deadman Wrote:You both have an organized and logical way of thinking about this stuff and that makes sense to me! I will continue to pursue this and see how it all works out. The idea of simply quitting isn't an option as until I have completed the process I will not have sufficient information and experience to make that kind of judgment. I can see, however, that the problems within the process of diagnosing, testing and titration - followed by the ordeal of equipment purchase and maintenance - means a lot of people who need help will not get it and/or will fail treatment. Even as a rank novice to all of this, I can see where it is unnecessarily difficult and frustrating and I know people well enough to understand why this will result in them walking away from treatment.
I will say, speaking as a journalist, there are aspects of this whole process that are pretty strange. I should also say that there appears to be two separate camps in this part of the medical industry. One is quite obviously a group intent on resolving a medical problem that is both serious and difficult to resolve - especially when it comes to tolerating the treatment. The other appears to be a group that is working to fleece whatever unwary sheep venture into their lair, and the welfare of the patient is not close to a priority. I guess this is just human nature, but no matter how often I find it, this kind of exploitation and abuse offends me and makes my toes curl.
I want to thank those here who have offered wisdom and let you know that it has been helpful and has given me leads to resolve some of my own frustrations. I'll keep going and let you know as it unravels what happens - using your advice as part of my guidance as I think it makes good sense.
PaulaO Wrote:You know, since they acted all weird and didn't schedule the second test, if they get all weird again when you ask the second time, just get the second test THEN push for the records with all you got.
archangle Wrote:Do NOT be in a hurry to get a CPAP machine. You've survived with apnea for at least the past XX months without one, so a few more days won't hurt.
In particular, do not let the doctor or sleep clinic send you to their favorite DME (CPAP salesman) who they like to send business to.
Do NOT!!!! let the DME choose the CPAP machine for you. The way most insurance pays, they get paid the same amount of money no matter what machine they give you. You end up paying Cadillac prices, but they'll slip you a Chevy car if you don't watch them.
Sometimes, they will try to scam you by having a machine ready when they give you the results of your sleep test. Be sure you know which kinds of machine you will be willing to accept.
Cheap vs. better CPAP machines have vastly different levels of data. A good CPAP machine is like having a mini sleep test every night. A bad machine only records how long you've had the machine turned on and breathed through it.
The most common manufacturers are Philips Respironics (PRS1) and ResMed. The PRS1 PLUS machine is the one to avoid. PRS1 PRO or Auto are fine machines. Auto is better. There's also an "AutoIQ" that I don't like. The AutoIQ falls between the PRO and Auto. ResMed Escape and Escape Auto are also to be avoided. ResMed AutoSet (Not Escape Auto) and Elite are OK. Many DMEs will lie about this and even show you the data card on dataless brick machines. The data card on bad machines only records how long you've been using the CPAP machine, not how well the therapy is working.
ResMed machines should be the S9 model. S8 models are obsolete. Any Respironics machine should say "Philips Respironics." The ones that just say "Respironics" are obsolete models.
You can look at some of the online CPAP sellers to see pictures of what the machines look like and to see the model names.
Getting a good machine versus a "no-data" machine can mean the difference between getting good vs. bad treatment. With a "no-data" machine, you are much more likely to have to go back for another $leep te$t.
With a good PRS1 or ResMed machine, you can get a free program to look at your own data and tell how well your therapy is working and fix your problems. With a machine with no data, you could be dying a little every night from apneas and you and your doctor will never know.
If it's midnight and the DME (Durable Medical Equipment provider/CPAP salesman) tells you it's dark outside, go check. Many of them are lower than used car salesman on the honesty scale.
deadman Wrote:It's day nine now and still no word back. I wonder if I am being frozen out? I also wonder if now that the test has been paid for or at least sent for payment from Medicare, whether I'll ever see the results or if I will have to start all over and pay for yet another test? I guess I am being punished for daring to step out of line a little, and they know how to make it painful! Go right to the wallet!
PaulaO: I think maybe I should have done what you suggested. I just had NO idea that a simple request for information would stir such a reaction. I think, though, I should probably wait until the end of the week and then contact Medicare to see if I can't salvage something.
