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Looking for some help - almost 5 years and not feeling a lot better
#21
RE: Looking for some help - almost 5 years and not feeling a lot better
IMHO build the case for a BiLevel, the low AHI, High FL in the charts, and all your symptoms (thus the list), honestly and accurately, and ask fro the BiLeve, do tell him that you no the numbers do not justify it, that you have to look at the details, your distorted breathing, and your symptoms to do so.. The AutoSet is a fallback.
Fred Bonjour - Project Manager and Lead Tester for OSCAR - Open Source CPAP Analysis Reporter 
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#22
RE: Looking for some help - almost 5 years and not feeling a lot better
Maybe build a medical necessity case for the BPAP under patient symptoms and complaints were not satisfied with a CPAP, CPAP is too uncomfortable, etc. Complain your lil heart out and make docs ears bleed from it.
Dave

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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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#23
RE: Looking for some help - almost 5 years and not feeling a lot better
(10-10-2020, 10:41 PM)bonjour Wrote: Not bad in finding areas with issues.
These Flow Limits are best managed with Pressure support.  On a ResMed this is EPR.

And we need a solution to the Mouth Breathing, though as long as pressure is maintained expiratory mouth breathing is not that bad, especially with your leak rate.

PS on a BiLevel is much more incremental (0.2 cmw)  and can go considerably higher than the 3 cmw that EPR is limited too.

See my notes on the charts

Thanks for replying in detail.  Have a question on your comments in (your) attached figure 1.  Your comment: (I'm paraphrasing here) Most of this is expiratory mouth breathing, here it is determined by volume.  The volume of the inhale is greater than the exhale.  This is a closed system, where did it go?  What do you mean?  I understand the shape matches the expiratory mouth breathing in the wiki.

Technically, this isn't a closed system, there are vents in the mask, and I'm sure the mask leaks.  I know this because I have dry eye (and am being treated for it) from these leaks.  My eye doctor says my eye lids don't close all the way.  Maybe the leaks are nudging them open?  I also know there are leaks because often I get inflated bags under my eyes.  Both conditions would be greatly mitigated if there wasn't some source of air leaking from the nose piece.  Usually these leaks are not present when awake.  Sometimes I am awakened by them (slightly) and I change my position and the leak is lowered or eliminated.
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#24
RE: Looking for some help - almost 5 years and not feeling a lot better
(10-11-2020, 12:16 PM)bonjour Wrote: IMHO build the case for a BiLevel, the low AHI, High FL in the charts, and all your symptoms (thus the list), honestly and accurately, and ask fro the BiLeve, do tell him that you no the numbers do not justify it, that you have to look at the details, your distorted breathing, and your symptoms to do so..  The AutoSet is a fallback.
Thanks Fred.  Good advise.  Understood (autoset) as a fallback.  For the record, can you state the full name of the AutoSet, so that I can at least guarantee that?  

By high FL in the charts, specifically what do you mean?  FL flags, or more the distorted flow waveforms?  Due to COVID, most of this communication with my PCP will be written via his secure messaging system.  Funny, just had a physical.  (Delayed 3 times this year due to COVID!)  I didn't complain about sleep, which was a mistake, maybe because I've somewhat gotten used to feeling lousy.  So the topic didn't bubble up to the top.  It was clear that both of us wanted to get out of the exam room as quickly as possible.  I got my 3 shots and ran! (Flu, pneumonia, tetanus, diptheria and whooping cough)

Been working on the symptoms list.  To be honest, I have to look up some of the terms, they are not in my normal lexicon. Smile  I have about a 1/2 page of stuff that I have written so far, but it could sure use a clean up.

