CPAPtalk.com

DynoDad wrote:I take your point, but if my heart is still beating and my brain is still getting oxygen then I'm pretty much happy. It might only be $50 or $100 per machine, but multiply that by the number of people using them and it soon adds up to a huge amount of money, and probably only a tiny subset of people would ever look at the data anyway. Because medical care is centrally funded by the state there isn't the option to even pay the difference to get the data machine, you would have to buy it outright - on that basis I'm happy with the $50 oximeter.

It's really very simple. Here's what happens if you have a data capable machine and a competent doctor.

You get a CPAP.
You have problems of some kind.
You complain to your doctor.
You mail in your card to the doctor. Doctor looks at your CPAP data and makes adjustments without the cost of an office visit.
Or the doctor says your CPAP data looks good, and you're reassured, or you go looking for the real cause of your problems.
You mail your data card to the doctor periodically, and he can verify your treatment is working well or adjust as needed.


Here's what happens with a non-data capable CPAP.

You get the CPAP.
You have problems. You go to the doctor for an expensive office visit.
He shrugs his shoulders and says he has no idea what's going on.
Maybe he ups your pressure blindly.
You tell him you feel better, but you're actually still having apneas with associated health problems.
Repeat the unhelpful and expensive office visit several times.
Run expensive tests looking for other causes of the problems that proper CPAP would fix.
You have to have periodic in-lab sleep tests to check on your therapy, but you don't sleep well in the lab, and conditions are different than your normal sleeping environment.
You blame other medical problems on apnea because you don't have data that would show the CPAP is working. Those problems go undiagnosed and untreated.
You get less effective CPAP therapy or quit entirely with increased risk of expensive strokes, heart disease, other other health problems.

Treating apnea without a data capable CPAP machine is like treating a heart attack patient without bothering to have him bother to check his blood pressure between office visits.

Unless you're hoping the patient dies off before he runs up too many medical bills, there's no excuse for the insurance company or government to not insist on fully data capable CPAP machines and periodic reading of the data.

When I was diagnosed with sleep apnea, the DME gave me a RemSTAR basic machine with only blower hours for data. They told me that's what everyone gets and that its all there is. I felt like I was getting a special deal because they gave me the heated humidifier attachment because my sleep doc wrote it on his prescription.

The machine brought some relief, but some days seemed horrible while others seemed better... I couldn't understand why I had such a variety of results. After five years, and not hearing back from the DME or Doctor, I reached out to the doctor and told him that I thought I needed another sleep study because cpap didn't seem to be helping me as much as I felt it should. He made me come in to see him and after collecting his money, wrote a prescription for a 30 day rental for a auto machine to figure out what my pressure setting should be. This was my first time hearing that such a machine existed. I thought the only way to figure out your pressure was to pay thousands of dollars for a sleep study which is why I avoided that for so long.

I got the auto and they set it for a 6-20 pressure range which was absolutely terrible because the starting pressure was much lower than what I had been using. I felt like I was struggling to get air. Eventually, the machine would realize that I couldn't breathe and it would increase the pressure. After enduring those terrible settings for the 30 days, I learned that my original pressure was incorrect and it needed to be increased several units.

During that time, I started learning more about cpap machines and how there were data capable ones out there and everything, but when I went back to my old machine, it broke. It just started squealing and something was terribly wrong. So I needed a new machine FAST. So I told the DME I would only buy from them if they could supply me with a machine that has data reporting. I was tired of being in the dark with my therapy. It had not crossed my mind that an auto was actually something that patients could own. I thought it was a "only when the doctor allows you to use it temporarily" sort of thing.

Anyway, they gave me the middle grade PR System one with data, but no auto. Thats about the same time I started stumbling into this forum and started learning more about all the options out there. Several months passed and I started reviewing my data and I noticed that my results varied greatly from night to night. It became apparent to me that my therapy could really benefit from a machine that watched over me at night and adjusted on the fly to help with whatever my current conditions are. I realized that no matter how pro-active I was manipulating the pressure of my machine, I couldnt predict what would happen while I was sleeping and what pressure I would need for that night to achieve optimal health.

