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How important is having a CPAP professional ? Is it impossible to learn CPAP without
#11
RE: How important is having a CPAP professional ? Is it impossible to learn CPAP without
(10-17-2018, 10:44 AM)SarcasticDave94 Wrote: A doctor is required/needed to order a sleep study (PSG).
True, but there are many on-line services where you can buy a home sleep study which will be "prescribed" by doctor working for (rubberstamping for) the on-line company - completing a simple questionnaire may be required, though.
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#12
RE: How important is having a CPAP professional ? Is it impossible to learn CPAP without
(10-15-2018, 02:12 PM)AliceF Wrote: I am very curious as to how important having a health professional involved in CPAP therapy is.  

I have been online reading horrid stories of folks going without one.  But the best I figure it, that health professional is only guessing the exact CPAP machine numbers a person needs, just like anyone will do going it alone.  The results tell you if you are doing it right or wrong, which is what the professional will lean on as well.  

Hi, Alice.  I want to make two main points.  First, you really should replace the old machine, not just because it's obsolete, but also, as Sleeprider said, because it'll fail some time.  You don't want it to fail when you have no backup machine to use, and it'd be a bad situation to have to rush around (either physically or virtually) and buy a replacement machine in a big hurry because otherwise you'll be miserable from untreated sleep apnea in a day or two so you need it right now.  Another reason to replace it is that most likely you can get much better therapy from a new machine with its vastly improved algorithms and fine-tuning features.

The second point is that what you call "guessing" is, if it's done properly, not merely guessing, not random at all, but an implementation of the scientific method, which I won't babble about except to say that it can solve all sorts of problems including figuring out the appropriate CPAP pressure or range of pressures (titration), and other settings, for a sleep-apnea patient.  However, one question that rarely gets asked outside of strange and fascinating places like Apnea Board is:  What about having the patient do that herself, preferably with the help of experienced and knowledgeable folks who can provide diagnoses and treatment plans?  It turns out that it is feasible to do that here, because there are experts (I'm not an expert, BTW) who will be glad to help you.

The main requirement is to buy, as soon as feasible, a modern APAP machine that will provide full data on an SD card.  The best ones to get include (at the top of the list) the Resmed Airsense 10 Autoset and (if you prefer to stay with Respironics) the Philips Respironics Dreamstation.  There are other machines that will work pretty well and will do APAP and will provide full data, but those two are the ones to look at most seriously, because why settle for less than the best, as long as the best isn't unreasonably expensive?  Trying to cut corners there to save a couple hundred dollars, or whatever, is false economy, when you consider that it's your health that you're investing the money in.

An Airsense 10 Autoset can be bought new, in box, for $650 including shipping from a seller who advertises on Craigslist.  I posted about that earlier today in another thread, and you can search for that or else ask and I'll post the spiel again.  I think the same seller has Dreamstations, but I can't remember and I'm too lazy to look at the moment.  The reason I mention it is that no prescription is demanded in that case.  I don't know offhand of any other non-Rx source for one of the best machines, but (moving down the list to a lower tier) if you want just any old machine, new, you could buy an Apex model "iCH II Auto" (weird name) from a seller on Amazon for $500.  I don't recommend it, even though it does APAP and provides full data on an SD card, because the data can't be used by the Sleepyhead software, only by a proprietary closed-source PC program (available here on AB) from Apex: better than nothing, but not all that good.  Also, the Apex firmware's algorithms aren't nearly as good as those of the two top contenders, so really it's not worth that price, IMO, except to someone who does need any CPAP/APAP machine right now for immediate relief of symptoms.

So, speaking practically, that's why a prescription for CPAP/APAP is needed (or, in more serious cases, a prescription for bilevel CPAP or maybe ASV).  And to get that official piece of paper (which you can also then scan and use online to buy from the suppliers in the list of known-good retailers here on AB), you first need to have a sleep study done by a sleepydoc.  No sleep study, no Rx.  Catch-22.

That's how it works at the moment, as far as I know.  Stom mentioned online CPAP-Rx mills, which I know nothing about except that Supplier #30 in the list here has a prescription-renewal deal, $100 I think, that requires evidence of a previous sleep study from past years or else buying one of their "home sleep tests".  So that would be something to look at.

Speaking of Craigslist, you can also look for used machines there, and grab one if it happens to show up while you're looking and if it happens to be a good, useful model (APAP and full data via SD card) and if it happens to have a reasonably low number of total run hours, which you usually won't know until you go to the seller's location to check it out and get that information from the machine's display.  That's a lot of ifs, in addition to the usual buying-used questions of whether the price is reasonable and the seller is OK.  You can spend a lot of time going through all that, and maybe in some number of months end up with a good, low-hours machine, Sleepyhead-compatible, at a reasonable price ... if you're lucky.

