My strange story

[the_nap_ster]

the_nap_ster,
AS I said I already have an appointment with another MD. should I call & request that a copy of my sleep study be mailed to me or ask to come & pick it up? I am scared that they have not been truthful with me & won't want me to get a copy, As you can see I am not happy with just being pulled around by my nose so i can feel all warm & fuzzy inside . I want=demand the Doctor do there job or refund my money . These jokers have made big bad mistakes on this one..

Yes, you have a legal right to a copy of your own medical records/test results. Some doctors are awesome about this and will just print you off a copy. Some doctors will try to monkey around and charge you fees for copying your records and make you wait months until they are mailed out. The latter is within their legal rights, but they are being asses when they do it.

I suggest calling your old doctor's office and telling them you have an appointment with another doctor, and you will need to bring your sleep study data with you to the appointment. Tell them you will be coming by the office to pick it up so you can hand-deliver it to the new doctor. They tend to be much more helpful when they think they are releasing data to another doctor instead of a patient themselves. And once you have a copy of your sleep study, your new doc can make a copy of it, but you can keep a copy for yourself.

If you want help decoding the sleep study, there are many knowledgeable people here who can tell you exactly what the numbers/abbreviations mean. That way, you can interpret it yourself.

[kaiasgram]

Having had that experience, did you gain any insight on why humans are so stupid to not use CPAP in the first place?

I would be careful not to conclude that everyone who doesn't use or quits CPAP is stupid. I'm not saying it's smart to quit once you know you've got apnea, but even in the short time since my dx I've received NO support or education/information from my HMO to help me be a CPAP-compliant patient. I've had to get all kinds of help and support from this forum and from people in my life who have some experience, and that is the only thing that is keeping me going and trying to adjust to CPAP. Doctor? -- WHAT doctor!?! I was never given access to a sleep doctor, the respiratory therapist never returned my calls/emails requesting help during my titration week, and despite the astronomical cost of my health insurance it does not cover any of the CPAP equipment I need so I had to pull out a credit card and pay for it with money I don't have. I'm not even sure I have the optimal machine for my needs (I have Auto CPAP but suspect I need BiPAP for more exhalation relief). I am doing everything I can to make this work, but it's very easy for me to understand how/why so many people give up. Yesterday I ran into an old friend and was telling him about my dx -- he said that he had apnea too but could never sleep with that machine. I asked if he had been given some different masks to try and he said no. I imagine this is not an uncommon scenario.

Much more practical and emotional support is needed for patients trying to be compliant with CPAP therapy. Let's not call those who can't do it stupid, let's hold our medical systems and insurers responsible in very large part for low patient compliance.

[idamtnboy]

#1 thank you for letting me join .
(they did not ask if I lived in Georgia ,so I joined any way)
Tanks giving day last year I was admitted to the hospital wit DOUBLE nemonia, I was BLUE,could not stand, & could not breath MY LUNGS were full of liquid. They put the mask on me & forced air in so I coule breath. I was in intensive care for 5 days & nights mostly with the cpap on & making me breath. I started clearing up & stayed in the regular hospital for 5 more days. At home I had trouble sleeping lying down to sleep,my lungs were not better yet, But I could sleep in a recliner just fine.Now 7 months later every thing is 95% better . My doctor says I need a sleep study . I went. Now he says I must go for 1 more to get the bpap machine all set so I can wear it every night. -NOW- I sleep all night every night except to go to the bathroom sometimes. I do not snore,I sleep fine, The 1st sleep study said I had 149 events... thats BS!....
.................
PS I have one of those things that checks blood ox & pulse it clips on your finger ranges from 90 to 97 ox level.

Four things. A CPAP does not force you to breathe. A ventilator does that.

Going to the bathroom at night is one of the symptoms of sleep apnea. I used to get up 1 or 2 times every night. After CPAP I get up 1 or 2 times, at most, per week, and almost always after drinking a lot of coffee just before going to bed.

The 149 events is BS only if you know for certainty that the sophisticated monitoring equipment that generates that information is grossly malfunctioning. Do you have the expertise with medical electronic equipment to make that claim?

Consider yourself lucky the doc sent you for a sleep study without an oximeter test first. That is usually the first step, and with your readings he may not have referred you for a sleep study.

If the 149 events were for the entire night that is probably somewhere close to 20 per hour. That is moderate, not severe sleep apnea. Consider yourself lucky it is being caught before you progress to severe levels. If the 149 is per hour, you're lucky to still be alive.