It was too late to do anything about the machine I already got through the DME. So I went online and found the Auto version for a fantastic price. In fact, the price of buying the auto cost me LESS than my portion of the insurance co-pay for my non auto from the DME. So it would have saved me money to buy it out of pocket online rather than using the DME with insurance...

Anyway, The point of all this? No, I'm not happy with compliance only data. I'm furious that I was in the dark about better machines AND better therapy for five years. FIVE YEARS! Why would no one tell me about the better options out there? I really resent not knowing sooner. I felt like I was kept in the dark intentionally. You wouldn't tell a diabetic to just stick the same amount of insulin in their body every day without checking to see how their blood sugars are reacting. It blows my mind that anyone would think that static, un-monitored treatment for sleep apnea would be optimal or even satisfactory for anyone.

DATA IS NECESSARY FOR GOOD PROPER TREATMENT. IT IS NOT A LUXURY OR DELUXE FEATURE... you need it to achieve the best health and best results.

Sorry... that was a bit long. Thanks for your time.

jedimark wrote:

DynoDad wrote:I take your point, but if my heart is still beating and my brain is still getting oxygen then I'm pretty much happy. It might only be $50 or $100 per machine, but multiply that by the number of people using them and it soon adds up to a huge amount of money, and probably only a tiny subset of people would ever look at the data anyway. Because medical care is centrally funded by the state there isn't the option to even pay the difference to get the data machine, you would have to buy it outright - on that basis I'm happy with the $50 oximeter.

Unfortunately, Oximeters on there own are not even remotely accurate.. (Edit: I'm referring to when they are used along with CPAP, not on their own.. They are quite useful identifying initial issues)

I've compared a lot of CPAP flow data against oximetry data, and have seen nothing to indicate oximetry alone (without cpap data) is sufficient for an average user to identify problems.

I broadly agree with you, a $50 oximeter is not necessarily going to be accurate, however what it does show well is the trend. If the graph is fairly flat then you can infer than you're getting enough oxygen, if there are troughs then you can assume you have a problem. No, it won't tell you what the problem is, but it's a long way better than nothing. I'm not so interested in monitoring the machine, actually I don't care what it's doing, I want to know that my body is getting enough oxygen. Between that and how tired I feel I reckon it's a pretty good indication of the success or otherwise of the therapy. And that's what really counts, for me at least. when I was learning to use CPAP the data (thanks to Sleepyhead) was invaluable in showing me what was happening with leaks and so on and helped me work out how to properly position the mask and so on. If I didn't have access to the data it would have been a much harder process. Now I've got it working the data is less important to me. I'd still like to have it, but I can understand why the NHS doesn't want to pay for it, they don't have a bottomless pit of money any more than I do, and data isn't going to make the treatment any more effective than it is for me now.

archangle wrote:

DynoDad wrote:I take your point, but if my heart is still beating and my brain is still getting oxygen then I'm pretty much happy. It might only be $50 or $100 per machine, but multiply that by the number of people using them and it soon adds up to a huge amount of money, and probably only a tiny subset of people would ever look at the data anyway. Because medical care is centrally funded by the state there isn't the option to even pay the difference to get the data machine, you would have to buy it outright - on that basis I'm happy with the $50 oximeter.

It's really very simple. Here's what happens if you have a data capable machine and a competent doctor.

You get a CPAP.
You have problems of some kind.
You complain to your doctor.
You mail in your card to the doctor. Doctor looks at your CPAP data and makes adjustments without the cost of an office visit.
Or the doctor says your CPAP data looks good, and you're reassured, or you go looking for the real cause of your problems.
You mail your data card to the doctor periodically, and he can verify your treatment is working well or adjust as needed.


