New and Abused - Confusion with the process

[SuperSleeper]

[parts of this thread were copied from our old forum]

'm sure many have had similar concerns as I and to be honest I first saw it when looking to find some non-scam information about all this apnea/CPAP/testing stuff and it looked like you guys may be honest enough to help someone who is just now trying to figure it out.

I have apnea. I snore so loud I can't sleep in the same building with others. I stop breathing and wake up a lot. I am tired all the time and ache, have chest pains, and back pains when I awake. I've been in the hospital for other things and they can't keep an O2 monitor on me because the moment I fall asleep it triggers the alarm. My GP says he thinks I may be waking up somewhere around 50 times an hour.

I finally have Medicare and so technically I may have some way to get the test and the hardware. I've been finding that this may not be true as so far the best I've been able to do is get so my co-pay just for tests is over $300. I live on $661 a month. Part of the problem is they don't want to get to the calibration stuff, they first want to do a test to decide if I have what I, my doc, and anyone who's tried to sleep within a mile of me already knows.

Then there are the equipment scams. One wanted $80 a month for 13 months and only then would bill Medicare. This gets them paid FIVE times the retail price of the machine. Another wanted to sell the machine but only if I agreed to pay $40 a month for 'maintenance'. The testing doc wants me to sign on for an endless number of visits at $50 per (my co-pay) and establish a relationship. Hmmm... I think for that kind of 'relationship' I'd at least want a movie and a meal before losing my virtue!

All this for something that MAY help me feel better and live longer. However, it seems at the cost of some real misery. I read about sores and gagging, and gas, and claustrophobia and on and on. Going by what I have HEARD but have no way to confirm, this CPAP stuff sounds only slightly more preferable than a fire ant enema. Like most things, I also suspect there's a lot I do not know and in the last few weeks of researching haven't got close to understanding.

I spoke to a doctor friend and he too is perplexed. He has tried to determine what the black magic of calibrating a CPAP is, but says the manufacturers and practitioners keep these secrets as if they were some kind of sacred religious documents and so has trouble helping his patients. (He does a lot of pro-bono work with very low income people and cost can be the difference between treatment or none, life or death.)

So here I am, looking for some wisdom so I can actually afford to get the treatment, be able to eat and have a place to live after the 'specialists' get done fleecing me, and actually get the right stuff. That it seems like almost a cult deal and I expect to be asked to drink Kool-Aide next is disconcerting. Would you fine people like to offer some wisdom to a semi-senile old man before he makes too many mistakes? (My idea to convert a WWII gas mask to accept a furnace blower fan and garden hose notwithstanding.)

Why two tests?
What should a CPAP really cost?
Do those nasal gear things work? (I am REALLY claustrophobic!!!)
Does this stuff work or is there a better way?
How often are people unable to adjust to having air pumped down their gullet (it looks like the air version of waterboarding to me!)?
What else should I know?

Thank You!!!

[SuperSleeper]

First off, be aware that the vast majority of people on the 'net with their horror stories are just a literal handful compared to the rest of the CPAP users who have no reason to go on the 'net to share how wonderful it is. Kinda like the greasy wheel has no reason to squeak so it doesn't.

Second, Medicare is run by idiots. For the most part, it is a system that really and truly works. And then there are the what-the-hecks that make sane people stop and scratch their heads (again, it is the squeaky wheels that people notice). Sleep apnea tests are part of it. It is cheaper to do a 'split' test meaning for part of the night they check to see if you have sleep apnea and the rest of the night, they 'titrate' you. This means you have the mask and they determine the best bottom line pressure you need. However, Medicare and other insurances think it is better to determine if you have it first (one test) then have you have another test (done later) to figure out pressure. This is what I had to do.