[archangle]

I believe that the medial mafia would kill you in your sleep and sell the organs if they thought the benefits made up for the risks. I don't think the benefits of lying are worth it for sleep apnea for them. They might stretch the truth a bit, but there are enough people who really do need CPAP that they probably don't need to lie.

I suspect you really do have apnea and run a great risk if you don't get it treated properly.

Of course, the medical mafia will tend to figure out how to treat it in the most profitable way.

There's also no reason for him to be an ahole about it.

The oxygen thing is called a Pulse Oximeter or PulseOx. Do you have one that records data all night long, and then you look at graphs on the computer? If it's one that just looks at your current O2 when awake, it doesn't tell you anything about apnea. You could be on the edge of death from O2 deprivation, in your sleep, but once you wake up and start breathing normally, the pulseox will show a good O2 level by the time you wake up and look at the reading.

[Tino2You]

... Don't trust the doctor -- trust the data....

nap_ster,

I love it. It could be a great tag line!

[ekubaskie]

It'll get OnT, just run with it...

A "little" while back (1986) I was out of work, and happened, just as things were getting particularly tight, to run into a recruiter for a trade school. I'd been a drafter for a decade, and a computer guy (sales & service) for about 6 years. The two were finally coming together with this new software called "AutoCAD", and the school was doing a class. Student loans were available, and you could even get enough to cover a chunk of living expenses.

I signed up and got the loan. I took to the subject matter pretty well, and the studies went well. But I needed more to keep fed, so I worked for the school as a lab aide, assisting students in the office skills and computer classes with stuff like word processing, spreadsheets, database, and programming. Working FOR the school, and the following summer I actually taught the CAD class for a later set of students, I saw something. The school itself was pretty much a racket. Promise the world, make it SOUND like you guarantee a job afterwards - and take any warm body that qualifies for the student loan.

Without REALLY applying themselves, many (maybe most) of the students had no hope of a career at it. And honestly, the school didn't care. or help. $$$. Get that student loan in their account, and the work is over. A racket.

It is easy to see why many would see the sleep study biz as no different. Sleep labs tossed together, half-qualified techs, and charge FAR over what the insurance companies will pay. Those who HAVE insurance think they got a bargain! Those that don't - they owe the lab the full amount! 4 beds in a lab means better than $350,000 a month gross at the insurance payouts I see here. And they have to keep coming back! $20 for 2-1/2 square inches of filter fabric! Twice that for a hunk of foam rubber! and $400 to a thou for some molded plastic or a vacuum cleaner hose! Whatever we may like to think, our masks & gear aren't really much more than that, protected by patents from being sold for $25.

That kind of money attracts slimeballs. Many of us have called our DMEs nothing less. Some of us got lucky and got good ones. Maybe some really good techs work at a place that doesn't deserve them, but the patients do - and they try to give their best. (My case & my past.) But notice that, just like the school, the "student" that really applies him/her self comes out OK. That's what forums like this are about - patient power through self-education and social networking.

For the OP, listen to the folks here. THEY aren't making any fortune off your health issues. Take their advice, SHOP AROUND for as good a sleep center as you can find, and get yourself better. If your attitude posting is really you, I think maybe you really need the help. No miracles - I haven't had one. But I didn't really have it that bad - just AHI 37.5, and arthritis on the side to keep me grumpy. But I saw a friend yesterday for the first time in a year, and he would not shut up about how much better I looked. Upright, good color, not half-dead... maybe there IS something to it, eh?

Yeah, I can see how easy it is to see this whole thing as a scam. Problem is, the health issues are real.

[smurfyabs]

I want=demand the Doctor do there job or refund my money . These jokers have made big bad mistakes on this one..

It sounds to me that they are doing their job by requesting the second study. It's you that are not taking responsibility for your own health and well being. Wearing a cpap is not the end of your world, that's a pansy/stubborn way of thinking. It's like a child crying that they don't want to see a doctor. Open your eyes and smell the roses, cpap may be the key to a better existence for you. And as far as them threatening death, that's not far fetched at all. People DO die from this. People have heart attacks and strokes. This is very real.

[chunkyfrog]

Dying is not the worst thing that can happen.
Apnea leads to strokes; strokes can result in some very bad stuff.
You could wind up bedridden, unable to speak, or feed yourself.
Think adult diapers and someone having to change yours--someone you care about.
Think of your family having to spend everything you've worked for on keeping what's left of you alive---
I prefer the alternative--My lovely mask, hose, and machine--They keep me alive, well, and functional.