Noobie needs encouragement

[rsp5820]

I've been told for years I am suffering seriously from OSA - terrbile sleep, always tired, etc. Finally unstubborned enough to schedule a sleep study. I think my insurance will pay, but my primary concern is that I get quality care in terms of the sleep study, doctor's interpretation, purchase of a device, and ongoing support from all of these experts whom I am trusting and who are getting a lot of money. The money concerns me because money attracts scammers. My ordering pulmonologist seems ok - he was recommended by my long time primary doctor. But how do I tell? I'm not sure if etiquette allows posting his name here. The sleep study is done at a decent suburban Chicago hospital. Doctors's office says they are not locked to one manufacturer, but will choose "what's best for me" from United Health Care's approved list; they also say the device supplier will come to my house (or maybe I go to their office) to have a mask fitted and get instructions.

I have spent a couple of nights (...I don' sleep much...) chasing around this forum (quality stuff!) and decided that a I might as well grin and bear it and have a formal sleep study. I am ordering CMS50F or MD300W11 recording PO2 today to start my own data capture. I am willing and able to educate myself and manage my own care, but realize that professionals can (and sometimes do) do it better and faster.

I think it silly to spend $4000 (even if insurance pays most) to "find out what I and my pulmonologist already know", but the main thing is that 11 day wait for sleep study, then 10 days for the poor overworked sleep specialist to do his report, then wait till Dec 15 for my busy pulmonologist, then get stuck with holiday slowdown and not get my CPAP until early January.

1 - Would I be better off to buy a CPAP today and start getting benefits while all these experts drag out the calendar? Would I want to get an APAP? Something with recording capability? I realize the mask is highly personal so that may take some experimentation. Or will doing it myself take until January anyway?

2 - How can I tell if my doctor is qualified and will give me good initial and ongoing care? If not, how to find a better doctor?

3 - How can I tell if the sleep lab is up and UP? If not, how to find a better lab? Or is a home sleep study good enough (at least to start with)?

4 - How do I work with my doctor to choose a specific machine?

5 - Once a machine is chosen, where do I buy it to get good initial service and ongoing support if I need it?

And PLEASE - tell me this is all worth the effort to improve my health and quality of life so I have the strength to roll up my sleeves and work the problem! I have been disappointed too many times by surgeons who say "No worries, mate. No side effects, no complications, complete cure, back playing basketball in a week, very little pain ... when reality is generally "Things are a bunch better but far from perfect, and with significant effort and residual problems".

TIA
RIck

[Julie]

Start here - http://maskarrayed.wordpress.com/

and then... Why are you so concerned about your MD's integrity - is he/she new to you? Of course you've probably seen some scarey postings here re a few unscrupulous, money hungry docs and techs and DME's, but the majority are more likely just hard working and honest people. I suppose you can always contact your local AMA office to find out how to 'vet' doctors, or there may be something online about individuals.

What I wouldn't do yet is run out and get a machine in anticipation of needing one, because it's possible you'll get a diagnosis of a variant of 'regular' obstructive apnea, and some of those require particular machines... not all of them do everything for everyone.

And as far as ongoing support goes, apart from your own (or sleep doctor's) doctor's help, this forum (seriously ) is a terrific place to start.

I hope you're not looking at Cpap/Apap etc. as 'cures', because apnea is rarely cured, but is a condition that is treated, as diabetes is, rather than being looked at as temporary. A handful of people who've lost a great amount of weight (100 lbs) usually through surgery have come off 'the hose', but the large majority don't. But don't be put off by all the complaints you see on the forum - don't forget, those of us who have a smooth and easy time with Cpap (lots of us!) don't write in with problems, so do look on things as being a positive step for yourself, and one that doesn't necessarily have to be difficult.

[caedenspa]

Check your inbox...

[bwexler]

The purpose of the sleep study is to determine if you have obstructive sleep apnea or some variant or some other problem entirely.
A large percentage of people who score high on th Epworth sleep test wind up with OSA.
If you choose to gamble, you could get a prescription and buy an APAP machine like the Airsence 10 for Her from Resmed (ys, I know you are not a her). You could get the machine and mask for ~$1,000 and self titrate with some guidance from the folks here.
Your data reports would allow you to fine tune your therapy and determine if you are among the unlucky few who have a more complex problem. If so you could still do the sleep study later and proceed accordingly.
You would still need a prescription and without the sleep study your insurance company wouldn't even talk about paying any of the cost. You might compute your deductables and copays, time and aggravation. Then decide which approach is right for you.

[palerider]

You could get the machine and mask for ~$1,000 and self titrate with some guidance from the folks here.

I just got a s9 vpap auto off craigslist for 220$ deals can be had

[jilliansue]

Pale Rider, that is a GREAT deal! Craigs list you say...... I was just looking at the second wind website...

BTW, I noticed where you list that you live!

