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Intro / O2 Drops after PE; puzzling through Oscar/SP02 data
#11
RE: Intro / O2 Drops after PE; puzzling through Oscar/SP02 data
Current settings on my machine:

Therapy:
Mode: VAuto
Max IPap: 18
Min EPAP: 9
PS: 3.6
Ti Max: 2.0s
Ti Min: 0.3s
Trigger: High
Cycle: Med
Mask: Nasal

Comfort
Ramp Time: 25m
Start EPAP: 4.0
Climate Ctrl: Auto
Tube Temp: Auto

Accessories:
AB Filter: No

Options:
Essentials: Plus
Leak Alert: On
Smart Start: Off (greyed out)

As far as diagnostics I  can provide a bit more on history if it might help...
  • Cardiac evaluation, only thing noted was low bp (which was present prior to PE & most of my life, ~85/40 at rest, white coat readings of 90/60, oddly pain drops my BP/HR). Cardiac did some sort of bubble test / oxygen test - but the name is escaping me at the moment - and a VA nuclear scan trying to see if there was something odd with how my blood was oxygenating across my heart, but they didn't find anything wrong there either.
  • Repeat CT & CT with contrast show no recurrent pleural effusion or PEs, but scarring on Left lung where pleural effusion was located.
  • Pain Mgmt tried buprenorphine to reduce pain but I reacted extremely poorly to it, leery to try other medications because of O2 drops. Pulmonologist and Pain Mgmt keep going back and forth about risks of putting me on anything.   
  • Pulmonologist suspects that I may be guarding due to pain caused by taking a full breath / caught in a catch 22 situation (they can't manage the pain, I can't breathe fully).
  • Ultrasound rechecked for signs of a DVT and didn't find one.
Current Treatment Plan:
  • Blood thinners to prevent PE reoccurrence.
  • BiPAP & Full face mask & 5L 02 at night (rather than CPAP & Nasal mask per Quacky sleep doctor)
  • Supplemental O2 as needed during the day for O2 crashes (rarely needed, usually stat > 90%)
  • Pulmonologist wants a diaphragm test and an overnight oximeter test done but likely won't be scheduled with the current COVID situation.  
  • He also wanted Pain management to try and treat the pain (but they are against doing so because of O2 destating).
  • Beat head against the wall because I've been stuck in the same place for going on 3 months now... sigh.
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#12
RE: Intro / O2 Drops after PE; puzzling through Oscar/SP02 data
This is helpful. No changes for now, but please be sure to include the start of therapy in the next chart so we can see what is happening during ramp. All of the Oscar charts posted have a zoomed view that excludes this.
Sleeprider
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#13
RE: Intro / O2 Drops after PE; puzzling through Oscar/SP02 data
Fairly stable night again with more leaks than I would like and a morning O2 crash ~8:16 AM.  O2 alarm woke me reporting 54% O2 stat crash, a seperate pulse ox fingertip verification only said 63% (still too low for my liking).  When the alarm woke me the "stabby" pain was also present,  along with the general soreness (feeling like I've been overinflated - in the tolerable range all things considered).  O2 crash event seems to line up with #007 clear airway event.


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#14
RE: Intro / O2 Drops after PE; puzzling through Oscar/SP02 data
The CA event 007 appears to be an arousal preceding a breath-hold (note how the flow moves above zero abut no exhale. The movement chart seems to confirm arousal. You have two oxygen traces and the severity of that desaturation is not corroborated by the other trace. Overall, pressure remains fairly steady and AHI remains acceptable and below what you started with.

If you want to try less pressure support, you can try PS 3.0 and see if you get better comfort. I want to maintain EPAP minimum pressure for oxygenation. Do you think more humidity in your air would help? If so, we can change humidity settings to Manual with humidity at 4 and tube temperature at 80 F.
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

____________________________________________
Download OSCAR Software
Soft Cervical Collar
Optimizing Therapy
Organize your OSCAR Charts
Attaching Files
Mask Primer
How To Deal With Equipment Supplier


INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#15
RE: Intro / O2 Drops after PE; puzzling through Oscar/SP02 data
Just one thing I'd like to comment on, as it may be helpful. I'm not claiming you and I have the same lung issues or anything BTW. I do have COPD, current stage is GOLD 1 (the lowest) but I do have several attributes of GOLD 2, the next highest rating. I take a yearly PFT to track it. Just a brief idea of what I've got going on there.

Now, the aspect I wanted to get to. The soreness issue. For me, it happened when I first went on the BPAP and then again when starting on the ASV. Again, in my case it was due to the machine inflating the lungs more than I would do in my normal respiration. It was tied directly to my COPD.

I am not saying you have COPD. I think it's possible your PE may have given you a respiratory breathing pattern that is counter to what the slightly pressurized CPAP machines will induce. In other words, normally now, maybe to avoid pain or other discomfort, you don't inhale deeply. The CPAP machine is forcing it a bit onto that which you're not used to. If we assume I'm correct, this soreness will pass very shortly, probably within the week.

Best to ya.
Dave

OSCAR
Standard OSCAR Chart Order
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Soft Cervical Collar Wiki
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#16
RE: Intro / O2 Drops after PE; puzzling through Oscar/SP02 data
Oxygen traces are coming from the same program.. one showing the severe stat drop is the source file android app that generates the alarm, the one not showing is the Sleep Cloud export from the same program.  The source data I can see 2-second interval recordings in my google drive CVS format, but the SleepCloud graph is presumably using averages to make the graphs.  