Archangel: I have seen DeVilbiss machines as well. I know the company from another direction - industrial paint equipment. I know nothing of their hardware in this area. I also see that there are machines called CPAP, BiPAP, VPAP etc. What is the difference? Obviously the more stuff they do, the more they cost, the more likely to fail, and the least likely to be repairable. Even then, I have discovered that the doctor's referred DME wants nearly $7000 for a machine and I'd have to pay $1400 of that as a co-pay. I saw the identical machine, brand new, for less than $800 from what appears a reputable source with a service person who is open, clear, and willing to spend whatever time required to make sure you can figure out how to tolerate it. I am not so much in a rush about making the purchase yet because at this point I can't even get test results or information as to what I need, so I will take your advice. I do see that if this drags on I will end up having to pay another deductible, so I had hoped I could get it done before year's end. Oh, well...
To a related issue: I have seen what you have noted - some machines can not only record but analyze the data they develop. If this is the case, why could I not purchase one of the programmable and open-data machines and simply start at a very low pressure and work up until the data says I am breathing right? Or is THIS what the real scam is all about: Taking control from the patient so the used car salesmen can keep their little protected gravy train running? Honestly, people, it appears from my vantage point that this is one area of medicine loaded with cons, scams, rip-offs, and abuses. The more I get into this the worse it looks! I am really trying to keep an open mind, I have doctor friends who assure me that this is important and it works, but there is not ONE who has not already spoken about their frustration in working with the con-men. One who does a lot of work with disabled and elderly says the bureaucratic machine he faces is so confounding he has yet to find a way to get many of his patients treated. And with the disparity of pricing that varies with zone location, Medicare approval (they paid the $10,000 a year to be allowed to bill Medicare), and non-competition exclusivity, is it any wonder why Medicare is running out of money?
PS: I thought I had subscribed to this forum but I do not get email notices. What have I missed? Thanks!
PaulaO Wrote:You need a prescription to purchase a CPAP machine. But any doc can write it.
If you have a doc you trust, ask him/her to request the records for you. Or have them call and make the appt for you. They can't hold the records from other docs and there's no way you'd have to pay for the test to be done again. Find any and all paperwork you have from them and start a file. You should have one anyway.
Worse case would be you call and tell them to either send you the records within 5 business days or you file a HIPAA complaint.
deadman Wrote:I got a message yesterday, asking me to confirm an appointment today for a test review. The problem is that the first test had not been scored and the titration had not been done so this review was premature. After stumbling and mumbling a while and going through a few different people, they said the saw the data and I had apnea so I needed the titration test. They had a space open last night. I accepted.
I almost walked out, giving them the middle-digit salute, and it almost got to a shouting match when I refused to take the test until I got AT LEAST basic information. It turned out that the techs knew all about the scoring, knew what my situation is, but are forbidden by the doctor to say anything. They keep the patient completely in the dark until enough office visits are chalked up, feeding bits at a time on orders from the doc. I was finally able to make some sense to the techs and they 'DID NOT SAY" that I apparently have obstructive apnea, that the apneas stop at around 8, and that it's likely I will only need a CPAP. I have to pretend not to know any of this when I do see the doc. However, the tech said he or she will make sure the tests are both scored an all information will be complete for an appointment next week. It will be my last appointment.
The test went well after some initial discomfort and I was able to tolerate a nasal pillow type mask. However, I awoke after about 2 hours with chest pains. I was concerned and called the tech. We thought it might be swallowed air and indeed the pain eased after a couple belches. But it did not and has not gone away. My left lung hurts. It worries me. I am too worn out from the test and my 'normal' disability to drive. So far no response from the clinic. Typical lack of concern for the patient, I am learning. Oh, and while the mask was not an issue, the chest pain, the discomfort of the small bed, the wires, etc. I did not sleep again although I was 'half there'
So here's the question: Is one of the potential side affects of using these machines that your lungs could hurt a bit? If it is just a little 'stiffness' from stretching out the lungs or something like that? If so, I would assume it will wear off. I would also hope that this would recede after I use the machine for a while. Could anyone here help me with some information about this? THANK YOU!!!!
Quote:So here's the question: Is one of the potential side affects of using these machines that your lungs could hurt a bit? If it is just a little 'stiffness' from stretching out the lungs or something like that? If so, I would assume it will wear off.
I guess so but you need to talk to your doctor . It could be more oxygen coming in from the CPAP therapy .
PaulaO Wrote:It is common for the Lowly Techs (of any flavor) to not be allowed to give out the results. They are not Doctors and therefore know nothing. They only read the data and send it to the doc who then "interprets" it. Ha.