Is there a downside to asking for a bilevel and self funding?  Does this force me off grid (insurance wise) for the rest of time?  The supplier list on this site, these are recognized DME's by insurance companies?  Would it be possible to get two prescriptions, one that I self fund?  (Guess that's a question for my PCP, it would be nice to have a spare...)
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#25
RE: Looking for some help - almost 5 years and not feeling a lot better
(10-11-2020, 12:27 PM)SarcasticDave94 Wrote: Maybe build a medical necessity case for the BPAP under patient symptoms and complaints were not satisfied with a CPAP, CPAP is too uncomfortable, etc. Complain your lil heart out and make docs ears bleed from it.
Although I fully understand the squeaky wheel gets the grease, not by nature a complainer.  

That being said, need to make a case for bilevel.  Definitely not satisfied with CPAP, nor APAP.  I had a brick for 5 years, then the APAP for 5 years.  So really it's been 10 years.  Not satisfied with the quality of life it has provided.  Needs to be lot better.

Here's 5 years of overview.  I forced the scale on the CA,OA,H, RERA and FL to be 0-3.  From my experience, FL's don't necessarily correspond to AHI events.  Over time the min pressure was raised.  It somewhat controls H and RERA.  FL's are reported only in APAP mode.  When 0 that's because it was in CPAP mode.

Thanks for being sympathetic, it helps.
   
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#26
RE: Looking for some help - almost 5 years and not feeling a lot better
Flow rate measures airflow to and from your body, and yes it could be leaks but your leaks are not that big. That chart is showing up to 50-70% reduction in expiration. seeing that you have a FFM it has to be leaks (sorry, I missed that detail) but that chart should show the same amount exhaling as on inhaling. I have never been able to correlate it to measured leaks. By FL in the charts I am referring to Flow Limits that are not flagged. Anyway you slice it this is not a normal waveform. The goal is to build your case.

I should mention this, and you know it. Your Numbers are awesome, The only the numbers merit is staying on an APAP. The key is how you feel. And you make a good point, so use it, you feel so bad for so long that you feel it is your normal, and I just realized that was what I was doing. thus my list of issues with all this. Bottomline is if you are feeling good we are barking up the wrong tree.

Keep your PR as a spare. what you are looking for in a spare is a fairly short period of use while your primary machine is in the shop or in the process of being replaced.

The downside with self funding a VAuto is purely financial.

ResMed AirSense 10 AutoSet (keyword is AutoSet) or ResMed AirCurve 10 VAuto.
Do note that a generic prescription for a CPAP will get you a APAP because BOTH have the same billing code. DME, being a for-profit organization, may try to sell you the cheapest CPAP they came so they can make more profit. As long as your choice, the AutoSet is in the same class, and it is, it is your choice. You have to 'threaten' to use another DME, but it is your choice. Also note that some DME's are exclusively with one vendor (usually PR) as that gives them a smaller cost, and since they get paid a fixed amount from your insurance it is in THEIR benefit to deliver a lower cost machine. I had no choice but to us a 13 month rent to own. That guarantees that I need to use 2 years of deductible. Also note your out of pocket costs when purchasing thru a DME. You will find the amount likely to be about what you would pay for a self-funded purchase. And the amount billed (not paid) to your insurance to be totally outrageous.

If you self purchase you can still use your DME for CPAP supplies, including those specific to the VAuto you self-financed.

Please get a copy of your current prescription and full copies of your previous sleep studies for your personal records in addition to your new prescription. The prescriptions legally needed to purchase either a CPAP or a Mask as they are considered to be Type 2 Medical devices.
Fred Bonjour - Project Manager and Lead Tester for OSCAR - Open Source CPAP Analysis Reporter 
OSCAR

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New to Apnea? Helpful tips to ensure success
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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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#27
RE: Looking for some help - almost 5 years and not feeling a lot better
Thank you Fred for your thoughtful answers.  Yes, by the numbers I'm great, but that's not how I feel.  At the moment I feel like I've been run over by a truck.  Been moping about, rather than being productive.  It feels like the wind has been let out of my sails.

I have found my original sleep study and have a copy.  Need to get a copy of my second one from my PCP as well as a copy of the current APAP prescription.  I'll put in a request for them tomorrow.  I have to write up my symptoms and how I feel in a better form before submitting them to the Doctor.

