mis/adventures in BiPAP - a newbies journal

[timrous beastie]

[our "newly diagnosed" story starts here. now on to chapter 2...]

The AirCurve 10 ST-A that we purchased out of pocket was finally delivered on Monday. I had to chase the UPS truck around the neighborhood to retrieve it, due to a miscommunication... but I now have it in hand. Settings below were determined in consultation with the marvelous mensch of moderation, lgelb.

Edited to emphasize LGELB's CONTEXT/CAUTION as noted below: These specific "start low, go slow" settings were individually determined for my PALS health and circumstances, and are noted in detail here only for my own reference. -- beastie

* Mode iVAPS
* EPAP 4
* min PS 4, max 12
*** iBR disabled
* Target pt rate 8
* Target Va 1.5L/minute
* Ti max 1.9
* Ti min 0.7
* Rise time 400ms
* Trigger medium
* Cycle medium
* Height (in inches) 64
* Mask Full face
* Ramp Off
*** Humidity level 2
* All extraneous alarms off
* SmartStart off

Items marked with triple asterisks are those that vary from the starting points suggested in consult. Started lower on the humidity setting because our room air is not dry and we don't yet have climate tubing. Also, cannot disable iBR on this device in iVAPS mode as suggested (can only turn that on or off in ST mode), but the Target pt rate 8 that was suggested IS the lowest end of available iBR setting, so... is this a problem or not?

=========================
Monday afternoon, 04.22.2024
session run time: 25 minutes
=========================

We spent a few minutes (very few minutes) trying out the DreamWear fullface masks that we ordered with the AirCurve. We tried the Medium, and the Medium Wide. In both cases, my sweetie was sitting upright in his computer chair, and complained that the masks interfered with breathing thru his nose, and he looked really uncomfortable. By chance, our son had just rec'd a new shipment of his CPAP supplies, including new AirTouch F20 headgear and (medium) masks, so we decided to try that instead.

After fitting the AirTouch mask, my sweetie still had an issue with breathing thru nose, but not as bad as with the DreamWear. He wrote a couple of notes while still sitting upright in the computer chair: "After I start to inhale, it starts to send too much air (inhale)" ... "I'm breathing thru my mouth". I asked if that was a problem and he wrote "I don't know. Do people breathe thru their mouths?" He then added "I don't know if it this is too much air on the inhale." At my urging, he then tried positioning on couch, laying on his RIGHT side with his head on pillow and feet on the floor, as usual. He then wrote "I can breathe thru my nose on this side." He maintained that position for a little bit, just as a trial run. We did not use humidifier during this initial test.

BASIC stats: AirCurve idiot light for Mask Seal was GREEN

=========================
Monday evening, 04.22.2024
session run time: 1H 25m
=========================

According to my love's report about attempt to use the device on his own overnight: He got up from the recliner (where he starts his nightly sleep cycle) and put on the mask. He laid down on the couch on his LEFT side. He said it felt kind of weird, and that he was still kind of afraid of it. He stayed on his side and fell asleep after a bit. He woke up a little later... not sure why, whether it was bathroom urge, or the mask bothering him, or what... and took off mask/turned off device for the rest of the night. He said that the low level of humidity (we used setting 2) wasn't noticeable or problematic, but that the experience was still just weird. He said that it made him think about drowning, but as far as he could recall that seemed to be more just a thought than an actual sensation.

BASIC stats: AirCurve idiot light for Mask Seal was RED; Humidifier light was GREEN

=========================
Tuesday nap, 04.23.2024
session run time = 2 hours
=========================

2:20pm - Installed newly purchased SD card for eventual use with card reader & 3rd party software. Refitted the AirTouch F20 headgear and (medium) mask so that it wasn't pinching his nostrils quite as much. Sitting up on the couch without the hose attached, he said that he felt like he was getting about 20% use of right nostril and 50-60% use of left nostril. Still not ideal but better than yesterday.

2:25pm - Attached hose and started device. He remained in sitting position for about 10 minutes, then wrote note: "It feels different than it has before. Yesterday, it felt like it was pausing and then blowing air real hard. Now it waits for me to start to inhale and then it blows air."

2:35pm - He laid down on the couch on his LEFT side, head resting on pillow and with (per his usual) his legs hanging off the couch and feet on floor. He napped in that position for 2 hours, and appeared to be sleeping comfortably. He woke up when I unsuccessfully tried to slip CVS Health pulse oximeter onto his finger. (It was nearing time that I had planned to wake him anyway.) I took pulse ox after he sat up. When he removed his mask he said that he didn't notice feeling any different than usual (no better or worse) after a nap, but that (without NIV) he would usually wake up after 60-90 minutes, instead of sleeping 2 hours straight.

