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Looking for some help - almost 5 years and not feeling a lot better
#41
RE: Looking for some help - almost 5 years and not feeling a lot better
(10-16-2020, 12:36 PM)SarcasticDave94 Wrote: Sorry if this throws monkey wrenches into the situation, but I seem to be good at doing so at times.
Having experienced my own complex apnea and COPD situation, maybe something other than VAuto might need consideration. ResMed may have something that you may want to discuss here as a different choice to think about.

It is possibly well known about me that Central apnea is a big hindrance to sleep, and so has COPD, especially in the past year. In fact, I take a new sleep study tonight to get medical evidence to move on from the ASV onto an NIV ventilator with AVAPS mode.

I am not saying you need to go that high in the machine chain. In light of your COPD and Asthma, maybe a machine with AVAPS might be worth considering. RedMed has an ST-A in the CPAP family, and up from there is Stellar 100 & 150, then up again to the Astral 100 & 150. I'm only mentioning because I don't want you to need to attempt a redo on the machine if you need to go down AVAPS road and have already chosen and received a VAuto. I am not making medical assessments, but maybe you're not as bad off as me, or some other factors are in play that we aren't aware of. If I were asked, I would suggest you at least consider the ST-A and research it a bit, and let's see what discussions of this possible either/or machine discussion brings to light.

I'll mention my inhalers to put us on a more level playing field. I have Breo Ellipta at 200/25 mcg & Spiriva Respimat 125 mcg as my long lasting daily inhalers. I have a nebulizer that I'm using ipratropium .5 mg. And last is the Ventolin HFA as my rescue inhaler.
Thanks for your insight.  You know, I've never made the connection that COPD/asthma could be affecting my sleep.  Could very well be.  Do know, that despite various settings changes on my Respironics 560, that things aren't good for me.  There's a lot of unaddressed flow issues.  Feeling refreshed at most 3 times a year, is a real problem.  I may indeed need to go further up the machine chain.  At the moment, however, I'd be satisfied with attacking UARS or UARS like respiratory flow issues.  Have to learn to take baby steps...

I probably P*ssed my PCP off when I complained about missing medical records recently.  He might even fire me as a patient.  To be honest, I'm more irritated with the owners rather than the practitioner.  Perhaps my PCP thought I was saying it was him.  Eventually that will work out.  

So at the moment, if I can manage just getting this VAuto, it would be an improvement over the Respironics, which does not address flow adequately for me.  If I have to go 2nd hand, it will not be good to pay out of pocket, but I do need to feel better.  Once I'm feeling a bit spunkier, I can do battle with whomever I need to (PCP, new PCP, insurance, etc).
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#42
RE: Looking for some help - almost 5 years and not feeling a lot better
I hear you on this. Meh if Dr. Dolittle gets feathers ruffled and wants to terminate your patient status. Go ahead doc. I'll give some other doc my small boat payments when I visit their office instead. Then again, I handle things in this way, always stay in charge and if doc isn't meeting your standards, then you fire him. Go elsewhere for treatment then if doc is upset. There sounds like a cause for you to be more upset with doc failing to treat properly. Go ahead and practice "Doc YOU'RE FIRED!". There problem solved.

In all seriousness, consider replacing incompetent or vain docs.

Coffee
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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#43
RE: Looking for some help - almost 5 years and not feeling a lot better
(10-16-2020, 01:24 PM)SarcasticDave94 Wrote: I hear you on this. Meh if Dr. Dolittle gets feathers ruffled and wants to terminate your patient status. Go ahead doc. I'll give some other doc my small boat payments when I visit their office instead. Then again, I handle things in this way, always stay in charge and if doc isn't meeting your standards, then you fire him. Go elsewhere for treatment then if doc is upset. There sounds like a cause for you to be more upset with doc failing to treat properly. Go ahead and practice "Doc YOU'RE FIRED!". There problem solved.

In all seriousness, consider replacing incompetent or vain docs.

Coffee
Going to say that I may have inexpertly inflamed things.  Yeah, I'll blame sleep deprivation on that! Laugh-a-lot Sleep deprivation can reduce executive reasoning, which may have prevented the situation.  Next paragraph states what inexpert comments I mad.

My PCP's practise is now owned by a multi-state corporation.  Their record retention policy seems to be contrary to NH State Medical Board rules, which have the force of law by statute.  My PCP may have inferred that I said "he was unethical to "dump" patient records", when I meant it was "unethical for the owner to do so".  I have the phone number and name of the Board's chief investigator, courtesy of my state senator.  My state senator was quite surprised to hear of my issue.  I'd like to cool down a bit prior to making the call, as I think it would end up being more effective.  My PCP is ok, a little cool, but professional.  He gives the appearance of caring, he doesn't appear vain, so I don't dislike him.  That being said, the practice is not so hot to follow up on things.  I had a cyst that was imaged 11 years ago.  There wasn't a follow up.  I found in my physical medical records a diagnosis signed by my PCP.  Guess what, that record has vanished, undoubtedly due to the new owner.  I had to request a follow up, and attached his signed report.  To my PCP's credit, he has scheduled a test for me.    