It is like with Xray techs or ultrasound. They can see the problem but can't say anything because they aren't doctors.
We know and they know it is bull crap but they truly cannot tell you the information. It is for their and your protection, honestly. Because the one out of a thousand that they get wrong? Oh boy.
deadman Wrote:I spent the day dealing with the chest pain. I tried getting answers from the clinic and got the boiler-plate legal cover: You should talk to a doctor about this. Of course, since this outfit (a north texas sleep center) is run by a pulmonologist and IS the doctor, what can that mean? I could talk to my GP, but he is not a pulmonologist - he just recommended this process.
So at this point, I have written a response, pointing out the foolishness of both this response to chest pain and the complete blackout of information leading to this stress and now anger and frustration. I have tried to be as kind as possible. However, what I really want to do is get ALL the test results (I think the techs did their job properly, even if handcuffed by greedy and abusive policies) and leave that doctor and his ineptitude with a single-digit salute as I fade into the sunset.
In fact this is the draft of that response:
I was a little surprised by your response. It was a matter of figuring out what was so wrong with it and I had some choices:
1: This started during a titration test. Never happened before. The logical conclusion is that something that occurred during that test had something to do with it. So asking whether there could be some cause you are aware of that could explain this pain and expecting you to have some ideas makes sense. I doubt air could be the cause after this amount of time, but perhaps you know something I don't.
2: Given that you guys operate a clinic specializing in this procedure, AND the doctor is a pulmonologist, you should be the people to consider what went wrong and what to do about it. No other profession I am aware of could, in fact, represent a more appropriate source for information about lungs, CPAPs, and lung pain. Going to a GP who knows nothing of me or of this to ask about your specialty seems irrational.
3: My GP doctor, as you well know, is 1111.61 miles from my current location, and so it is only wildly impractical to ask him anything. He did his part by recommending I go to a specialist and provided the order to do so along with the order for testing (which I had to pay for once again at your clinic). Asking him what went wrong makes sense how...?
4: While I appreciate your attempt to mitigate legal responsibility with your boiler-plate recommendation, you also know that this has no teeth. I have contacted you, the specialists in this medical area, and if I were to go anywhere else, they would almost certainly refer me back to you. You don't go to a plumber to find out what a vascular surgeon needs to deal with. And, again, because the options include (A) making an appointment somewhere with someone else at some later date and (B) a trip to the emergency room that costs more than my disability check for a month to walk in the door, this vague suggestion to go somewhere and do something else makes no sense. Do you commonly dismiss chest pains or is this some kind of policy decision?
This leaves me with even more questions. Among them are why I have been shut out of all of my medical information, still have no assessment from my first test sleep (and why it was not scored 10 days after I took the test), no idea what happened during the titration (because the techs are forbidden to speak of it), no idea what kind of or whether I have apnea or something else, and no access or response to my many questions other than to make appointment after appointment that I can not afford for someone to answer these questions instead of simply allowing basic information to be given to me.
I'm stressed. I have spent the night and day in pain. I've spent a week and a half waiting for what I was told was crucial medical information only to find the scoring not done as promised and a block on that information. I have been given the proper terrorizing treatment that got me concerned enough to get this done and then was dropped into the dark and left to worry about how all this affects my health without relief. I am short on patience as a result. So while I really am trying to make note of all this in a polite way, perhaps you can understand why I may sound a bit edgy. I ask that you take the jaded view of someone who has done this so many times it has lost its urgency, and substitute putting yourself in my shoes. I assure you it will put a different perspective on what has and is going on.
The problem is I need a prescription and so need those results to support getting one. I can't afford to go through the tests again. I am sure they could make it a long ordeal to get the data. I am angry enough to want to shout at someone, but this won't help my cause. I really regret having gone to this clinic as I am sure there are others who are more patient friendly and competent. This outfit should insult the legitimate specialists. Care to offer wisdom to someone who would really like to strap these weasels to a fire-ant hill and pour honey on them?
deadman Wrote:After yet another bad night with the pain and discomfort, I tried to find a doctor to see me. Nope. They all are booked for at least several days. I was referred to an urgent care clinic. Nope. They don't want to get involved and told me to go to the ER. Called the hospital. They will, of course, see me in the ER but at $750 to walk in it's more than I could possibly afford. I guess I have to just wait it out and see what happens. Great idea this sleep testing... After all, what doesn't kill you makes you stronger, right?