Central Apnea and Bi-Level ASV Help Needed

Hello. I was diagnosed with severe centrals in 2014, started on Bi-Level therapy right away, and have been happily not snoring and sleeping restfully until about 6 months ago when my old Resmed S9 VPap Adapt ASV began giving me trouble. Long story short, with the shortage of machines and exorbitant price of these units up here in Canada ($5000+++), I ended up purchasing an identical "reconditioned" machine out of the US. The vendor was to set it up for me and I sent my original sleep study which prescribes "BiPap pressure is 16/6 cm H2O with a back up rate of 12". (Note: Was adjusted to 18 after original therapy began).

When the machine arrived, something was clearly wrong - it blasted me with huge gusts of air at random times (I was wide awake and breathing normally!) and was nothing like my previous unit's settings. I eventually got my old respiratory therapist to look at it and they said that it had been "set up backwards". They made some changes to the settings and sent me on my way. I'll post photos below, as follows: #1 is the original machine, #2 is as the refurbished one arrived, #3 is as it is currently set. Things still aren't right. The best I can explain is that it doesn't "feel" like my original therapy felt. Though it is only reading 7 to 8 AHI, I have trouble falling asleep because as soon as I start to doze, I quit breathing and get the back-up blast. One other way it doesn't feel "right" is if I try to talk.... on my old machine, this was doable, but difficult, and took some practice. On this new one, I can talk as normal. I don't have to "fight the pressure". That doesn't seem right.

Anyway, the gist of it is that I'm not happily sleeping restfully and I don't know why. I never paid much attention before because it WORKED for 9 years. Now, not so much. My days are miserable, unrested, and I believe I am even having "awake apneas". (Is that a thing? Feels like it!) To top it off, I've started having trouble breathing during the day - shortness of breath - and was just diagnosed with fluid on the lungs and congestive heart failure. I can't help but wonder if it is all related in some way???

I can tell there are folks here with far greater understanding of all this than me, so I would appreciate if you could look at my settings and tell me if something looks "off'", or if you have any other ideas which might help me get back to "normal". Thank-you!

OK, I guess I can't add photos, so here's what the settings say:
Original Machine: Mode - ASV; EPAP - 6; MIN PS 6; MAX PS 18; MAX Ramp 30 min; Start EPAP - 6
Purchased Machine: Mode - ASV/AUTO; MIN EPAP 6; MAX EPAP 15; MIN PS - 2; MAX PS - 8; MAX Ramp 15 min; Start EPAP - 5
Current Settings: Mode - ASV; EPAP - 6; MIN PS - 6; MAX PS - 16; MAX Ramp - 15 min; Start EPAP - 6

What brand and exact model name machine did you get?

Hi Pugsy. Thanks for looking at my post. Sorry that I wasn't clear - my "new" machine is exactly the same as my old machine - a Resmed S9 VPap Adapt ASV. With the H5i humidifier (also the same as before). I use the Swift FX nasal pillows.

MRC'69 wrote: ↑

Thu Oct 13, 2022 11:05 pm

OK, I guess I can't add photos, so here's what the settings say:
Original Machine: Mode - ASV; EPAP - 6; MIN PS 6; MAX PS 18; MAX Ramp 30 min; Start EPAP - 6
Purchased Machine: Mode - ASV/AUTO; MIN EPAP 6; MAX EPAP 15; MIN PS - 2; MAX PS - 8; MAX Ramp 15 min; Start EPAP - 5
Current Settings: Mode - ASV; EPAP - 6; MIN PS - 6; MAX PS - 16; MAX Ramp - 15 min; Start EPAP - 6

Use imgur.com to post pics.

I'll just throw in some thoughts, though it would be better when we can see your Oscar daily pages. The forum picture storage is full and won't accept any more uploads. So you need to upload your pictures to a service such as imgur.com then post a link here.

The fact your new machine was giving you such a hard time is probably due to the setting - your original and current modes are "ASV" while your new machine was set up in 'ASV Auto'. In ASV mode the EPAP (exhale pressure) is fixed - in your case it was fixed at 6 cmH2O. In ASV Auto mode, the EPAP will move through a range depending on whether obstructive events are detected. In your case the EPAP could range from 6 to 15. Add the pressure support (PS) on that and you could have an inhale pressure up to 15 + 16 = 31 cmH2O. That will max out the machine's capacity and will give you a very high pressure.