I am graphing nightly with a both a BM2000 (Barry medical stress alert oximeter watch/Sleep by Android app)  and the Wellue O2Ring or SleepU (on opposite hands).  If the alarm goes off and I am coherent enough I grab my Autsmile Rechargeable 3-in-1 Pulse 0ximeter and try and do a verification of whatever the alarm reported.

I thought I had a CMS50F on order, but that was a horrible experience with a supplier not on the list (Supplier #19 seems not to be working since COVID thing).  I tried to place an order for an OSCAR compatible one through Newegg (out of stock) and Amazon (out of stock) a couple of times.  I have Wellue O2Ring & SleepU as well but am suspicious of there reportings.   Like this morning destat.. SleepU did not show a blip at all (nothing below 95% between 8 and 8:30am), yet BM2000 and the Autsmile both showed readings < 75%.

I feel like this is the never-ending story... but backing up a bit. Post PE,  I was not sleeping for more than 3-4h at a time, and when I was sleeping I was waking up with severe stabby pain feeling like I couldn't breathe/someone was sitting on my chest. I was referred to my quacky sleep doctor, who looked at my CPAP AHI (averaging pre PE of < 3, post PE of 8-10) and said I was under 10 and shooed me away to the pulmonologist.

It took me over a month to get an appointment with the pulmonologist, so I started my accumulation of tracking devices (sadly none of them play nicely with the current version of OSCAR) to see if puzzle it out myself.  The pulmonologist's first assumption was that my devices were faulty.  But even if they are faulty in the exact numbers they are reporting, that wouldn't  explain the stabby pain / feeling unable to breath / sitting on chest feeling that I get when I destat.  

The COPD references SarcasticDave94 by are intriguing- he is correct in that I am intentionally breathing very shallow to avoid pain.  Other than trying me on a COPD medicine (Trelegy) for the pain my Pulmonologist hasn't mentioned it to me at all.  I followed COPD through on the wiki links but no pointer threads on where to go from there, any suggestions for where to start?
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#17
RE: Intro / O2 Drops after PE; puzzling through Oscar/SP02 data
My COPD was discovered by constant complaints from breathing difficulty and shortness of breath. The PCP suggested I have pulmonary doc order the PFT and diagnostic x-rays of the lungs, not with dye as I recall. Mine was diagnosed pretty early. I take 2 maintenance inhalers of AirDuo and Atrovent with a rescue called Ventolin. The complicated part for me is when Complex Apnea gets mixed in as well. Classify as info only.
Dave

OSCAR
Standard OSCAR Chart Order
Mask Primer
Dealing With A DME
Soft Cervical Collar Wiki
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#18
RE: Intro / O2 Drops after PE; puzzling through Oscar/SP02 data
RE Humidity... I have previously tried manually setting the humidity/hose temp and it runs dry < 8h waking me with an awful smell.   I am not sure what it is with the Resmed machines but they seem to love draining the humidity chambers in my house and not using their filters.   My previous dreamstation CPAP dirtied its fine filters grey (despite the HEPA filter in the bedroom) every two weeks like clockwork, but could go an 12h+ and not run out of water in the humidifier.   My S9 and now this BiPap.. I change the filters every two weeks because well I am supposed to but I honestly can't tell they are dirty in the least bit but struggled with running out of water continually in the humidifier.  If I am not feeling well or intend to sleep for more than 8 hours I have to refill it (on manual or automatic).
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#19
RE: Intro / O2 Drops after PE; puzzling through Oscar/SP02 data
O2 alarms went off more times than I could remember last night Sad 

If I didn't know better, I would think gremlins were sneaking in around 5:30 - 6:30am every morning and tweaking with my O2 concentrator.. sigh. 

I believe my leaks bad last night primarily due to me futzing with the mask a lot... overall very high pain night, woken frequently by the O2 alarms, reach for the pulse oximeter to verify/readjust mask to get it stop blowing air in my eyes etc.  

I thought the nasal mask was better for me, but I seem to be struggling with terrible leak rates with it. I may try going back to the F20 with the new settings since I was having fewer leak issues with it. Thinking-about


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#20
RE: Intro / O2 Drops after PE; puzzling through Oscar/SP02 data
Went back to the F20 mask.. I could post more charts.. but mostly they looks the same with less leaks. AHI is back up above 5 and struggling with O2 crashes consistently throughout the night, which is consistent with pain struggles. The alarm went off so many times last night I guess I got tired of it and just took off the finger reader because I woke up this morning without it on.

Dr Quacky (sleep doctor) referred me to someone who is both out of network (John Hopkins - looooong drive) and not seeing patients during COVID, but I do have an appointment with pulmonologist and hematologist (managing blood thinners post PE) the following week. Any other thoughts / topics you guys think I should bring up with him - e.g. there was mention of inspiration time that I made of already. Bringing the laptop with OSCAR & my SPo2/SleepCloud data.. though he seemed to like the report print out better last time.

Out of curiosity -- can doctors actually write prescriptions for the actual Spo2 adapters on bipap/cpap machines that might be covered by insurance? I couldn't find a supplier on the list that carries it, but googling "ResMed AirSense & AirCurve Complete Oximetry Kit" comes up with an xpod rather pricey solution that seems to integrate directly into the machine?

I have seen both sleep specialists who are in-network within an hour drive from my home/work - Dr. Quacky is closer but neither is particularly good. I've not poked around the forums terribly much - but wonder if leveraging telemedicine with a farther afield HMO sleep doctor might help in my case? I am pretty sure the plumonologist would write me a referral to any .... more competent.. sleep doctor I could find than Dr Quacky.
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