Here's what happens with a non-data capable CPAP.

You get the CPAP.
You have problems. You go to the doctor for an expensive office visit.
He shrugs his shoulders and says he has no idea what's going on.
Maybe he ups your pressure blindly.
You tell him you feel better, but you're actually still having apneas with associated health problems.
Repeat the unhelpful and expensive office visit several times.
Run expensive tests looking for other causes of the problems that proper CPAP would fix.
You have to have periodic in-lab sleep tests to check on your therapy, but you don't sleep well in the lab, and conditions are different than your normal sleeping environment.
You blame other medical problems on apnea because you don't have data that would show the CPAP is working. Those problems go undiagnosed and untreated.
You get less effective CPAP therapy or quit entirely with increased risk of expensive strokes, heart disease, other other health problems.

Treating apnea without a data capable CPAP machine is like treating a heart attack patient without bothering to have him bother to check his blood pressure between office visits.

Unless you're hoping the patient dies off before he runs up too many medical bills, there's no excuse for the insurance company or government to not insist on fully data capable CPAP machines and periodic reading of the data.

Gosh. Makes me *so* glad I live in the UK where we have free healthcare for everyone and don't have to worry about dealing with insurance companies and medical bills and so on. Don't fancy the sound of a sleep lab either, very glad my hospital does sleep tests at home, in your own bed.

Maybe you should move to the UK, your system sounds horrible.

I'm not so interested in monitoring the machine, actually I don't care what it's doing, I want to know that my body is getting enough oxygen. Between that and how tired I feel I reckon it's a pretty good indication of the success or otherwise of the therapy.

If getting enough oxygen was the only problem, we could all just go on O2 and not Cpap. The damage to your body is caused by more than just the drop in O2. Some people have normal oxygenation at a sleep study but still have damage caused by the other effects of sleep apnea. There are changes in pressure in the chest cavity, changes in body chemistry, etc. that can happen with sleep apnea. I want to know if I am actually treating every aspect of this disease and not just the desaturations. Give me data or (possibly) give me death!

PS: If your system gave you the S9 Escape, I'll take my system even if it costs more.

If I could get an S9 escape auto for under 50 bucks, it could be my back up--otherwise: fuggeddaboudit!

teknomom wrote:If getting enough oxygen was the only problem, we could all just go on O2 and not Cpap. The damage to your body is caused by more than just the drop in O2. Some people have normal oxygenation at a sleep study but still have damage caused by the other effects of sleep apnea.

That's a good point, but in my case O2 sat dropping was my biggest symptom as my apnoeas tended to be long duration. If my O2 is good it's a strong indicator that all is well for me, for other people that may not be a valid assumption to make but it is in my case.

This argument could go round and round, and while I understand the reasons (cost vs benefit) why they wouldn't give data machines to everyone it ought to be considered on a case-by-case basis, and if it's justified then one should be issued.

The point for OSA-diagnosed patients is that you weren't just diagnosed with "overnight desaturations." You were diagnosed with a sleep disorder. Brief or partial obstructions that do not affect sustained O2 can still destroy sleep architecture and affect health in a profound but insidious way. Bad sleep can kill and do so completely independent of O2 saturation.

So it would be a shame if someone thought that their using a pulse-ox were telling them much about how successfully their sleep disorder was being treated. For most, a pulse-ox won't indicate that your pressure is too low; it will only tell you if your pressure is WAAAAAAAY too low. That's why sustained O2 readings fail miserably as a screening tool. Too many people with the sleep-breathing disorder don't get caught by that method.

On the other hand, if you have NO sleepiness and NO tiredness, THAT can tell you a little something about your sleep. Perhaps not as detailed as AHI info, but it is something. Naturally some with untreated or undertreated OSA don't feel how tired or sleepy they really are, so it isn't a perfect method either. But without AHI data, I would put more stock into how I felt over time at various pressures than I would put into any pulse-ox readings, no matter how reassuring those readings seemed to me to be.