Anyway, sorry to run off at the fingers, but HTH and all that. Good luck, and the main things are that yes, you can do it on your own, but first you need to plan on getting the help of the experts here and that means using Sleepyhead if possible, and second you might be seriously handicapped when shopping for the hardware if you don't have the Rx.
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#13
But wait, there's more! Fun for the whole family! Great gift idea!
I have to add another interminable p.s. (you're welcome!) to that lecture about sleep studies and sleepydocs, because I forgot to point out something that's quite obvious to a lot of us here but is sort of unmentionable in polite company because it's rude, crude, and socially unacceptable:  A lot of sleepydocs are, to put it very politely (that might be a first for me), not all that useful to us patients except for writing prescriptions for machines & masks & supplies and fulfilling their pro-forma roles in the current silly entrenched $$$$$$ system of insurance, medical "providers", and DMEs.  So we depend on the docs to go through the motions and then write the prescriptions, and we take the prescriptions and use 'em to get some of the resources we need to treat our sleep apnea, at home, by ourselves, with the help of other information resources from patients & experts on AB and maybe other places.

Take my case, for instance, which I'm sure is entirely typical.  The medical side of my case is perfectly ordinary and average.  My former sleepydoc (I have since silently fired him) I have seen exactly once, at the initial office visit, during which he glanced at the answers to the usual questions that had been recorded in my chart on the computer, told his nurse to schedule a sleep study, said goodbye, and left the room.  I went through the sleep study, which was administered by one tech (barely competent, and surprisingly ignorant of CPAP stuff in some ways) among two or three on duty that night, waited several weeks while the techs & nurses & docs ignored or mis-interpreted my data, went back for a second sleep study including titration (administered by one different tech), got the printed Rx on my way out of the clinic that morning, and have never been back to that clinic since, nor will I ever visit it again.  I wasn't offered copies of the sleep studies, and when I sent a letter requesting copies, my letter was ignored (in violation of federal and state rights-of-patients laws).  I haven't bothered to follow up on that, because I have the Rx and my case is average and I can get & tune & use the hardware on my own, so now I have treated sleep apnea with AHIs generally way under 5, and I don't give a flying fart about anything else.  After that, I called the receptionist to cancel my follow-up appointment at the sleep clinic, fired the incompetent & endlessly annoying DME that had been inflicted on me, and considered myself lucky to be permanently out of that entire stupid damned annoying obnoxious blood-pressure-increasing mess of nothing but time-wasting crap from a bunch of incompetent idiots.

So, to answer your question again, that is why we need sleepydocs and their various hangers-on ... like we need a hole in the head.
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#14
RE: How important is having a CPAP professional ? Is it impossible to learn CPAP without
Well, I certainly hope that you do not have to have a professional sleep consultant or coach. Being a disabled veteran, and well over the age of 65 for medicare.
I asked my temporary veterans choice primary nurse practitioner for a sleep study.
Long wait then sleep doctor saw me, then a nurse practitioner made the rx for the machine. No recheck or followup. The local veterans office issued a Resmed airsense 10 (nice machine) and had a Skype conference call with a sleep tech in Portland. Basically just gave me the bag and said good luck, we will phone you up in about 3 months and see how you are doing.
If you need help call the VA help line. Message said they will return the call in 5-7 business days. No help on mask or settings, so........
I really do appreciate the effort and help they have given me but are stretched so thin there is no real help.
I am on my own to research and make changes.
Thankfully I found this board and a few others with very generous and helpful mentors.
Install and format Sleepyhead and ask for feedback and get very helpful and scientific answers based on the actual readings. Done in a much faster and multi advisory fashion.
Very patent and understanding answers to even very basic answers.
So in short (finally) the members of these forums are every bit as professional and helpful as any one I have come in contact with.
As an aside, several friends and family members have been cpap users. They all have stopped, even though their medical conditions remain and are now getting worse.
Only one has improved, and he had gastric bypass.
Thank you all for your help. Many many hours studying and searching these threads.
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#15
RE: How important is having a CPAP professional ? Is it impossible to learn CPAP without
(10-19-2018, 01:12 PM)Stom Wrote:
(10-17-2018, 10:44 AM)SarcasticDave94 Wrote: A doctor is required/needed to order a sleep study (PSG).
True, but there are many on-line services where you can buy a home sleep study which will be "prescribed" by doctor working for (rubberstamping for) the on-line company - completing a simple questionnaire may be required, though.

also true, many times I forget about the home study option, so thanks for reminder (seriously)
Dave

I'm not a doctor in real or fictional life. My posts include opinions based upon user experience regarding CPAP therapy and should not be considered medically professional direction or advice. Even a 1,000 mile trip requires a good first step. My recommended first steps include getting good walking shoes, 1 great cup of coffee, and a good GPS.

Wiki Info for Beginners
Sleepyhead Chart Organization
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#16
RE: How important is having a CPAP professional ? Is it impossible to learn CPAP without
First...it's been a LONG time since I've posted.  After my diagnosis 4 and a half years ago, I frequented this board often and learned more than I've learned anywhere else.  Much appreciation to all for the education...

