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palerider wrote: ↑

Mon Sep 16, 2019 5:43 pm

Yes, it is that bad.

Thanks, Palerider,

Can you give me some ammunition about it to use when I hear back from the NP at the clinic?

You poor thing - what a drag that you ended up with the CA response to your therapy.

katestyles wrote: ↑

Mon Sep 16, 2019 7:00 pm

You poor thing - what a drag that you ended up with the CA response to your therapy.

Thanks, Kate. Yes, I was hoping for better news but really felt deep down that this was the direction things were going. I am going to try as hard as I can to see if I can pry an ASV out of them instead of the ST. I just don't want to have to struggle along night after night with an ST for a month or two knowing that I will hate it. Then I'll have to wait a couple of more months to get in for a titration and then wait another month for it to be evaluated and then wait another month for the DME to get it. I don't have as much patience as I did when I was younger! We will see what I hear back from the Nurse Practitioner but I am not expecting much good news.

Greentree wrote: ↑

Mon Sep 16, 2019 6:18 pm

palerider wrote: ↑

Mon Sep 16, 2019 5:43 pm

Yes, it is that bad.

Thanks, Palerider,

Can you give me some ammunition about it to use when I hear back from the NP at the clinic?

The ST is ancient, stupid tech. ALL it does is whack you with a high PS, constantly, which will exacerbate central apnea. If the PS on the ST isn't high enough to *cause* central apnea in it's own right, the it's too low to effectively ventilate you when you don't try to breathe.


The ASV, by contrast monitors your every breath, and increases, or decreases the PS to be just enough, for your instant needs, frequently, the ASV support will *normalize* your breathing, so that you're breathing better, all night long.

palerider wrote: ↑

Mon Sep 16, 2019 10:46 pm

Greentree wrote: ↑

Mon Sep 16, 2019 6:18 pm

palerider wrote: ↑

Mon Sep 16, 2019 5:43 pm

Yes, it is that bad.

Thanks, Palerider,

Can you give me some ammunition about it to use when I hear back from the NP at the clinic?

The ST is ancient, stupid tech. ALL it does is whack you with a high PS, constantly, which will exacerbate central apnea. If the PS on the ST isn't high enough to *cause* central apnea in it's own right, the it's too low to effectively ventilate you when you don't try to breathe.


The ASV, by contrast monitors your every breath, and increases, or decreases the PS to be just enough, for your instant needs, frequently, the ASV support will *normalize* your breathing, so that you're breathing better, all night long.

Thank you so very much, Palerider. That is exactly the kind of concise information I was looking for. It has certainly convinced me that if the University Clinic won't prescribe an ASV for me then I will self pay for one. I am very grateful for your help.

Greentree wrote: ↑

Mon Sep 16, 2019 11:21 pm

palerider wrote: ↑

Mon Sep 16, 2019 10:46 pm

Greentree wrote: ↑

Mon Sep 16, 2019 6:18 pm

palerider wrote: ↑

Mon Sep 16, 2019 5:43 pm

Yes, it is that bad.

Thanks, Palerider,

Can you give me some ammunition about it to use when I hear back from the NP at the clinic?

The ST is ancient, stupid tech. ALL it does is whack you with a high PS, constantly, which will exacerbate central apnea. If the PS on the ST isn't high enough to *cause* central apnea in it's own right, the it's too low to effectively ventilate you when you don't try to breathe.


The ASV, by contrast monitors your every breath, and increases, or decreases the PS to be just enough, for your instant needs, frequently, the ASV support will *normalize* your breathing, so that you're breathing better, all night long.

Thank you so very much, Palerider. That is exactly the kind of concise information I was looking for. It has certainly convinced me that if the University Clinic won't prescribe an ASV for me then I will self pay for one. I am very grateful for your help.

I wish you the very best of luck.

Hey PR....guess what settings they Rx'd on the ST.
IPAP 17
EPAP 7
back up rate 9

That PS of 10 is going to trigger so many centrals that the machine will essentially be a ventilator and not a very comfortable one at that.
It will trigger boatloads of the very thing it is supposed to fix....geez.

Pugsy wrote: ↑

Tue Sep 17, 2019 4:27 pm

Hey PR....guess what settings they Rx'd on the ST.
IPAP 17
EPAP 7
back up rate 9

That PS of 10 is going to trigger so many centrals that the machine will essentially be a ventilator and not a very comfortable one at that.
It will trigger boatloads of the very thing it is supposed to fix....geez.

*facepalm* well, if they didn't have central apnea BEFORE that... certainly does now.

That would give *ME* centrals. (probably) .... I have done 8 before, during that acidosis episode that nearly killed me.

Greentree

Did I see you pounce on an ASV for sale?

Yes, you did Kate. You have sharp eyes! I have been having a very difficult time getting my health provider to communicate with my DME. My prescription for the ST machine was being held at the DME. No one told me what was going on until I called to see what the status was. Turns out the DME people don't understand why I need a ST or ASV and say they were not provided with enough information to justify to my insurance why they should pay for one. They have left messages with my provider and are not receiving a call back. I am telling them I do NOT want the ST and want an ASV but the wheels are grinding oh so slowly. It is very frustrating. DME is cherry picking my apap data and have culled out all the dates when I had around 5 or lower AHI. Well....what they don't know is that those days I was at my daughter's home at an elevation of 50 feet above sea level as opposed to mine at home which is nearer 2,000 ft. Last night here my AHI was around 13. So.....I decided to buy an ASV myself. That way I can try it out and hopefully with forum help I can get it dialed in well enough to see if it is the key to solving my treatment emergent central apnea. At that point I will hopefully be able to provide the DME with enough info for them to communicate with insurance and I can receive an ASV from them. Then I will use the one I bought as a backup or vice versa. It will not be arriving for another week or so, so I am still limping along with my current machine. These journeys of ours can certainly become lengthy and frustrating, can't they. Hope you are continuing to do well with your new machine.

Hello all,

I now have a brand new Air Curve 10 ASV to use! I have two nights of data to report. First night my AHI was 0.39! Second night was 1.59. I am so encouraged that I finally am able to get rid of the treatment emergent central apnea that I developed after beginning apap treatment in December of 2018. It has been a long road to get to this point, but I feel as though I am finally going to have better sleep and better health. My central apneas are now controlled by the ASV. I have a few hypopneas still rearing up, but will monitor things to see how all shakes out over a period of perhaps a couple of weeks or so.

The good news is that I have the machine. The bad news is that I had to self pay. Still no word from either my DME or health provider as to whether they have gotten their act together to provide Medicare with enough information to justify a machine for me.

I will keep you up to date on my progress on both fronts, but did want to share the good news thus far. Thanks to all who have worked to help me get here!