But hey, that's just me.

There is a lot of discussion about oxygen desaturation, but keep in mind that a pulse oximeter also measures heart performance.

The heart rate changes with arousal as well as with desaturations. Not many people talk about pulse events. They may be as important as desaturations.

Pulse oximeter data, especially when collected over a period of time, can be very informative. It doesn't replace a proper sleep study, but there is a lot of information there. Oxygen desaturations are only one part of that information.

DynoDad wrote:Gosh. Makes me *so* glad I live in the UK where we have free healthcare for everyone and don't have to worry about dealing with insurance companies and medical bills and so on. Don't fancy the sound of a sleep lab either, very glad my hospital does sleep tests at home, in your own bed.

Maybe you should move to the UK, your system sounds horrible.

Our system IS bad, but your system gives you an S9 Escape dataless machine with no choice and you miss out on the health benefits of having your apnea monitored every night. Then you pay the extra taxes involved from this penny wise and pound foolish policy. Truly sad because the patients and taxpayers would greatly benefit from fully data capable machines and long term in-home monitoring.

Does the UK restrict benefits on recent immigrants or some such? Someone told me that if they wanted to emigrate from the US to Canada, they had to pay some large lump sum in order to pay for accumulated health/retirement benefits.

Yes, our system IS bad.

archangle wrote:Does the UK restrict benefits on recent immigrants or some such? Someone told me that if they wanted to emigrate from the US to Canada, they had to pay some large lump sum in order to pay for accumulated health/retirement benefits.

It's been 24 years now since, but we lived in England for a year. During that time, as visitors, we received medical care at no cost from the Brit medical system. I even got my first dental crown for no charge. Didn't even have to wait more than a few days for the app't. But, I'm sure things have changed a lot since then.

It's changed a bit, you now pay part of the cost of dental treatment, but it's still heavily subsidised by the state. Medical care (doctors, hospitals, operations) is all free, as are eye tests and glasses (basic frames anyway). Here in Scotland we also have free prescriptions, in England they pay about £6 (I think, about $9) for prescription drugs.

Overall I think it's a better system than the US, there you are dealing with insurance companies whose sole aim is to maximise their profits in the short term by spending as little as possible. In the UK the Health Service doesn't have unlimited funds of course, but there isn't quite the same link between cost and care (i.e. this operation / treatment would be good but it's really expensive so let's not do it). Cost is becoming more of a factor however, but for the most part profit isnt a factor and at least we don't have to deal with insurance companies

Not sure about immigration costs, certainly for people within the EU there's no cost - we've got a massive population of Poles and other Eastern Europeans who have arrived in the last decade or so and get all the benefits. I expect some of them are on CPAP too .... (thought I'd best keep to the thread )

DynoDad wrote:
That's a good point, but in my case O2 sat dropping was my biggest symptom as my apnoeas tended to be long duration.

No, your biggest symptom was long duration apneas and an AHI of 70 (as it shows in your equipment profile). Seeing that data from a CPAP machine, desats could easily have been predicted.

If you had a data-capable machine you would learn these things and be able to reduce the damaging events (short or long).

You will have big problems troubleshooting a leaky mask and reducing events with a pulse-oximeter.

Would I be happy with a compliance only machine? No, I love being able to study my data

Could I make due with one? Sure, no problem, as long as it's an automatic machine with exhalation relief and I get to use my pulseoximeter and Zeo.

So if you know of a cheap S9 Escape Auto, drop me a line

Burkebang wrote:Would I be happy with a compliance only machine? No, I love being able to study my data

Could I make due with one? Sure, no problem, as long as it's an automatic machine with exhalation relief and I get to use my pulseoximeter and Zeo.

So if you know of a cheap S9 Escape Auto, drop me a line

I just noticed you have an Intellipap.. I've been working on hacking the flow waveform out for your machine