As for most DME's, can't say I have a high regard for them or the insurance companies.  It seems the insurance company is not interested in me buying supplies for less (than they are allegedly paying to the DME) from Amazon.  I offered to do so and said it would save them money.  ($14/mask cushion)  They weren't interested!  They said I HAD to buy from an approved DME.  I suspect there's financial shenanigans going between the DME's and the insurance companies - like kickbacks.  What they are paying the DME's is over market rate.  Or maybe there's a more benign explanation like fear of legal action.  All I know is my co-pays are increasing AND the premiums are going up as well.  This year I now have the privilege of co-paying 20% for my over inflated CPAP supplies from the DME.  The healthcare industry could well use a lot more transparency and a lot more competition.  Well, time to end that rant, I'm sure it's been stated more eloquently by many others.

I have an email into Supplier#2, we'll see what my current options are for a used machine.
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#28
RE: Looking for some help - almost 5 years and not feeling a lot better
I understand how you feel on the not being a complainer. I normally am not either. But after many months of nights with very poor sleep, I reached down and became a big bad but effective complainer when I needed to. If you need the boost, just sleep very poorly and skip the coffee. Then drag yourself in to see Dr. Dolittle McDuck and you'll be firing off the poor sleep symptoms like a pro. If it helps, write it all down in whatever format you want to convey "I don't get well rested sleep! Here's my problems, fix it now!". Best wishes on the success.
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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#29
RE: Looking for some help - almost 5 years and not feeling a lot better
Been working at this a bit.  Requested copy of my prescription and a copy of my last sleep study.  In an odd and outrageous (in my opinion) turn of events, it seems these items no longer exist at my PCP's office.  You see, after being taken over by a larger company, they converted to digital records management.  It appears my records are no longer available, including all of my medical records that I physically transported to my PCP when my old doctor retired.  Everything older than 3 years has vanished.  (All of my old doctors records are gone.  At least 7 years of my current PCP's records are gone.)  Feel violated.  

I was so incensed that I contacted my state senator about this yesterday.  My senator is investigating and consulting with the state medical board.  My senator says under state law I have ownership rights to the information in their medical records.  She also said there may be no legal mechanism to enforce this as HIPAA gives all the power to the provider.  This erasing my history feels so wrong, unethical, and seems to be the very antithesis of good medical practice.  

Eventually, I'll have to terminate my relationship with this physician.  Destroying my records, without even offering me the chance to take possession, for me, is inexcusable.  For the moment, I need him to write a prescription.  It's obvious to me he has no idea about settings for bilevel.  Supplier #2 said it would be helpful for the IPAP and EPAP settings to be on the prescription.  Of course, I have no idea what a good set of starting numbers should be.  

Took an hour to get to sleep last night, it normally takes 10 minutes.  Mind was racing - thinking unkind thoughts.  This morning, I woke up with a massive headache.  For me, this is a direct result of bad sleep.  AHI=2.2 which is better than the last 5 days.  Last night, I tried bumping my minimum pressure up to 10cm.  My UF2 (50% reduction for 9 seconds or longer) was up a lot to 3.43.  Usually it's below 1.5.  Got to take an aspirin or something for this headache.

Trying to soldier on...
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#30
RE: Looking for some help - almost 5 years and not feeling a lot better
In post #9 of this thread I interpreted your present pressure settings in form of bilevel settings. http://www.apneaboard.com/forums/Thread-...#pid369732
Quote:When you set the Airsense 10 Autoset at a range of 9.4 to 16.0 with EPR, your actual pressure delivery will be 9.4/6.4 to 16.0/13.0 (IPAP/EPAP)

If you are requesting a prescription for an Aircurve 10 Vauto, I recommend that the pressure prescription be set at:
Mode: Vauto
EPAP min 6.4
PS 4.0
Max Pressure 16.0

This will provide a bilevel pressure range from 10.4/6.4 to 16.0/12.0 (IPAP/EPAP)
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

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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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