BASIC stats: %Sp02 started at 90, then settled around 93 * PRbpm 73 * AirCurve idiot lights for Mask Seal & Humidifier were both GREEN

=========================
Tuesday night, 04.23.2024
session run time = 1H 30m
=========================

9:50pm - He settled into recliner (his usual starting place for the night) with back tilted slightly and feet down. He only had mask/device on for a few minutes when he realized he had forgotten several bedtime items (azelastine nasal spray, dulcolax, and prepping *PM dose of riluzole). He decided after getting those to wait on using bipap until he moved to sofa later, and said he might also do another round of nebulizer before that.

11:45pm - My sweetie made a bathroom trip, then put on his mask and laid down on the sofa on his RIGHT side.

12:30am - I passed by the living room. Sweetie was still on the sofa, now laying on his LEFT side. He leveraged himself up on one elbow and said "I can't go to sleep." We chatted for a minute and I asked him to give it another hour or so, then discontinue NIV if he was still awake.

1:00am - My love came into bedroom and said that he's stopping NIV use for the moment because he still can't sleep. He said that it seems like maybe the ryhthm changes when he starts to fall asleep and that wakes him back up. Also said it was maybe making a wheezing sound. I checked the idiot lights and-- no surprise-- Mask Seal was RED. Not sure what changed between successful nap earlier today, and this round.

Sweetie tried again at some point overnight, but only briefly. Same problem as earlier, clouldn't sleep.

BASIC stats: %Sp02 at 92, then * PRbpm 78 * AirCurve idiot light for Mask Seal was RED; Humidifier light was GREEN

==================

*Side note about riluzole: Taking the AM dose on empty stomach is easy, the PM dose is more of a problem. We eat dinner around 7pm, then my sweetie has ice cream & cookies, and sometimes continues to snack on other stuff before (typically) 10pm bedtime. For now, in order to get to the 2-hour after meals interval, he's putting the med bottle on his side table to take when he wakes up for his first bathroom trip of the night.

 

[lgelb]

For anyone reading, note that the target Va is height/weight-dependent, so anyone else, please ask me before setting it. Also, Va, used by ResMed, is calculated differently than Vt, which is what Respironics machines use. And of course, height entered should be actual height, likewise mask type and tubing.

As context, these were the starting points for beastie's PALS, but will likely not be the final settings. "Start low, go slow." Some of the settings were based on other health conditions, etc.

Also note that "all alarms off" doesn't turn off alarms like a power interruption, which is always on for safety.

Being unable to disable iBR is not a problem. It's superseded by the low target rate.

Clogged nostrils should improve with ClimateLine tubing (for the independent adjustment of heat and humidity, as we do in everyday life), but a nasal steroid morning and night (I always recommend triamcinolone/Nasacort) could be a good add-on as well, as the last nose spray of the night.

When a mask is leaking on one's side, it can help to reseal it while actually on the favorite side for sleeping (the same is true for back sleepers, of course -- the main thing is to try the fitting in the actual sleep position, not sitting up) -- don't overtighten, let the seal form itself with the suction so the mask is nestled on the face, not digging into it. Also, keep the straps set at the best size instead of always redoing them, so remove the mask with the clips, which will loosen up with use. There are also quick-connect clips and alternative headgear for some masks.

And sometimes a mask is just the wrong shape or size. That's why there are so many masks...

If he wears a Fitbit or smart watch, his pulse ox can be enabled automatically to record so you don't need to slip on the pulse oximeter (which honestly I would not do unless he shows signs of respiratory distress; sleep and getting used to the BiPAP are more important), and wearables provide lots of other interesting sleep/daily data as well, including pulse, sleep quality, and respiratory rate. I believe that all PALS should consider one (Inspire 3 = $99), with a cloth band for comfort.

But the machine itself provides some good data, of course, that can help refine the settings, and if it has an SD card slot, by all means throw one in there to keep more history.

 

[timrous beastie]

*sigh*... am struggling here to find balance between my over wordy writing/processing style and the needs and norms of the forum. most of response below was drafted before the topic went temporarily into the corn field. will try to keep things shorter in the future.

Being unable to disable iBR is not a problem. It's superseded by the low target rate.

that's what i figured in reviewing the tech manual info about iBR, but i appreciate the confirmation.

Clogged nostrils ... ClimateLine tubing ... nasal steroid morning and night [triamcinolone/Nasacort]

recommendations noted.

the main thing is to try the fitting in the actual sleep position

sweetie's sleep positions are all over the map: starts sitting up in recliner (head back a little, feet always down), moves to couch (head on pillow, feet still always hanging down) and often switches from one side to the other between bathroom trips, then sometimes moves back to the recliner.