As to cost: http://www.apneaboard.com/forums/Thread-...plier-List it is a list of suppliers on line. It will give you an idea of the real cost. My first machine was 'rented' for nearly two years and in that time, Medicare/Medicaid could have bought me about 7 machines. My current machine will not quite be that bad but I am watching the payments and keeping track. I've not checked but there might be some online dealers that will help with insurance but I'm betting most will not. You can contact the Medicare office and ask how you should go about getting one online (probably reimbursement). Or, better yet, and fun too, is tell the DME that you are going to get one online because you don't like their costs. They may say go ahead or they may suddenly discover they have a sale. Shop around at other DMEs too. CPAP is a huge market right now and there may be several in your area that sell them.

If you are that claustrophobic, then I suggest you look into the nasal pillows. There is little in front of your face and they are easy to remove and adjust.

Yes, this stuff really works! Honest! It may take a while (a week or two) before you notice a difference or you may notice it right away. Some people struggle with it, others do not. The hardest part is finding the right mask. The second hardest is adjusting to the air.

There are alternatives to the CPAP machine. There's surgery, dental devices, nasal valve thingies, etc. I've never heard of anyone who has had the surgery and is 'cured'. More like their pressure requirement lowered (if at all). I have a bad gag reflex and dental devices make me ill just thinking about them!

No, it's not exactly like rushing air down the gullet. Yes, there can be stomach gas or intestinal gas issues as you and your body adjust but, for the vast majority of people, this goes away. When my pressure was increased, I had some morning belches that would have made my brother jealous! But now I barely notice the air and go to sleep easily.

What else should you know? You aren't alone. You're not anywhere no one else has ever been before. Even if no on here has been there, done that, we at least have a very good idea.

Push for the sleep test. Call the Medicare office and ask what you need to do to have the split study vs two. Shop around for a medical dealer you can trust. If you can't find one near you, go online.

[SuperSleeper]

Thanks for the response. I've been procrastinating but finally sent off the email to tell my GP to order the tests. I agree about how on the internet there are a lot of people who seem to spend an inordinate amount of time finding ways to trash everything and everyone. I'm one of those trust but verify types, having learned that 'experts' often aren't and too many people like to vent and hurt rather than inform and help. I'm glad I found a place where people can talk rationally and the shrillness is muted...

OK, so I should get a call for the first of the two tests in the next day or so. According to the gal at the sleep clinic (pleasant and friendly) she would try yo get all this taken care of before a new deductible started after the first. I'll assume they will monitor me and see what's what. I can sleep almost any time and any where, given I am so tired all the time, so I expect no major drama. I do wonder about the connections there and with the CPAP though. I don't recall ever sleeping on my back and I usually make a few dozen revolutions in a night. Had to stop using a top sheet as it would get wrapped all up! I hope you don't have to sleep on your back - that may be harder for me than any other part of this.

I also looked at rebuilt, repaired, open box, etc. machines. Frankly, they seem to be priced more reasonably and the ones I saw had 2 and 3 year guarantees. But I also see prices ranging from around $150 to over $8000! Things like humidifiers, memory, the deal where it changes according to need and changes inhale/exhale must have a lot to do with this. Are there things I should know about the machines that would help me get the right one?

As far as cost is concerned, I can't see how paying over and over for one makes sense. You mentioned renting for so long and wonder why? I was told Medicare would buy a new machine every 5 years and masks every two. Is it that you have to pony up and buy it and then wait for reimbursement? Is there a reason rental makes sense? This all seems like a con-game if judged by the weird convoluted sales/lease/rental/maintenance schemes that are out there along with nothing of any value for explanations. Thanks again!

As a PS: I was scrolling around this site and saw a mention of head injury as an issue. I did have a closed head injury years ago that has caused memory problems and for all I know may have made the apnea worse. Is there some problem using a CPAP if you've had your type scrambled?

[SuperSleeper]

Brain related sleep apnea is called central apnea. With it, you just don't breathe (the brain decides it isn't necessary). CPAP is not the usual treatment for it, but rather a similar machine called VPAP. When you have the sleep test, they will be able to tell if it is a central apnea event or an obstructive event.