I've recently had sinus surgery, septoplasty, and turbinate reduction, so I feel like I'm having to re-adjust and learn all over again.  After my initial diagnosis years ago, I took to the therapy very quickly and become a poster boy for success.  AHI's stayed well below 1 for 4+ years.  But then after the surgery, everything changed.  I'm currently fine tuning my settings to get to the levels I was at pre-surgery.  I'm getting there, but it's taking time.  

Now, about the question at hand...

Knowledge is a powerful thing.  Even after 4+ years of successful CPAP therapy, I'm still learning.  I read a LOT.  I research a LOT.  Everything I take in has a purpose in helping me understand the why's and how's of what I'm doing with my machine and how it affects me and my sleep.  

I'm much like Fats Drywaller...I went to the sleep doc for the initial study.  I never saw him again until my one year checkup.  That visit lasted 2 or 3 minutes at most...all he did was ask how I felt and looked at my numbers.  Heck...I can do that.  After that first year follow up, I canceled all other appointments and have never gone back.   I feel like I know more about my situation and my therapy than the doc does.  And honestly...if you arm yourself with knowledge after research (which most definitely includes this forum), then it is quite possible that I may indeed understand my situation and my therapy better than anyone else.  No need to take time off work and pay for a doctor visit when I can take care of things myself. 

Also, I do have a very good and reliable DME rep.  She's a lifelong friend to boot.  I've learned so much about my machine, the masks, and therapy in general, she says that I'm the most knowledgeable of her patients, and she routinely tells people to call me with questions that she knows I can answer (mostly equipment type stuff).   So I don't have a DME rep that is out to "get me".  She genuinely cares.  She'll call me up anytime she gets a new mask that she things I'll like and I'll give it a try.  

So...is it important to have a CPAP professional?  IMHO...I AM the CPAP Professional.  

Just do your due diligence and educate yourself.   There is no such thing as too much knowledge.
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#17
RE: How important is having a CPAP professional ? Is it impossible to learn CPAP without
From my limited experience, but also drawing on my more extensive experience as a patient of many other medical specialists over the last ten years, I see three general problems with our current situation regarding sleep doctors:

Too much of a cookie-cutter approach.  The docs who are not all that conscientious or educated tend to assume that one size fits all and that everything will be routine.  In my case that was true, and I might even be in the majority of sleep-apnea patients in that regard.  However, that leaves a lot of patients who are not cared for properly and whose cases might even be botched by incorrect diagnoses (e.g., prescribing CPAP for OSA when ASV is actually needed for CA).

Unjustified arrogance and condescension.  As a patient, I've seen this endlessly in various medical specialties, and it goes along with the first problem: the docs assume that everything will be routine, so they come in to the examining rooms with the attitude "I'm God Junior, I know everything, and you patients are all obnoxious little twits who want to waste my time with stupid questions."  I could rant about it for a few paragraphs, but I think we're all familiar with the phenomenon.  It must be especially galling to patients who are paying a lot of money for their treatment ... and I mean "treatment" in more than one sense.  It's inexcusable.  Also, that ignorant attitude inevitably trickles down, or sideways, to the nurses & sleep-techs at the clinics and to the RTs at the DMEs.  Ugh.  Grow up, people.

Lack of cross-discipline education, communication, and referrals.  As jaw2004 said, sleep apnea affects everything in the body and its repercussions are endless.  But it seems that most docs, including the sleepydocs, either don't know that or for whatever reasons don't act appropriately by providing diagnoses, referrals, and especially tests that would uncover those connections.  I wrote elsewhere about an idiot of a urologist who failed to take my untreated sleep apnea into account even though it was recorded in my chart on her computer (she's too busy and too high & mighty to read it!) and who went off in two or three unjustified directions, prescribing drugs reflexively (as if she were being paid per prescription) and once again assuming that the case must be right in the middle of the bell curve, so no actual thought is needed; just react to some stimuli, say goodbye, and go on to the next patient.  As it turned out, most of my (minor) urological symptoms were caused only by sleep apnea and they disappeared as soon as the CPAP therapy took effect.  That's just one little example, and the same kind of thing must happen every day in zillions of clinics everywhere.

Some radical changes are needed, no doubt about it. But, failing that (and it has failed and will continue to fail), be your own advocate and educate yourself and use whatever non-Establishment resources you can find, including AB.
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#18
RE: How important is having a CPAP professional ? Is it impossible to learn CPAP without
There's an interesting snoozepaper story that is not CPAP-related but has to do with the obliviousness of doctors in general and how rare it is to find one who is competent & conscientious and who can accurately diagnose an obscure condition.  I won't post a .com link for the mods to delete, but you can find the story in the Wapo from about three months ago by doing a search for:

intitle:"crunching noise in her head"
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