DULY NOTED, though, about having him reposition mask to face for each new position.

don't overtighten, let the seal form itself with the suction so the mask is nestled on the face, not digging into it

was really pleased with the successful two hour nap on Tuesday, but... trial and error, trial and error.

the DME vendor RRT is bringing the Breas Vivo for set-up tomorrow morning, so we will (also) have heated tubing and more mask options in hand. will do private follow-up later about "start low, go slow" Breas settings/operation.

for now, assuming compatability of connections, we will continue with the AirCurve at least thru our upcoming film festival staycation week.

... Fitbit or smart watch ... (Inspire 3 = $99), with a cloth band for comfort ...

my love does have some kind of cheapie smart watch. will have to check on capabilities, learn how to access data.

the machine itself provides some good data, of course, that can help refine the settings

i found OSCAR online - should we try using that or is there some other 3rd party software you'd recommend for analyzing the data?

 

[lgelb]

OSCAR is fine. It's a successor to Sleepyhead, if anyone used or is using the latter. Sleepyhead is no longer being developed. That said, it's designed for people with primary sleep apnea, not PALS, so the events data is not interpretable the same way.

 

[timrous beastie]

Breas Vivo 45LS

PCV (A+TgV) – Assisted Pressure Controlled Ventilation with Target Volume
Settings screen, as determined by the RRT during 1st home visit, 04/25/2024:

Insp. Pressure .................. 13.0 cmH20
PEEP ....................................... 5.0 cmH20
Breath Rate ............................... 14 bpm
Insp. Time .......................................... 1.4s
I:E calc ................................................ 1:2.1
Rise Time ................................................ 4
Insp. Trigger ........................................... 1
Target Volume ........................... 450 ml
Max Pressure ................... 20.0 cmH20
Min Pressure .................... 12.0 cmH20
Auto-EPAP .......................................... Off

Still using same AirTouch F20 full face mask for now.

My love did not enjoy the brief period of testing and adjusting, and commented on the sensations being different from the AirCurve we've been using for a few days now. The RRT (nice enough fella, but constrained by the Rx as written) assured us that this was to be expected, and would mostly be a matter of getting accustomed to the change.

We told RRT we plan to wait until after our week-long staycation to start using the Vivo.

#overwhelmed

 

[timrous beastie]

in theory, via Google, i know how to get into the Vivo clinical settings menu.

in theory, i suppose, i could use the "Profile 2" space to set up different parameters, in consult with lgelb... leaving the "official" specs intact.

in fact, though, anxiety about ALL OF IT is kicking my beastie b*tt.

------

sidenote: my love had a successful 1 hour no leaks nap with the AirCurve this afternoon.

 

[lgelb]

I would get comfy w/ the AirCurve, which was designed as your home machine anyway, before jumping into the Breas. Kind of like veering between hot and cold showers to try to juggle them so early in the game, especially bc the RT's settings for the Breas are way different than the ones I advised for the ST-A. He clearly started with a different target in mind.

I can help you get into the Breas menu, etc. to match where you are with the AirCurve, but since you are still fine-tuning the latter, it makes more sense to finish that and begin using it for real. Because, if nothing else, an awake titration [sic] will always require adjustment for sleep and he is not doing nights with it yet.

 

[timrous beastie]

i now have additional tools for monitoring what's happening with the AirCurve:

- learned how to turn on the "Essentials Plus" display on device.
now get more than idiot lights-- yay!

- learned that i can toggle that display between different reporting periods
single day, or week or month

- installed OSCAR software & exported tues/wed/thurs data from the SD card
dunno yet what to look at there and how to understand what is/isn't applicable

- added ResMed myAir app to my phone
probably not very useful compared to above data sources

also did a 10 minute test of using the AirFit P10 Nasal Pillows; might work for PALS

current question: what are the top 3-4 pieces of data that i should be monitoring?

 

[lgelb]

Va, RR, and time on machine.

 

[timrous beastie]

Va? stands for "alveolar ventilation"? item with (initial) Target Va 1.5L/minute setting?

aaargh. Va doesn't seem to be tracked in OSCAR, and it's not one of the values listed on the AirCurve's "Essentials Plus" Sleep Report screens that i have been scrolling thru and grabbing post-session data from each day. the ONLY place that i've seen it listed so far was during our 10 minute trial of the Nasal Pillows this (Saturday) morning-- when i happened to discover that i could bring up some different monitoring screens WHILE the device is in operation.

sidenote about the specific numbers below: i had forgotten to change device mask setting from "full face" to "nasal pillows" during our brief test. my bad.