No matter what the business, I am always leery of anyone who repairs and sells the same expensive thing. "It's broke, you need a new one." makes me wonder if I really do. So a sleep clinic that sells machines or a doctor's office that does? Makes me twitchy. Doesn't mean they are not legitimate! Just makes me wonder whose interest they have the most invested in.

You want a machine that has some sort of exhaling relief, such as Resmed's EPR.
You want a machine that records data including AHI, leaks, etc. So avoid the most basic models such as Resmed's S9 Escape.
If you live in a dry environment such as a desert or have dry heat in the winter, you will want a humidifier. I live in the US South and don't use mine in the summer but do in the winter.
I have Medicare and Medicaid and am never sure which is paying for what when. I get basically a new mask every 3 months and can get a new machine every 5 or 6. With the mask I am also sent filters (enough for 3 months) and a new hose. Every 6 mos (I think..it might be a year) I got a new humidifier tank. I don't pay for any of this as I'm sure one of the insurances picks up what the other one does not.

Oh, and keep records of everything. Ask for the sleep report(s). They'll try to tell you it is a huge document you would not understand but tell them you want it anyway. Read the contract you'll sign with a DME and ask specific questions about what comes out of your pocket when.

[SuperSleeper]

American Academy of Sleep Medicine (AASM) accredited sleep centers :
http://www.sleepcenters.org/
Find out if your doctor is accredited in sleep medicine:
http://www.abms.org/

[SuperSleeper]

Thanks for the input. I am now awaiting the orders so I can get the first test appointment. It's a rush so this may take a while!

I have a feeling the best thing I can do is get the script so I know what I need and then go shopping. On your listings is an outfit that offers used and reconditioned and even some new units and they seem to at least be a serious business. Maybe my idea of making one out of a WWII gas mask, a garden hose, an old furnace blower, and lots of duct tape won't be necessary!

Since I refuse to allow Medicaid to dictate my every move (I'd have to get permission to leave town! I'd have to document if someone bought me a meal or if I slept in someone's home on a visit! I'd have to submit to random but regular invasions of my home to make sure I don't have anything worth anything!) I will probably just have to cut off my meds and eat ramen more for a while and buy a machine instead. Hey, getting old and crippled ain't for the weak!

The brain-centered apnea is probably what I have considering I stop breathing so much. I wondered if the old brain damage was a problem with the BPAP machines or something. I don't find any more info on it.

PaulaO: I appreciate the various specs you suggested, it gave me places to add to my education. I've resolved to be cooperative, but I'll insist on getting all the records as you suggest and do my own shopping. I simply do not have the luxury of wasting any money at this point so I really have to watch it or I won't be able to afford it at all. When I get the info, I think maybe I will post it so maybe some of you can tell me what it means. Thanks!

[SuperSleeper]

I got the evaluation yesterday. I was there for over three hours, having questions asked, tests made, having my insurance checked, removing the contents of my wallet, and seeing the doctor. As cynical as I am, so far I have been treated decently, the process appears to be rational, and no one has ducked questions or been deceptive. After my initial experiences with the equipment vendors, I was ready to jump down throats, but I got professional treatment and have no qualms.

I go Sunday for the first sleep test. I am told my apnea appears to be pretty severe and they want TWO tests. This first to evaluate and gather data. I think the main concern is that since I appear to have such low blood oxygen and so many apparent apnea incidents, they want to both make sure they have sufficient data and make sure there is nothing else going on. I think they were also concerned about my struggle to stay awake through the whole process. The doc is a pulmonary specialist.

I will remain vigilant, question everything, and assuming I survive will let you know what happened. The titration test night is the one I think I worry about the most, though. Doesn't sound like a lot of fun. Is it that bad?

[SuperSleeper]

After being terrorized by two doctors and several staff, warned that if I did not get the tests and treatment at least two days before yesterday, and told I would almost certainly risk a stroke, heart attack, kidney failure, falling asleep at the wheel, brain damage, retardation, and I'm pretty sure syphilitic sores on the eyeballs and terminal stinkfoot, I rushed about like a man on fire getting things arranged. I drove to Fort Worth on short notice and I got the first sleep test a week ago.

