that you HAVE failed CPAP and thus "should" be able to get a bi-level.

3isles · Post by **3isles** » Thu Jan 31, 2008 9:28 am

Slinky,

yeah re higher levels of pap I don't know either, I have been trying to read up on it, but have no up close and personal experience past that in the lab the other night and of course that was the "lab machine" and not the one I can get. And sorry, I guess I misunderstood you re failing cpap.
I do appreciate the help.

Guest · Post by **Guest** » Thu Jan 31, 2008 10:11 am

definitely go with the superior Respironics BiPAP Auto

MartyR · Post by **MartyR** » Thu Jan 31, 2008 10:16 am

i dont think i could od this w/o bipap....

i was lucky insurance covered a lot and i had plent of room on visa or i cold have dont it

3isles · Post by **3isles** » Fri Feb 01, 2008 1:20 pm

thanks guest, and thanks MartyR
I am waiting for the rt to call, I told them to do nothing until we talk.

I have been reading through the bipap/pearls thread and I am nervous. that bit about feeling rushed when breathing - thats how I felt during the first titration study in 2005. It was terrible, couldn't stand it.

During this titration that they said was bipap it was nothing like that. If I wanted to hold my breath I could, if I wanted to inhale v e r y s l o w l y I could and the machine just went along with me without any struggle. thats the kind of machine I want. But from reading the "pearls" thread it does not sound like I will get it. I will have to be drugged to be able to let a machine tell me when to inhale/exhale I can see this is going to get messy...

sigh...
and just when I was feeling hopeful

oh well I should have known it was too good to be true

AdmiralCougar · Post by **AdmiralCougar** » Fri Feb 01, 2008 2:14 pm

3isles

I use a Auto BiPAP with Bi-Flex and after finding the right mask for me I sleep quiet well with it. I don't find that it rushes my breathing and forces me to take breaths. And my machine is rather quiet, though I've heard that can be a crap shoot on getting one that is.

I've never used straight CPAP except for very early part of my titrations, and I've never had the opportunity to try out the resmed machine, so I don't have any pearls of wisdom there. But the good thing you have with it being an Auto BiPAP with Bi-Flex is that you don't have to fight for a data capable machine.

Good luck with your decision.

Christy

3isles · Post by **3isles** » Sat Feb 02, 2008 9:26 am

Thanks Christy thats encouraging,

I have heard from the DME the RT will call me on Monday so I'll be able to talk to him about it, and find out exactly what he plans for me. He has to be here monthly to do equipment checks on my daughter so he has to see me often, I am pretty sure (though he is still working for a dme...) that he will be straight with me. I am just so nervous. The first experience with cpap was so horrific and the first dme such a ....well to spare the tender feelings of the good dme's out there I'll just say, he was not a kind, patient or pleasant person.

Anyway, I am trying to just chill and enjoy the weekend and not stress too much till I really have to....yeah...right I beleive that..