Your current settings are pretty much what you started with, except that the PSmax has gone down from 18 to 16 - a minimal difference in the scheme of things.

You've been on this therapy for 8 years - it's quite possible that things have changed in your body over that period of time, quite apart from the different machine. For instance, your fluid on the lungs and congestive heart failure may be things that have happened to you quite separate from your machine.

Regarding the heart failure, ASV therapy is contraindicated for patients with severe congestive heart failure and left ventricle ejection fraction less than 45%. This arises out of a study done about 5 years ago which indicated that severely ill people with low LVEF have a higher all-cause death rate than people with normal heart conditions. This study has been very severely criticised, but as far as I know, that contraindication is still in place. Regardless of the quality of the original study, this is definitely something you should discuss with your health team. I emphasise the word 'team' - this needs a multidisciplinary approach.

The blast of air you receive when falling asleep is not uncommon. You could set your ramp back to 30 minutes so that you're fully asleep when the machine takes charge. Alternatively, leave the ramp where it is and if the machine gives you a blast, just blast it right back! If you exhale forcefully in that situation the machine will back off and minimise pressures for a period of time.

Hope this helps, and please let's see your Oscar daily pages.

Respirator99 wrote: ↑

Sat Oct 15, 2022 3:15 am

Regarding the heart failure, ASV therapy is contraindicated for patients with severe congestive heart failure and left ventricle ejection fraction less than 35%.

45%.

Rubicon wrote: ↑

Sat Oct 15, 2022 3:34 am

Respirator99 wrote: ↑

Sat Oct 15, 2022 3:15 am

Regarding the heart failure, ASV therapy is contraindicated for patients with severe congestive heart failure and left ventricle ejection fraction less than 35%.

45%.

Thanks - corrected.

Respirator99 wrote: ↑

Sat Oct 15, 2022 3:15 am

This arises out of a study done about 5 years ago which indicated that severely ill people with low LVEF have a higher all-cause death rate than people with normal heart conditions.

A trash study
https://journal.chestnet.org/article/S0 ... 5/fulltext
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6277244/

palerider wrote: ↑

Sat Oct 15, 2022 8:12 am

Respirator99 wrote: ↑

Sat Oct 15, 2022 3:15 am

This arises out of a study done about 5 years ago which indicated that severely ill people with low LVEF have a higher all-cause death rate than people with normal heart conditions.

A trash study
https://journal.chestnet.org/article/S0 ... 5/fulltext
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6277244/

Kinda makes one wonder about the peers that are reviewing these in peer reviewed journals.

palerider wrote: ↑

Sat Oct 15, 2022 8:12 am

Respirator99 wrote: ↑

Sat Oct 15, 2022 3:15 am

This arises out of a study done about 5 years ago which indicated that severely ill people with low LVEF have a higher all-cause death rate than people with normal heart conditions.

A trash study
https://journal.chestnet.org/article/S0 ... 5/fulltext
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6277244/

Yes, quite possibly. But can you assure us that the contraindication has been lifted? I don't believe it has (at least I can't find anything on-line), and the OP needs to be aware of the fact the study existed so he can discuss with his medical team. I for one would be delighted to see an official notice of retraction. Failing that I believe we are duty bound to advise people who come here for advice - especially if those people now have congestive heart failure.

Respirator99 wrote: ↑

Sat Oct 15, 2022 8:57 am

palerider wrote: ↑

Sat Oct 15, 2022 8:12 am

Respirator99 wrote: ↑

Sat Oct 15, 2022 3:15 am

This arises out of a study done about 5 years ago which indicated that severely ill people with low LVEF have a higher all-cause death rate than people with normal heart conditions.

A trash study
https://journal.chestnet.org/article/S0 ... 5/fulltext
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6277244/

Yes, quite possibly. But can you assure us that the contraindication has been lifted? I don't believe it has (at least I can't find anything on-line), and the OP needs to be aware of the fact the study existed so he can discuss with his medical team. I for one would be delighted to see an official notice of retraction. Failing that I believe we are duty bound to advise people who come here for advice - especially if those people now have congestive heart failure.