Back to all things apnea.  It's probably better to just call Supplier #2 and see if we can work something out.   Going to do just that.  Be right back...
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#44
RE: Looking for some help - almost 5 years and not feeling a lot better
Good luck that it turns out well.
Dave

OSCAR
Standard OSCAR Chart Order
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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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#45
RE: Looking for some help - almost 5 years and not feeling a lot better
Quite an interesting conversation with Supplier #2!  A phone call is the smart thing to do.  If you are on the fence, just call.  One thing to note, the person I spoke with is OSCAR aware, which to me is a huge plus.

Long and short of it is that a bilevel machine is coming my way.  I have to say that the process was relatively painless, certainly less so than typing an epic, pleading with PCP's, dealing with unsympathetic sleep specialists treating to AHI=5, (the sleep report that I don't have yet, not the ones I posted previously) or plodding along slowly to dot every i and cross every t for the insurance companies.  

My wallet is crying, the moths flew out, but at least there can be some forward progress.  I am so psyched Grin  I don't think that everything will get better instantly, but at least there is a path to improvement.  
Thanks for everyone's guidance and support.  It's been really helpful.  Thanks I will consolidate most of the suggestions into my document and save it, as it shows how to write a more effective request for PAP machines.  

I'll let you know when the VAuto arrives, there's bound to be a lot of questions.
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#46
RE: Looking for some help - almost 5 years and not feeling a lot better
Start by getting the manual. Click the CPAP Setup Manual in the black banner. Follow the instructions. It's a manual process so it will not be instant, but it will come.
You want the manual for the ResMed AirCurve 10 VAuto.
Fred Bonjour - Project Manager and Lead Tester for OSCAR - Open Source CPAP Analysis Reporter 
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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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#47
RE: Looking for some help - almost 5 years and not feeling a lot better
(10-16-2020, 04:08 PM)bonjour Wrote: Start by getting the manual.  Click the CPAP Setup Manual in the black banner. Follow the instructions.  It's a manual process so it will not be instant, but it will come.
You want the manual for the ResMed AirCurve 10 VAuto.
Thanks.  I'll do that now. Done!
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#48
RE: Looking for some help - almost 5 years and not feeling a lot better
One other thought, I have an additional insurance along with Medicare and they have a durable equipment portion in my policy.  I filled out the paper work and without thinking I would get any money back, I filled and after about 3 months I received a check for the full amount 799.    I'm not sure how that will work when I need another machine down the line.  The insurance may say I already have one and can't have another one for 5-7 years.  If so then I will buy one at that time but this time they covered it. BTW I got a prescription for the new machine from the DR. and sent it with the receipt.

so if you have an add on policy or an original policy that does cover durable equipment, give it a try - all they can do is deny it and you are not worse off than now.
Apnea (80-100%) 10 seconds, Hypopnea (50-80%) 10 seconds, Flow Limits (0-50%) not timed 
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#49
RE: Looking for some help - almost 5 years and not feeling a lot better
Well there has been a lot of progress since I last checked in This is why keeping discussions on the forum is so important rather than going to PM. In our conversations, I forgot to mention that before I got a prescription for my current Vauto, I purchased a BiPAP Auto out of pocket. It was this experience that justified the change in prescription, not a test or a long pleading discussion or letter. I simply documented the improvement than let the doctor know what worked. Although it cost you a nice chunk of change, I think you will find it is well worthwhile, and you will be able to discuss your experience with the doctor to justify your next bilevel machine. This approach takes initiative, and money out-of-pocket, but gives you the ability to include your doctor and get future prescriptions. Just keep the doc in the loop. Be sure he keeps a record of your therapy and improved results with bilevel. The ONLY reason this is even an issue is that insurance wants to pay for a lower priced machine.
Sleeprider
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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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#50
RE: Looking for some help - almost 5 years and not feeling a lot better
Ok, trying to setup my new to me machine! ResMed AirCurve 10 VAuto. Just got it.

Time and date are set. I have reset machine and card and set to factory default.
I have updated the settings to:

Mode: VAuto
Max IPAP: 16.0
Min EPAP 6.4
PS: 4.0
Ti Max: 2.0
Ti Min: 0.3
Trig: Med
Cycle: Med
Mask: Full Face

I have set the ramp OFF
Humidity OFF

I've now exited the Clinician's menu. Did I get most of it right? What else should I do before tonight?

BTW, my machine has an old CDMA modem. In my case, it doesn't matter. No one has ever looked at over the air data for me.
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