Doctors and The Things They Tell Us

[bailachel]

Thanks for your reply Wulfman. I can see where that would be a consideration. Luckily for me, I never feel the pulses. The PR1 sends pulses even on straight CPAP. My doctor said that it didn't until I showed him a waveform report from my straight CPAP days that showed pulses. I believe that it uses them to test whether an event is central or obstructive.

[Wulfman]

Thanks for your reply Wulfman. I can see where that would be a consideration. Luckily for me, I never feel the pulses. The PR1 sends pulses even on straight CPAP. My doctor said that it didn't until I showed him a waveform report from my straight CPAP days that showed pulses. I believe that it uses them to test whether an event is central or obstructive.

I wasn't talking about the PR1 pulses.....those are a new concept to that particular model of machine. I'm talking about pressure changes and APAP pressure ranges in general.


Den

[bailachel]

I don't notice them at all and wouldn't even know that it was happening if I didn't see the data on the reports.

[Wulfman]

I don't notice them at all and wouldn't even know that it was happening if I didn't see the data on the reports.

That's what most people say, but then at some point they complain that they aren't feeling rested or that their therapy isn't working. When they switch to straight pressure, they feel much better.


Den

[bailachel]

I do understand what you are saying, and how it answers my question as to what I was missing. However, since my AHI ranged from 0.3 to 0.7 for the last 2 months and I feel rested, I am reluctant to make changes to something that seems to be working so well for me. Even the doctor, despite his general feelings about APAP, said that everything looked good and he did not ask me to change it back.

Thank you for your input. The info about the pressure changes waking people up was helpful in understanding my doctors comment.

[jonquiljo]

When I asked for a machine with data capability the sleep lab RN (I never actually saw the doctor) kept insisting that the Remstar Plus was the best machine on the market and would give the doctor what he needed. I tried to explain the difference between the Plus and the Pro but she got very irritated. At first I tjhought she was just dim. Now I believe it is a control issue.

It's part control and part what they've been primed to tell you. The sleep lab probably likes to know more about what's going on than the patient does. They probably hate informed patients as they (the sleep lab staff) do not feel as important.

They've also probably had it hammered into them that certain machines, types, etc - are what they are supposed to like - i.e. - ignore requests for more expensive data capability and APAPs. They are told and conditioned that way by the MDs that run the place. The MD's that run the place are probably keenly aware of their "provider status" and not to rock the boat. I expect they are constantly told to recommend the cheaper and older machines to save the insurers money. I bet if any of them used machines and you went into their house, you'd see the latest and greatest.

I guess what I am saying is that the insurance industry dictates more than people realize. They dictate a great deal of medicine these days. Consequently, the providers (in this case sleep lab staff) feel a bit impotent and therefore tend to want to be condescending and controlling - after all - that's what the insurers do to them.

When Congress passed health care reform, I thought they would address some of these issues. I contend that these issues are in large part responsible for our poor medical outcomes relative to other developed nations. We do things like go out of our way to deny sleep machines to people that need it only to pick up costs of more serious illnesses 10 or 20 years later as it has been untreated. We therefore have poorer treatment results and higher costs as insurers are thinking about their bottom lines NOW - not 10 years in the future. If they did think into the future, they would realize that they would save money overall by taking care of problems as they emerge.

Our medical system is short sighted because it is cost driven in the short term. Medicine takes a smaller and smaller role each year. All this legislation and we do nothing to fix the basic problems. Congress backed away from fixing many basic problems and just went about spending more money. Instead we will just spend more money to give more flawed care to more people. Trying to insist in 2010 that a REMstar plus is the best machine on the market is a perfect example of that. The only better outcome in their model would be that you don't get a machine at all. And I am sure lots of people end up in that scenario too - you just don't meet them here because they don't even get past the first hurdle.

[DoriC]

As the observer of my husband's therapy I can tell you that he is one of those sensitive to pressure changes. When I set machine to auto at a very narrow range of 10.5-13cms he seems more restless although he doesn't awaken. When I check the screen during that period of restlessness I'll notice his pressure has risen to 12 or sometimes 13. His AHIs are low in both modes but he seems to sleep better and appears more rested on a steady pressure of 12cms without the fluctuations.

[sleepycarol]

I talked with him again today. He was curious about somethings and since it was hectic I didn't really get a chance to talk to him, but found time to talk with his wife (we had faculty meetings today and so in between meetings was able to do so).

She was taken aback about the doctor's "words of wisdom". I agreed to let him use my M series auto set to his pressure (12) for a week and we would down load the results and they could have the print out for their records, etc.

I will take the machine in on Monday since we are in opposite directions from the school.

[Wulfman]

I talked with him again today. He was curious about somethings and since it was hectic I didn't really get a chance to talk to him, but found time to talk with his wife (we had faculty meetings today and so in between meetings was able to do so).

She was taken aback about the doctor's "words of wisdom". I agreed to let him use my M series auto set to his pressure (12) for a week and we would down load the results and they could have the print out for their records, etc.

I will take the machine in on Monday since we are in opposite directions from the school.