[palerider]

Pale Rider, that is a GREAT deal! Craigs list you say...... I was just looking at the second wind website...

BTW, I noticed where you list that you live!

I guess I should change that since the scare and furor has died down, so to speak.

[VictorC]

You really should get a sleep study. There are many sleep disorders, so you can't be sure what is going on with your body unless you have a sleep study done. Your pulmonoligist doesn't know that you have OSA. He is guessing based on his examination of you and what ever symptoms you are presenting. So while you can pay out of pocket for a machine, and use it to auto titrate, that may not help you if you don't have sleep disordered breathing or if your type of sleep disordered breathing is something that requires a specialized machine.

By the way, it did take me several months to get my CPAP machine. Most of that time was spent waiting for the sleep lab to schedule a time. After I had my sleep study, it took another three weeks to get my CPAP. The DME took that long to find out what my insurance (UHC) would cover.

[Tatooed Lady]

Being told you're going to have to take a sleep study sucks...and when you ramp yourself up for it, and say "fine, let's get this done with," then you realize that while that sucked rocks, NOW you have to wait (and sometimes wait...and wait...) for the results...and JUST when you think you dodged that bullet, because "hey, no news is GOOD news!!" you get "the call" (insert favorite cuss phrases here)...so, you now know you have OSA, or whatever variant, and will be issued a machine, mask, etc. But then it's AGAIN the hurry up and wait game, and by the time you finally get to physically TOUCH the machine, it may or may not be a "good one" (fully data capable is the most important part), so if you tell them to shove their brick where the sun doesn't shine, you get to argue WHY you need data capability (possibly dragging the doctor who originally started this circus into the mix), and then you again have to WAIT, because Joe Schmoe down the street just got the last one, deal with it, Mr/s High Friggin' Maintenance!

Long and short of it, be prepared :
1) to HURRY UP AND WAIT,
2) argue with the DME over getting a machine that'll show you EXACTLY what's going on with your therapy,
3) turn professional Thumb Twiddler, earn a badge in it
and 4) to repeat yourself. Repeatedly. And maybe again, just for good measure.

My situation was the above, except I didn't have to argue with the DME for a good machine. My company apparently makes it clear that the drivers require the full data machines...and I never saw nor spoke to the doctor who read my sleep study results and "prescribed" the air pusher. Go figure.

Edit: Aww, shoot...encouragement part here. Once you have your Precious at home...and you start therapy, you'll find little things that you had NO idea were wrong with you that suddenly change for the better. Less getting up to pee at night...fewer morning headaches...if you aim your head the right way and let the mask vent just so, you can clean dust bunnies off the headboard. It's all good.

[kteague]

Was it worth it? YES! As far as suggestions, you have your eyes open, so you're ahead of the game. Just try to not be so tainted by all that could go wrong that you have difficulty building possibly meaningful relationships with your providers. Expect the best but be prepared for things to not be so. One thing to consider is if your insurance coverage has a deductible that starts over at the beginning of the year. If that matters to you, talk to those involved about expediting things or coordinating them in a way that works best for you. Sometimes a test can be done sooner by being willing to fill in if there's a cancellation. If in talking with one sleep clinic and getting their timeline you don't find it acceptable, you could talk to others. And some people find by the time they pay all their rental period copays and deductibles they could have bought a machine outright online. Sorting through this stuff can be a royal pain, but the good part is once you get settled in with the treatment, it will likely become routine for many years. Good luck going forward.

[palerider]

.if you aim your head the right way and let the mask vent just so, you can clean dust bunnies off the headboard. It's all good.

*rofl* *snort*

[jencat824]

My two cents worth: Although a pulmonologist is one way to go in terms of sleep medicine, another avenue is a neurologist, preferably one who specializes in sleep medicine. If you have just plain ole garden variety Obstructive Sleep Apnea then that pulmonologist is all you may need. If you have other sleep disorders, or another type of apnea, such as Central Sleep Apnea, then a neurologist is a better fit. I'm not saying the pulmonary guy isn't a good doc, it just depends on your diagnosis as to which doc would be best for you. That said, I would opt for the neurologist. I started with pulmonary & after several months (almost a year) I had to be referred to a neurologist. Based on my own personal experience, if you are going the doctor route, I would recommend finding a neurologist who has a specialized board certification in sleep medicine. If you decide to go it on your own, ignore what I just said.

Either way, you are miles ahead of where I started almost 15 years ago. You found this forum & are educating yourself. Starting with the link in Julie's post is the #1 place to begin. Note carefully any machine you are going to get, take notes on the details, such as model numbers, run hours, etc, from whatever source you decide on & post here before accepting that machine. That way forum members can help you to make sure its a fully data capable machine & is the best machine for your money. Forum members usually respond to a question like that fairly quickly.

Lastly, remember that as you start this journey, we are all individuals so what is right for me may not work for you, etc. You have definitely found the right place to come for knowledge. And, welcome to the forum.