Sticking with the panic mode they appeared to want me to engage in, I went along with the program and made time to accommodate their schedule at the sleep center. It was not the best sleep I ever had and I was semi-conscious and looking like an escapee from a criminal psych ward the next morning, what with the electrode goo in my hair and red eyes and rumpled look, but it really was not bad. People were friendly and seemed professional and efficient. I know I slept because I remember waking up several times and the tech assured me that I even made it into REM at least once. They would not say anything more, including if they saw apneas or how bad the snoring was. I would have thought their many years of experience would have given them at least basic knowledge they might have imparted.

I called the clinic and asked about results and was told they'd call when they got to reading the data. No other information. So at this point I could have sleep apnea in whatever form, I could have asthma, or I could have terminal lung cancer, but no one is talking. After all the panic and urgency, it seems odd that at a time when a patient is sweating out a diagnosis, the clinic falls asleep on the job. I wonder if this kind of thing doesn't end up getting the patient raw enough so they don't cooperate well? Could it contribute to the low percentage of people who successfully tolerate and use the machines? I guess what I am saying is if you start feeling like a numbered sack of meat with an insurance card, maybe you stop trusting or feeling confident after a while.

When asked if I could get to the titration this weekend (why would you schedule this if you don't have test results yet?), I said that I would do whatever necessary to fit their schedule and asked only a couple hours notice. Everyone was on the same page and real friendly. That is, right up until I asked to get a copy of the raw data and video when I called in last Monday. I figure that I am paying for it and as a patient this is covered in the federal laws granting me full access to ALL my medical records. I assumed that this information should be something I have when I leave the area in a couple months and asking for it in advance will avoid chaos. I offered to supply the DVD discs and made the request very politely and I did not make a big deal of this - just a simple request. It got very quiet, the scheduling for the titration was dropped, and I have not heard back since. Apparently it's not so much of a rush deal and it's not as important as they thought, right?

[SuperSleeper]

That's very odd. Years ago, when I was diagnosed, I was told it was raw data and I'd not get anything from it. And it was umpteen pages long, etc etc. I did, however, get all sorts of final numbers from the doc's office.

So it is odd that you asking caused them to get all quiet. I've not looked much into the new US HIPAA laws but, basically, you have the right to ask for and to receive your own health records. Until this law was made, it was very rare to gain access to your own information!

Ah, found this:

http://www.hhs.gov/ocr/privacy/hipaa/und...index.html

Basically, HIPAA is about privacy laws, about who the doctors can and cannot send the information to and how much of your private information can be transferred with those records. It was astonishing how much private information (not just SS# but addresses, phone numbers, insurance numbers, credit card numbers, etc) was being passed around. Anyway, also included in HIPAA is the right to ask for your own records. Not just the records themselves, but who else those records were sent to or who else requested to see them.

It *could* be this clinic has not yet been asked and does not have a policy in place but I sincerely doubt it.

Call them back. Ask again, politely, for the appointment and for copies of your records. It could be the video they are stumbling over as not many people ask to see it. You don't necessarily need it except for your own purposes. I doubt any doctor would need to see it. Anyway, as you are asking, keep a log book of each call, who you spoke to, when and for how long, what the results of the conversation was. End each conversation with a statement that says what happened during the conversation: "My appt is on Monday and we have decided such and such, correct?"

Good luck and keep us posted!

[SuperSleeper]

I agree you have a complete and legal right to your medical records and this would include a copy of the full sleep study report, a copy of the video (you may have to pay a small reproduction fee for a copy to be made on DVD or VCR, however) and any other pertinent records.

You paid for the medical help (one way or another) and they got (or will be) paid for their services. So stick to your guns politely but firmly using the techniques Paula outlined above.

Let us know how the continuing saga goes, deadman.

Oh, and if I didn't say it before, welcome to Apnea Board!