I don't recall reading that you had discussed the type of mask he's using, but from the sounds of things, I'd guess that he's using a nasal mask and is leaking a significant amount of his therapy air out his mouth.
It'll be interesting to see what his download shows.

Den

[sleepycarol]

He is a mouth breather and uses a full face mask Den.

Said he tried a nasal mask when first starting and his wife told him about his mouth breathing and so went back to his full face mask. He gets a new mask as per insurance guidelines so his was just replaced this summer. Said he has switched to the Liberty or the Hybrid (from his description of it) but didn't know which one. I have wondered it he is getting the pillows stable and properly placed.

[suzzy]

This is an informative thread. Now I think I understand why my experience has been what I consider sorely lacking with the sleep center I've been to, which is part of a prominent hospital in a high income area in Southern California. The first time I went in and was diagnosed, back in 2005 I didn't know anything about sleep apnea and they only told me the bare minimum after my sleep study. I got an S8 Escape, which I'm not complaining about, but no one said anything about data tracking or following up on how I was doing. It was kind of like, well if you have any problems, come on back. But I was not told that I should be followed at all. At that time I had a PPO plan.

Fast forward to date and I went in recently asking for titration and stating concern about the coughing that was waking me up several times each night. So I mentioned to the doctor that I'd like to be able to track my sleep data with software and he said you have to have a certain kind of machine. So I told him my machine had a place in the back to put a card in. He went out and got a data card for me, and told me to go home and download the data and bring it back in for them to read it. Ok, so I did that. Now it's been three days since then and I've left two messages for the doctor to call me regarding the data and haven't heard a thing. I'm in a HMO plan now. And I'm on Cobra which will be ending at the end of this month, which I have told the doctor and the staff every time I've spoken to any of them. You know, time is of the essence here.

I asked for a copy of my sleep study and was given several pages, but no explanation at all. I made a point to tell the doctor that I wanted to learn more about my sleep apnea, etc. but he didn't seem to want to help make that happen. I feel that I've basically received the bare minimum of care, if that.

[Sillyme]

was diagnosed, back in 2005. . . . I got an S8 Escape.

Don't know what your co-pay and out-of-pocket are, but if you are about to lose coverage I would try to get a new machine and all the supplies you can. My plan covers a new machine every 5 years. If you can get a data capable APAP and educate yourself, you will have a lot of flexability without having to rely on a doctor. And you will have a back-up machine.

[Emilia]

Hi Suzzy...... Your S8 Escape does not collect your therapy data...it only will show compliance data. There is a big difference!! Compliance data simply shows the hours used and # of days. It allows your insurance to know that you are using the equipment they are paying for. So, that SD card isn't going to provide you with any info about the progress of your therapy!!

To get the type of full detailed data of your therapy, you would need and Elite or AutoSet S series ResMed machine (in your brand line). Once your Cobra is done, what are you going to do for a machine? Will you need to turn in the S8?

If you can post your sleep study results for us, we may be able to help you understand them. If you are computer literate enough to scan, block out your personal info, upload to a image sharing site like Picasa or Flickr and then link the images to here, that would be great. If not, just give us the details.... Hours slept; AI; HI; AHI; recommended pressure; and results for Centrals, Mixed, leg movements, etc.

If you are going to be without insurance and need to purchase a machine out of pocket, you might want to look at the machine I use. It is an excellent one with full data capability and much less expensive than some others on the market. It is also the best selling auto on our host's site.

[Sillyme]

If you are going to be without insurance and need to purchase a machine out of pocket

Don't get stuck buying a rental machine. I just got a Quattro mask from DME. Without insurance the cost is $312. Online the same mask is $170 something. At least try for a new mask from insurance.

[suzzy]

Emilia, that's what I was wondering, if the data card only shows compliance. Sheesh, what the heck is that doctor thinking? I can probably do a scan and post on a photo sharing website, but I can't do it right away. I say I can because I have scanned before and I have used a photo sharing service before. However, when I tried to post a scan I had troubles due to the scan not being a photo. So there may be something I'm missing here about how to go about this.

As far as getting a new machine goes, this HMO is the stingiest and I doubt if they would let me get a new machine if I have a working one now, but I can ask the doctor if he ever calls me back. If they did allow a machine, it probably wouldn't be a data capable one either.

I do have two back up machines, both basically new. One I got when I had Kaiser a couple years ago; a RemStar M Series with CFlex, and another S8 Escape. Believe it or not, I found the second S8 in Goodwill for $14.95 and it had only a few hours on it, so that's the one I'm using currently. My backup S8 Escape is basically new from ResMed because my original machine was recalled and they sent me a new one, which I have not used. I was thinking about putting the RemStar on the auction site, because the one time I tried it, I did not care for the fluctuating pressure.

I just got a new nasal mask, the Swift FX for Her, and I have one new Swift Mirage II, which is what I was using before the FX for Her and I was ok with that, so I think I'm good for supplies. I don't know what I will do for medical coverage when the Cobra is gone, except try to stay out of the doctor's office as much as possible. I am 59 and pretty much up a creek regarding coverage.