Eggs, are they good for you or bad for you? heated debate over the years.

Yes, a *FEW* extra people died on one side of that so called "study", people that were already near death, and weren't using *modern* machines, and weren't even using them anywhere near adequately.

What's the alternative to an ASV for someone with heart failure, to treat their CSR? an ST machine? it's likely *worse*, (of course, nobody's done any studies on the ancient 'tech') because it has to have high PS on every breath in order to effectively ventilate someone, which will just exacerbate central apnea.

No thank you.

Wow! Great discussion! I actually HAD looked at that study (and some of the related criticism) and noted it for later follow up, if and when that opportunity ever comes up. See.... you mention "health care team" and "interdisciplinary" and that is something I believe I truly need, but just isn't available to me. Our Canadian health care system is terribly fractured and people like me are falling through the cracks and ending up turning to random folks on the internet for help with major medical issues (besides the CSA and CHF, I've got MS, Chiari and OA - just about the whole damn alphabet!). If we're lucky, resourceful and somewhat discerning, we might learn things that help us. If we're not, we could end up injecting ourselves with horse dewormer. But... I'm getting off-track...

Respirator99 wrote:
You've been on this therapy for 8 years - it's quite possible that things have changed in your body over that period of time

You're right about that - I'm 85 lbs lighter and 2 years cigarette free, which I'm sure might impact my apneas (and so it really does suck that after all that effort, the CHF shows up NOW!) Could the inadequate (failing, and then later, set up incorrectly) machines have anything to do with that, do you think? I tried to look for a link between PAP therapy and CHF, but didn't come across anything. Getting a sleep study done here is a two year wait right now, and nobody (sleep specialists, respiratory therapists, PAP vendors) will talk to me without one. Regardless... it sounds like my current settings would be fine IF nothing major has changed. I'm going to try the suggestion of changing the ramp time and see if that helps. If I could fall asleep like I used to (as my head hit the pillow) I would probably feel a whole lot better.

Unfortunately, I don't know what my "Oscar daily pages" are! Is the S9 capable of producing these? It has an SD card, but I personally never looked at the data when everything was working, and haven't reported it to anyone in YEARS. If you can refer me to a resource that can teach me how to extract that data I will make that happen (once I extract myself from the rabbit hole I will most assuredly tumble down in the process!). In the meantime, I will figure out this imgur thing. Apparently Facebook has made things too easy for us!

Thank-you so much for your comments and input! Anyone in Canada with a health issue these days feels like they are screaming into a void. Hearing voices back is a blessed relief.

MRC'69 wrote: ↑

Sun Oct 16, 2022 2:02 am

Unfortunately, I don't know what my "Oscar daily pages" are! Is the S9 capable of producing these? It has an SD card

Yes, your machine records lots of data on that SD card.
OSCAR is an opne source program created by forum members that lets you read the data.
You'll find the necessary info in Repirator's signature.

MRC'69 wrote: ↑

Thu Oct 13, 2022 11:05 pm

To top it off, I've started having trouble breathing during the day - shortness of breath - and was just diagnosed with fluid on the lungs and congestive heart failure. I can't help but wonder if it is all related in some way??

Very clearly, your current settings are either perfectly fine and effective or doing absolutely nothing for you.

Did y7ou know that

Heart failure with preserved ejection fraction, also referred to as diastolic heart failure, causes almost one-half of the 5 million cases of heart failure in the United States.

If you are diagnosed with CHF you must have had an echo. What's your EF?

Read pages 3-4:

https://document.resmed.com/documents/p ... EN-LOW.pdf

IMO, SERVE-HF was a valid study. I mean, it's ResMed itself that sponsored it.

MRC'69 wrote: ↑

Sun Oct 16, 2022 2:02 am

I tried to look for a link between PAP therapy and CHF, but didn't come across anything.

[Look of surprise and amazement] That research was done when I was knee-high to an octopus. Research CANPAP. CPAP don't help.

If you are going to DIY you absolutely need an oximeter.

Out of historical curiosity, do you have the initial sleep study?

In summary, clearly, nothing is clear.