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[Treatment] Noob; wondering about equipment, info dump below
#11
RE: Noob; wondering about equipment, info dump below
(03-24-2020, 11:24 AM)bonjour Wrote: For the PSG, best to copy, remove personal info, and post the resulting image.

Yeah, I have no physical results from it, nothing to take an image of or scan...
The results are all in the EPIC "MyChart" system (which I can access via browser), and it provides the results in a super janky format. Every line is prefixed with "Transcript[tab]" and then text that is hard-wrapped at ~80 columns. There are no graphs / images, just poorly formatted text.

I pasted my actual PAP levels / data a few posts up using [code] tags to keep it as formatted as it was originally provided.
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#12
RE: Noob; wondering about equipment, info dump below
Request a hard copy from you prescribing physician. If they tell you it's available electronically, tell them you are unable to produce a printable copy and you want one.
Crimson Nape
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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: Noob; wondering about equipment, info dump below
(03-24-2020, 11:26 AM)ZPrime Wrote: One of the things mentioned in the info for the HSAT is that it can underestimate obstructive apneas. Would this mean they are then interpreted as central instead, possibly causing my centrals to read higher than they actually were?

There was also this line from the lab PSG: "Some respiratory events that were scored as central events in this in-lab PAP titration appear to be related to obstruction in nature when looking at the respiratory flow shape." Is this just the interpreting MD not wanting to believe I'm having that many centrals even on PAP support?
The premise in the HSAT is that you were sleeping the entire time. you stated that you took a bathroom break.  When we move at night we hold our breath, this is frequently misinterpreted as central apnea, during manual interpretation we dismiss this as SWJ or Sleep Wake Junk.   This would not change my overall read of your results.

There are breath forms that demonstrate aspects of both obstructive and central apnea.  Obstructions are often present through most of the night, Flow Limits are the lowest form of this, with frequent centrals you have to see some that exhibit the characteristics of both, this is 'mixed-apnea".  This is likely what is being observed.
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#14
RE: Noob; wondering about equipment, info dump below
I have the ASV from ResMed after going the long and painful journey from one bad choice of machine to another. I had to travel from CPAP to DreamStation BPAP. The BPAP was dangerously the wrong machine; it added more CA events due to it's nature of interacting with my pre-existing CA.

I went to complaints 101 to shape my discussion of, and complaint about, extremely poor treatment on the BPAP. I took the initiative, and with hard copy of the PSG sleep study, I showed the nurse the numbers at my pulmonary care office. I mentioned the high CA numbers, and asked if that indicated an ASV. It did, she agreed I must have one, and only then did I get one.
Dave

OSCAR
Standard OSCAR Chart Order
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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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#15
RE: Noob; wondering about equipment, info dump below
ZPrime

I have formatted your data and included a screenshot in your post above: http://www.apneaboard.com/forums/Thread-...#pid341700

It's just a matter of dumping your numbers into a spreadsheet and using text-to-columns.

Following up the discussion, there seems to be a deep reluctance on the part of doctors (and insurance companies) to get patients onto an ASV. Some of this is due to old-school conservatism and some of it is a fear factor because of the study I mentioned earlier. ASV machines are expensive so insurance companies would prefer to spend tens of thousands on extra tests to save themselves a couple of thousand on the machine - makes no sense.

A lot of doctors get defensive about their judgement being questioned, especially when the patient says "I read it on the internet". You'll need to use your emotional intelligence to "read" the doc and work out how best to put the questions to him/her. Maybe the place to start is "I don't understand why there was so much central apnea in the first study but it wasn't diagnosed as such". Followed by "The results of the titration seem to indicate that the central apnea is not properly treated by the bilevel machine. Do you think we should try ASV?"
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#16
RE: Noob; wondering about equipment, info dump below
(03-24-2020, 07:54 PM)DeepBreathing Wrote: It's just a matter of dumping your numbers into a spreadsheet and using text-to-columns.
As someone who has spent over 20 years in IT... I probably should've known that. In my defense, I barely ever use Excel. Wink

Quote:A lot of doctors get defensive about their judgement being questioned, especially when the patient says "I read it on the internet". You'll need to use your emotional intelligence to "read" the doc and work out how best to put the questions to him/her. Maybe the place to start is "I don't understand why there was so much central apnea in the first study but it wasn't diagnosed as such".  Followed by "The results of the titration seem to indicate that the central apnea is not properly treated by the bilevel machine. Do you think we should try ASV?"

I have another friend (not on these boards) who is also a hose-head, and his wife is an MD... he basically gave me the exact same advice. Smile

It's all somewhat moot at this point, as I can't even get the Cleveland Clinic to give me an appointment for a sleep MD referral/consult. The sleep department is "in a holding pattern for 2-3 weeks for new patients" at this point. (I started all this process through my GP, he and his NP ordered the HSAT and the titration, but I've never been a patient of an actual sleep doctor yet.)

