Feeling like I cannot breathe

[vgrando]

I was surprised that she ordered a ventilator. She prescribed that it be set to a Tidal Volume of 400. Mine, while I sleep, varies from 260 to 320 while I am actually asleep even on my Bipap Auto Curve 19 Auto. My weakened diaphragm is the issue, and it will get worse as I age and my Cervical spine continues to deteriorate. However,  I am correct that the trilogy is being discontinued. I cannot afford to buy one of these out of pocket. They run up to $15,000. To get insurance to pay, I would have to have a titration study with a C02 of 52, and I had a C02 of 51. However, I wanted to get an AirCurve11 ASV meant to treat central apneas. My recent titration study showed that I had 60 obstructive, 57 central, and 21 mixed apneas. Having 50% cental/complex apneas or more should qualify for one for Medicare. But I can afford to pay for one out of pocket. They just came out with the AirCurve11 ASV, which is more streamlined and lighter.  

Do you know if AirCurve11 ASV would help with Tidal volume?

Thank you for all your help!

[Sleeprider]

The ASV is not recommended for hypoventilation because it establishes the volume and rate targets from the last 90 second average respiration, and there is no setting to over-ride that automatic target. As a result, the use of the Resmed ASV in hypoventilation patients is not recommended because volumes can fall below the recommended rate. The Resmed Aircurve ST-A has an iVAPS algorithm that is intended to resolve both volume and rate issues with an adaptive pressure support. Quite a bit harder to set up this machine. You can read about both of these devices and their intended use in the Resmed Sleep Lab Titration guide https://www.resmed.com/us/dam/documents/...er_eng.pdf

[SarcasticDave94]

I'm not indicating I'd be much help in suggesting settings on either Astral or ST-A, however I think ST-A may be both easier to afford and setup. I have borrowed an ST-A for about a month a few years ago, and I was able to get decent setup in a few days. Pressure mostly similar to what I was running in ASV and then edits to backup breath rate. Then I started to expand timing Max a bit. Again only what I did for myself.

I think I have the ST-A and Astral clinical manuals with Astral having more to digest.

Edit... Even though V in ASV is ventilator, it's still in the CPAP class, because its ventilaton action is just blowing hard to induce a breath during CA. It will not really assist in breathing like true ventilators, nor are there any timing controls on ASV. So any breath time issue will not be addressed.

[vgrando]

Thank you both! I agree.

My concern is that for years, I have had documented atelectasis of the lower lungs without a documented cause for several years now. I never have had pneumonia. The MDs seem to ignore this even though my diaphragm, which is elevated on the right side, and my scoliosis restrict my breathing while at rest and at sleep.

I think that my neuromuscular issues will get worse as I age, which will lead to increased respiratory issues. Hopefully, having ventilation support while I sleep will help.

[SarcasticDave94]

Understood. In that case, I'm inclined to think true ventilator class like ResMed Astral 100 or 150 will be your best bet. If Philips Respironics is still an option, (saying so due to the ban of other machines in the US) there's the Trilogy and Trilogy Evo models.

Note from my experience in general and info from my Lincare RT about machines. If you're used to Philips Respironics it may be the better feeling, and vice versa with ResMed. Apparently there's a perceptive specific "feel" that will be familiar or foreign to you, either aiding or hindering successful beginning with vents.

[vgrando]

I had a new sleep study on an ASV machine. During the study, I had no central or obstructive apneas with only a few hypopneas. I desaturated for 92 minutes and was put on 02. I found breathing very comfortable on the ASV machine. 

The MD recommended a ventilator. The respiratory company uses Trilogy. What do you think?

[Jay51]

The ASV charts look ok IMO.  A little low tidal volume median, but if you are tolerating the ASV well, then congratulations.  

The Trilogy ventilator would make sure every breath you take is at least, "x" (numerical digit) tidal volume (would keep your tidal volume higher).  It might take some getting used to though.  

You have put a lot of effort into this Victoria.  Probably, the only way to know if the Trilogy would be better for you would be to trial it yourself.  If you could trial the Trilogy, then you would know which one you like better.  You may need supplemental oxygen with both of them, but you will find out which one you like better this way.  I have an ASV also.

I remember from your history that you have complex apnea (both OSA and CSA) and have been diagnosed with hypoventilation also.

Edit:  My Trilogy was recently replaced by a Lowenstein Luisa by my DME (like Dave talks about below).

[SarcasticDave94]

I was under the impression even the Philips Respironics Trilogy would be banned in the US sooner or later. Myself, I'd rather not begin investing in one machine for it to taken away later.

I'm biased towards ResMed, in which case their similar device is the Astral, in 100 and 150. The Astral 150 includes oxygen monitoring, which is what I'd go for.

Anything less than something like a ResMed in increasing capabilities, ST-A, Stellar, or Astral will not help with ventilation. Other brands that have similar devices included here, just mentioning specific ResMed units.

Of note, Stellar is a tweener ventilator, and probably won't even be mentioned outside here. I know I wasn't hearing it with my RT when they said I needed a ventilator. It was Trilogy or Astral.

Again if me, I'd likely get a different brand than Philips Respironics Trilogy. And if that means to make that happen, I'll become a customer of another DME within the insurance network.

[vgrando]

Yes, Trilogy is discontinued. I hear the Trilogy Evo is new.

However, based on the doctor's orders added below, I think a ResMed AirSense 10 ASV would work. What do you think?

[Jay51]

It is totally your choice on how you want to proceed from here.  For me personally, it took actually trying a couple of ventilators to figure out which one worked best for me personally (I have my own ASV also; so I could compare the ventilators to the ASV also).  

Hopefully this is a good situation to be in for you.  The ASV titration went well (and you slept well with it); and you have an option by your Dr. to trial a ventilator also.  

If you like the ASV, you can stick with it (according to the Dr.'s order that you uploaded) and you don't even have to trial a ventilator.  That is your choice again.  The Dr.'s orders give a 30 day follow up also - so it seems like you have 30 days to decide (and be evaluated by data on how well the ASV is working for you).  

You have navigated through the maze successfully to get to this point, and you don't have many more decisions to make at this point.  Very well done.