New and Abused - Confusion with the process

[SuperSleeper]

Well, campers, it turns out that it is some kind of local policy. If you have any kind of chest pain, none of the local doctors will see you. This was pointed out, finally, by one of them. I went to the ER, and complied with that total waste of taxpayer money to discover what I already knew: It isn't a heart problem! After this I got an education on Medicare again. It seems that because of all the illegal immigrants using the medical facilities around here, only a couple doctors even take Medicare patients at all and the earliest appointment I've been able to find is on Dec.27th.

Meanwhile that north Texas sleep center that I went to has still not responded to any of my requests for information. I have politely asked several times now for an explanation and resolution for the chest pain/discomfort issue and have been met with near total silence. The scheduler left a voice mail saying they wanted to make a follow-up appointment to set up a CPAP machine. Since I still have NO test results, the chest pain caused by the CPAP has been completely ignored, and they refuse to communicate with me, I think this is a waste of time. I have not even been able to find out if the pulmonologist who runs the clinic is aware of my problem. I wish I was able to say here what the clinic and doctor's name is so people would not be abused by them like I have.

There is good news. I was able to connect with a sleep clinic in Minnesota where I spoke to a very decent fellow about all this. He was shocked that the original clinic would behave so badly, but that's not the point. The point is that there are at least two situations where this kind of chest pain can happen. One is when the pressure from the CPAP 'helps' you to inhale deeply enough to stretch the chest and lungs and strain them or even cause small tears. I do recall that night taking a number of very deep breaths because it felt so good at the time. The second is that you can strain the chest muscles trying to exhale against the CPAP pressure. Both, of course, require that your chest and lungs are weak as mine have been from all the medical chaos of the last 4 years. Both are not all that common, but do happen and when they do a patient should be told what is going on - not ignored.

The solution now is (verified by a good friend who is a doctor) to rest, eat ibuprofen, drink lots of water, use a little heat, and wait for time to do what it needs to. It is slow healing both say so I just have to be patient. Once healed up, I need to use a CPAP that will allow me to start at a very low pressure and then SLOWLY ramp it up over weeks or months to whatever the therapeutic pressure is (I still do not know what this is). The problem was that the tech doing the testing has a job: To determine what the therapeutic pressure is that stops the apneas, They do not know if you will have the chest pain problem until you do. So it is not that the tech messed up here, but only that the people in the clinic are so arrogant and abusive that instead of communicating with the patient, they ducked and ran.

For what it is worth, I will try to follow through. I think this apnea thing needs to be dealt with and I think the CPAP is the right solution. While certainly not as good as some magic pill, it's not the intolerable torture device I thought it was and it seemed to work even in the short time I used it. I have learned that there are a lot of crooked and unethical people running sleep clinics who are primarily interested in their bank balance rather than the patient. I have learned that legislators have made things more crooked with the whole non-competition zone thing and 'Medicare Approval' that is just a kick-back scam. I have learned that trusting these clinics without verifying is a huge mistake - medical people are like all humans and some are good and some suck rocks. I have learned that there are potential side affects that people need to know about and cope with. I have also learned there are some very good and caring people out there. Both the second sleep clinic and the doctor friend offered help when I was in the dark and neither has asked for a penny, for example. I have also learned that there can be a wide variation from the incompetence and poor treatment I got to the skilled and caring treatment that I've seen from the second clinic and other doctors. The trick is in figuring out who the weasels are and who the angels are, right?

[SuperSleeper]

Shows how wrong a guy can be. It turns out I had a heart attack during the titration. Maybe why the weasel doctor at the sleep clinic has cut and run. I go for my stress test tomorrow. My father died under similar circumstances, so I am thrilled. If I survive, I'll get back with you. Thanks for the help.

[SuperSleeper]

So far I am still on the right side of the turf. I got through the stress tests and am awaiting the results and what this all means. I wish the chest discomfort could be stopped, but for now maybe I should just be glad I am still alive. If this works out, perhaps my old reliable GP could be accused of saving my life with his apnea sermon. The bad part is he'll never let me forget it! For my part, I am not sure whether to thank him or cuss him.