Monitoring screen 1/4: displayed "iVAPS ...... PS 4.0" above green bar that fills & empties with breathing, with 4.0 marked near left side and 8.0 at far right side. also shows wifi symbol & humidifier setting

Monitoring screen 4/4: displayed only "No Alarms"

Monitoring screen 2/4: same green bar data, plus...

Leak ... 0 *** RR ... 16
MV ... 5.6 *** Vt ... 342
Va ... 5.5 *** TgVa ... 1.5

Monitoring screen 3/4: same shifting green bar, but with a blank flag above it to the left and a "Ti Min" flag above it to the right (in that moment), plus...

Ti Min ... 0.7 *** Ti Max ... 1.9
I : E ... 1:2.8 *** Ti ... 0.8
Spont Trig ... 100%
Spont Cyc ... 85%

i only grabbed numbers in a single instant, and i assume that the variables being monitored fluctuate constantly throughout the session, right? so how can i track Va???

i SO MUCH appreciate your help with all this, Laurie. it's been a long day of film festing and i am a very mush-brained beastie right now.

 

[lgelb]

We want spontaneous cycling to be 100%, so I'd change Ti max to 2.5.

Tracking Va (yes, we set target Va to 1.5L/min) on the monitor from time to time is fine.

 

[timrous beastie]

thanks.

have sent email with a bit more info.

 

[Megatron]

I was on cpap for 20 years before being diagnosed with ALS 2 years ago. I became quite alarmed reading the above, as it appeared there is no sleep specialist or pulmonologist involved. Forgive me if I'm wrong, but you are playing with fire if you don't have a medical specialist establishing the settings on the Air Curve, which is an incredibly sophisticated machine. I'm now on an Astral 150. Find an expert immediately, please.

 

[lgelb]

FYI:
1) The AirCurve is the AC power-only version of the Astral, though it can be "portable" with a third-party external battery. So it's pretty comparable to the Astral, Trilogy, or any iVAPS or AVAPS BiPAP, though features/motors vary somewhat and as regular readers know, I have always preached ResMed over Respironics.

The Breas, Resvent, and Luisa lines are available in the US as well, depending on which DME you have and what their parent/GPO contracts are, or if you're willing to spend your own cash (for at-home BiPAPs, often less than what your combined copays would be).

2) I'd argue that PALS are "playing with fire" to blindly accept the settings from "medical specialists," whose only algorithm for determining IPAP ranges are Vt or Va calculators that use height and arbitrary choices of mL/kg volume and respiratory rate as the three terms in the equation.

These calculators cannot know which muscles are weak/which muscles are bearing the load instead, and other medical conditions, and have prematurely compromised the respiratory function of more PALS than I can count just from my own inbox.

The "learn targets" process some machines offer is pointless in the ALS setting, where upright vs. supine position, how recently the PALS has eaten, and other variables make a big difference. That would be like setting cruise control based on the last time you pulled into your driveway.

For sure, there are more variables in titration than the initial settings, which is as far as most RTs, pulmos, and neurologists go. In fairness, there's a shortage of all 3 and they get paid very little if at all from payors for followups. The money is in new setups.

3) In ALS, there is no relationship among PFT results, time since dx, site of onset, age, gender and optimal BiPAP settings. The lowest-risk version of empiric titration is "start low," often way lower than the rx that are written for PALS and then entered into the machines they are delivered.

Moreover, most PALS are never re-evaluated to ascertain if they have the right synchronization between their natural breathing and the machine (Ti, trigger, cycle, AVAPS rate/rise time, other settings).

There can be only lower risk in a lower-set baseline with personalized titration and synch/comfort settings.

4) Anyone who wants to know how and why I am qualified to advise on empiric titration/other settings adjustment can ask me directly. I posted on this previously.

I hope the Astral is working well for you, Megatron; it's a great machine.

 

[timrous beastie]

Thanks for your concern, Megatron, but my PALS hasn't had 20+ years of getting used to NIV, finding & fitting satisfactory masks, etc, so that's one hurdle we're working to overcome by following the "start low, go slow" advice. Too, given the frustrations and miscommunications that I outlined in my intro thread, in dealing with the office of my PALS pre-Dx pulmonologist-- Laurie's responsiveness and attention to detail blows theirs right out of the water. AFAIC, her expertise is invaluable, and well documented.

*sigh*... I started this topic hoping to (a) process and keep track of our BiPAP journey for my own benefit and (b) share what I was learning along the way in case it might be of help to others new to using BiPAP/NIV. I may need to re-evaluate one or both of those goals.

------

new email sent, Laurie. IF you see any broad stroke themes in the data that i've included there that you think might be appropriate to address in this thread, for the benefit of other newbs, please feel free to do so. either way, and again, thank you!