Jen

PS, don't give your credit card number to any DME for them to "keep on file" & avoid Apria as a DME if possible.

[rsp5820]

Thanks to all posters and PM-ers for your insights and encouragement. I have spent several hours reading the various tutorials and feel a lot more confident that this will all work out (unlike most mainstream medical care in America). I decided to proceed with the formal sleep lab study and I will continue my education (here and elsewhere) to make sure the job gets done right. I've met my $10k deductible this year so I am glad the study is scheduled for Nov 24 and will be covered (assuming they cover anything...). The doctor follow up is Dec 15 so I may or may not get the device covered this year. I am on standby for cancellations at both places. The doctor has a good rep and sounds sensible AFAIK so presumably he will be amenable to writing order for a suitable machine. I'll tell him that the he doesn't have to be limited by the insurance company since I am willing to pay cash to get the best device for my needs. If he won't, I'll find a doctor who is more open minded.

Just hope the sleep study doesn't reveal a brain cloud a la Joe Banks. I had a head MRI a few years ago and they said "There was nothing up there".

Your point about building relationships is well taken - if you can find competent and helpful providers, take advantage of their good service and help keep them in business!

I used to think I could not tolerate the mask at all. Well, my sleep apnea has gotten so bad that *anything* is worth tolerating to breathe again. I guess this is like an addict hitting bottom before truly changing.

TatooedLady: WOW! What a roller coaster of a post! But it did cover all the bases - albeit from a cynical viewpoint (Are you from Chicago? NJ?) and it wound up at a good ending.

Jencat284: I did see a neurologist for (a) leg neuropathy from TKR (total knee replacement) surgical trauma, (b) what I thought *might* be carpal tunnel, (c) occasional full body "twitches", and (d) what I jokingly called Leg Heebie Jeebies where I get brief overwhelming sensations in the lower legs. He is a well known research guy whom I met when my wife had a stroke and needed eTPA injection RIGHT NOW. He really listened to me and asked the pertinent questions (I have attended a number of neuro exams for family members and remember the routines), then examined my wife, then did the injection himself on the spot. Woosh! Her brain fog lifted and 99.99% recovery. When we went to his office for 6 month followup and saw his typical patients (severely paralyzed stroke survivors) we realized how fortunate we were to have the eTPA work. He was also very amenable to, even insistent on, vitamin therapy, so we got along just fine. So I saw him for my problems. He ran EMG, EEG, and various specialized blood tests (I looked them all up and determined he was checking for everything and anything). The EMG showed advanced carpal tunnel (he urged immediate surgery because I had already waited far too long - turned out 99.99% successful). EEG and blood tests all unremarkable, no trouble indications. Leg neuropathy is common with TKR, he recommended a bunch of exotic B vitamins - which I was already taking on my own research, so that was "learn to live with it". The twitches are "myclonal spasms" which may or may not be sleep apnea related. They sometimes happen as I drift into sleep (when my PO2 always dips for a few seconds), but they also happen while I am fully conscious. Heeby Jebbies are probably RLS, no real cure or therapy. I presented all these tests and other neuro information to my pulmo guy and he said "You are a poster boy of all the major symptoms of sleep apnea, and these neuro tests strongly suggest there is nothing else wrong with you. But we'll do the sleep study anyway for various non-negotiable reasons."


I'm sure I'll be back at some point with more questions.

Rick
Over and out.

[Tatooed Lady]

TatooedLady: WOW! What a roller coaster of a post! But it did cover all the bases - albeit from a cynical viewpoint (Are you from Chicago? NJ?) and it wound up at a good ending.

My takeoff was a bit rough...but the flight's been pretty good to me. I know the stewardesses up here. And they have in-flight movies and peanuts. And the destination is better health, so whatever it takes, is what it takes.

Don't offer up cash if the DME is giving you a hard time. The doc should prescribe a machine to fit your needs, which regardless of bi-level, auto, straight pressure, etc...should be a FULL DATA unit. You want to be able to check your info on Sleepyhead or whatever software you choose to use. Even if you don't understand it all at first, you can start off looking at the graphs and charts, asking questions here and learning about how YOUR therapy is working FOR YOU. If you get a machine with the Auto adjust, you can still go straight CPAP. But if you get a straight CPAP machine, there will be no Auto feature.
If you feel the need to tweak a setting, you'll know WHY you want to change it, and you'll have a clue as to what changed because of the new setting. And I've found that since I started therapy in May, I've bumped my pressure from "wide open" to a more useful 8-15cm. Partly due to season changes, I'm sure. Humidifier settings have changed as well, and with the winter weather, I've added my heated hose option. So feel free to test and tweak while learning. If you keep track of where you started, and make changes in small steps, you can always backtrack to something that may have worked better for you.

Okay...I've rambled enough for one post...time to make the donuts...or shave the iguana..