So I get to twiddle my thumbs while COVID-19 runs its course. I've been living with garbage sleep for about 2 decades so hopefully a few more weeks won't be the end of me. :p
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#17
RE: Noob; wondering about equipment, info dump below
So I'm raising this thread from 3 months dead to finally say, "hurrah," I now have a machine and a mask.

Unfortunately, it's a Philips (boo) Auto BiPap (boooooo).
Cleveland Clinic finally gave me a consult with an actual sleep MD, but it was virtual / Zoom meeting. Why they couldn't provide a virtual appointment back in April or March Dont-know but how frustrating to have to wait months just for this.

The sleep MD claimed she was going to read through both of my tests and re-interpret and then either move ahead with the original recommendation, or schedule yet another lab PSG test if she felt an ASV was appropriate. She flat out said that she could not prescribe an ASV without first seeing lab results showing it was correct. After having to pester the MD after a weekend (appointment was Thursday, she was supposed to look at my data on Friday and apparently didn't or at least never replied as she said she would), she finally got back to me on Monday or Tuesday... without making any changes and just following what the previous interpretation had said. Oh-jeez

So I was prescribed a BiPap, with fixed pressures (21i/17e), and even though I asked for a ResMed unit, apparently they had none in stock at the time so I wound up with a Philips.

I used it for the first time last night and only got about 5 hours on the unit. Woke up with my mouth a complete desert around 5:30AM, and my wife woke up around the same time, so I shut down the unit out of courtesy to her. She was apparently having nearly as hard of a time trying to sleep with the stupid thing blowing away next to me as I was. It sounds like a damn vacuum cleaner with the regular high and low pressure changes. I had a really hard time falling asleep, even though I was pretty tired when I hooked up around midnight. The ramp function (starting at 4cm and ramping to my set of 21/17 over 30 minutes) didn't even help much. I can adjust the ramp time to 45min but that's the max.

I'm completely at a loss as to why they wouldn't prescribe me for "Auto" as well - the machine is capable of "auto" but it is hard-set for 21/17. (I know how to get in there and change it, but it also has a cellular modem and I assume that will get monitored by insurance and I might get yelled at for playing in the settings...)

My first night showed an AHI (retrieved with DreamMapper) of 2.6, with 7 "clear airway apneas", 1 obstructive, and 5 hypopneas (over 5h 8m of activity). I then went back to sleep for another ~3-4 hours without the machine.

Irony - the device was delivered to me along with a mask by a technician from the DME provider. When I was discussing my situation with her, I mentioned that I had a lot of central apneas during the home test, and that "internet people" suggested a BiPap wasn't the correct device. She then finished my thought and said "yeah, that usually requires an ASV!"  Too-funny  Sad

So now I have something, it's difficult for me to use and dries out my mouth... but I do feel like it helped. At least, I feel less crappy today than I usually do, and I haven't been feeling the need to fall asleep in my recliner while watching TV. Gonna try to stick to it and I hope that over time the data will give me more ammo to take to the sleep MD during a follow-up (which I have to schedule in the next ~3 months to keep insurance happy, I guess.)

Is there any way to change the brightness on the stupid Dreamstation? I thought it had a light sensor on it, but when I touch the knob or the ramp button at night, the screen comes on and lights up half my damn room it's so bright. (way brighter than e.g. a modern iPhone would be with the auto brightness enabled there)
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#18
RE: Noob; wondering about equipment, info dump below
In most cases across the US, the DMEs are going to push a Respironics DreamStation. They pay less for the Philips but charge you and the insurance the same as if it were ResMed typically. In some ways, I'd almost be inclined to tell the DME to call you when the ResMed comes in.

Be warned that Ramp is not going to be your friend if you have significant CA. Also, an OSCAR screenshot will be good to add as soon as you have a night's data. Ramp and other pressure swings will not play well with CA. Again with the CA, a regular BPAP may be a disaster. I hope it's not.

That 20.5 minutes of 0 events will be hard to duplicate in real life. CA have a famous attribute of consistent inconsistency. The CA will be there some and gone at other times on any device other than an ASV.

Bottom line is they are going via the make you suffer a lot with lots of tests and lots of machines that you'll fail on then you might get to the only answer ASV. I could be very wrong, but prepare for ugly charts.
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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#19
RE: Noob; wondering about equipment, info dump below
Here's a screenshot of OSCAR data from last night (meant to add it to the previous post but the edit window closed while I was playing around with OSCAR)...
   
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#20
RE: Noob; wondering about equipment, info dump below
Your chart implies that you may, only may, be able to lower your settings. Do you want to try, or stick with your doctor's settings?

Start your ramp at a higher pressure, better don't use it. You lose therapy time while in Ramp. At least work on minimizing the time you use the ramp.
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