However, I did get something else. While I was unable to get the sleep test results from the quack that runs that north Texas sleep clinic I went to, the cardiologist was. Apparently a little arm twisting and a suggestion about unethical behavior did the trick. So I now know I have obstructive sleep apnea with a score of 103 which I am told is high and a pressure of only 7 to resolve it. Interesting that the EKG that came with the sleep test showed the heart attack and no one there said anything about it! The cardiologist said he doesn't think using the CPAP will do harm at this point, but rather some good. As soon as I get results from him (a MUCH more professional and decent person than the sleep clinic hack) I will order the machine and start.

Is this process always this weird or is it just my bad luck?

[SuperSleeper]

I can't speak about the weird process or your possible bad luck, but that clinic sure needs a house cleaning. I am glad that you are still with us after an attack during the titration process.

[SuperSleeper]

Thanks! I'm kinda glad too, but then I have certain prejudices along with my additions to O2 and DHMO to support...

I have heard from some of my own friends and medical people who are appalled by this clinic as well. The thing is, it appears there may well be a portion of this whole specialty that is using the corrupt non-competition zones and political patronage to run fairly large-scale scams. One doctor friend tells me that this corrupt sub-system is preventing a number of his low-income patients from getting treatment for their apnea. Another tells me of how price fixing, market manipulation, and harassing lawsuits are being used by the big two machine suppliers to artificially boost prices. The example that triggered my delving into it was finding out that in my zone the machine I need would cost 80 bucks a month (my co-pay) for 13 months, then another $7000 (my co-pay is about $1400) to purchase after that. I contacted the company that MAKES the machine and found their wholesale price ranges between $400 and $550 depending on quantity. I am having to purchase it outright and bypass Medicare but I am paying less this way than my co-pay would be. My doctor friend struggles to find enough funding so his patients can get these machines since most of his patients do not have their co-pays. Remember that in my case, just the co-pays at the point where the machine is finally purchased add up to $2420. Many of his patients are surviving on $450-$650 a month and are living in charity senior citizens homes.

On the other hand, I have found some VERY competent, professional, and caring people who deal with sleep apnea testing and DME. They also make a living from doing so, but apparently are content to play fair and act responsibly instead of gouging and gaming the system. I will say too that a couple of the really good people I found here through this forum. I want to believe that most people are getting good medical treatment, competent testing, and fair pricing on their equipment. However my own experiences and now researching has put a lot of questions in my mind. I have been in touch with a US Senator I've worked with before about developing some legislation to put a stop to some of the worst abuses. We'll see.

Now, having had a heart attack, almost certainly because of having apnea for so many years without treatment, I find I've made a huge mistake in not taking it seriously. It's obvious that I will do myself a lot of good by getting treatment and using the CPAP, no matter if it might be a bit uncomfortable or inconvenient. I might have saved myself from the heart attack had I been smart enough to figure this out earlier. I should also confess that had I come here and listened and learned I might not have had so much trouble. I HATE it when I'm ignorant and it's worse when I am stupid!

[SuperSleeper]

I suggest reporting the sleep clinic to Medicare. $7000 for a machine after a year of payments is illegal. And BS. If you have a doctor's office you trust--meaning the staff vs the doc him/herself, ask them the procedure or at least how to start. Don't mention the name of the clinic, just ask how to file a complaint through Medicare.

[SuperSleeper]

Interesting that the EKG that came with the sleep test showed the heart attack and no one there said anything about it!

1) Wait a while on this, but maybe you can find a local muckraking news outlet that will make hay over not being told you have a heart attack by the sleep clinic.

That may well be why they didn't want to give you your results.

2) This is a good lesson to us all to not assume all our problems are caused by CPAP or apnea. Even though there are a lot of complications that come from sleep apnea, don't forget that we're just as susceptible to other medical problems as other people.

Doctors make the mistake of blaming everything on apnea as well. Or diabetes, or obesity, or....

[SuperSleeper]

in my zone the machine I need would cost 80 bucks a month (my co-pay) for 13 months, then another $7000 (my co-pay is about $1400) to purchase after that.

Double check on the payment at the end. It's USUALLY 13 months of rental, and then it's yours with no payment. Of course, you insurance may vary.

One of the really nasty things in the medical mafia is that you get a different answer every time you ask.

[SuperSleeper]

deadman. Those figures that you have put out totally confuse me. If you are a Medicare precipitant, then you should be covered by the standard 80/20 configuration. Medicare will pay 80% and You or your supplemental insurance will pay the remaining 20%.

Normally, at least, to my knowledge, the DME (durable medical equipment) people or home health care provider will accept the payment of Medicares 80% plus your or supplemental insurance 20% monthly for 13 months, after which the CPAP ownership is transfer to you. Called "rent to own". You then can continue to rent the equipment from the DME and the DME will provide annual or semi-annual (not sure which it is) maintanance and repairs if needed >OR< you can accept outright ownership and provide your own repairs, if needed.

Please do your own "do diligence" on this and on the payments that you have posted. Something is terrible wrong with those purchase figures, and the Medicare info that you have.

[SuperSleeper]

The figures are accurate. It took me almost a week to get them and verify them. Yes, I do understand that I pay 20% and that is what I refer to as my co-pay. That's right isn't it? The company with the huge price said that the rental was different than the purchase and that the rental was needed to convince Medicare I was compliant and benefiting from use. The purchase was after I qualified. No rent-to-own was mentioned at all.

The forum rules forbid mentioning names so I can't do that, but one of the rip-offs was on the list here. It was interesting that when I called and told them I was in different zones, I was given different pricing. One other did the same thing only was smart enough to ask for the Medicare number first. Your number will allow them to 'make sure you are covered' but really is used to find out which zone you are in. This was discovered when I tried some time back to get a scooter when I was not able to get around. The price advertised nationally was not available to me because I was in the wrong zone. This time I got around that by using the medicare numbers of a couple friends in different parts of the country to check pricing. Then I found that different zones for that company too also meant different cost. Finally another company, also on your list here, confirmed that these practices were in fact being done and that it was a major impediment to doing honest business. In that case, one of the two big manufacturers has actually sued to prevent the owner from selling for less than the price-fixed zone prices and has even refused to sell his company machines unless he agreed to sell them for at least three times the cost - their fixed list price.

Again, I agree these prices represent the extremes, but just the fact that if you live in a small state like South Dakota means that you pay substantially more than a larger state is unreasonable. (Of course in the western end of the state there are NO advantage plans except one that adds part D either.) The idea that Medicare just goes along with whatever pricing they are presented with "As long as it is the prevailing local price" according to a Medicare staffer, seems to promote gouging, doesn't it? This is much like the $16 aspirin we've all heard of. Or, again from personal experience, the wrist brace I got when I had surgery last year in Charlotte. In that case the brace was sold by the manufacturer on their own site for $32. The exact same item form the same source sells for $15 at Wal-Mart. My co-pay on it (20% of the amount charged to Medicare) was $49. Or the block of foam rubber that I was given to keep my arm elevated for a couple days after surgery - it was over $200 on the invoice. You can do the math there.

Anyway, JudgeMental, I mean no disrespect at all and am not picking an argument, but making the point that many do not know these things are going on because people tend to stay in one place, especially when dealing with medical problems and don't realize that this zone thing is a reality. The rules, the policies, and the pricing all vary from place to place so some are treated fairly well and others not so much. The fact that in the process of going through multiple medical repairs I have been in 21 states in the last two years doesn't help, I know. But it happens and people should be aware that this political patronage system that appears to be in place, along with the non-compete zones, cost all of us and create a lot of Medicare waste. I'd rather see doctors paid better and patients treated better than have a few crooks scam the system. And you also have to wonder how Medicare can ask for and get the $10,000 per year kick-back that is required so a DME can bill Medicare. Since when is this kind of thing allowed anywhere else in legitimate business?