ResMed Tech Support and DME, Good Grief

[Marnid2014]

So, interesting things have been going on. I wanted to get your input and see if you all come to the same conclusion. I have attached my stats.

My DME guy is clueless. While watching my daily AHI and ratio of leaks, I found out that my leak rate has been pretty high. I called ResMed and told them that the ResMed software was showing the following:

Pressure 8
Median 8.4
95th % 28.8
Maximum 33.6
AHI 0.5

Night before

Median 10.8
95% 34.8
Maximum 38.4
AHI 0.2

First the technical support at ResMed said, "How did you get hold of our software, you are not supposed to have it.
I replied, I downloaded it and excuse me, but it's my body and I want to be proactive in my therapy and IF I did not have it I wouldn't know about these leaks in the first place, I would merrily go along thinking that when I look at the machine in the morning and it has a happy face and say's AHI less than 5 I am good to go. She replies, "I get your point" and your leak rate is high, because for 95% of the night you were at 28% which skews the AHI. It is a false reading.

I call the DME and said, something must be done, I can't figure out where the leak is coming from. They know I am really angry now because I am getting such flack about even having the software. I expect a supervisor to come out and chase this down.

Last night I am looking at my previous stats from a month ago, and I see where when they have me on pressure 17, my leak rate is 100%. Then I noticed that they bring my machine down to 6 and my leak rate is about 10.2, one night it's 4.0, and on and on. My AHI is very low during these days. THEN I see where they put the machine on 8 and lo and behold my leak rate goes back up to above 30. Same mask.

I am claustrophobic so I hear about the the new P10 mask and they bring it to me. It's wonderful, low profile, and I am in heaven HOWEVER my leak rate is up above the red line again for 95% above 30 or so.

All this time, I am taping my mouth shut, so I know it is not mouth breathing.

Today the supervisor comes to look and inspect the machine and hose etc. No issues found. I tell him about the software and he say's he can't change the RX back to 6 without docs permission although I tell him, I HAVE AN RX that say's I can be changed from 6 to 12 max and then if above that the doc wants another study. He still won't change it, even though it would have been only a phone call to home base to verify that the RX is really on file. I figure it's probably because they get paid for another service call grrrrr.

So end result is he gives me yet ANOTHER mask to try, this one being the nano, self sealing. So I am going to try it tonight on pressure 8 and then call them tomorrow after looking at my stats in the morning and then make them come out AGAIN and put the pressure down to 6, put on the p10 and see if that works with less pressure. The nano, I can tell is going to drive me nuts with my clostrophobia, but I will give it a shot. He say's that I cannot change my own pressure that it is illegal to do so and Medicare will take my machine away.

Question, from looking at all this what are your thoughts, you all IMO are MUCH smarter than the DME, I am thinking this is all due to too much pressure.????? Also, can anyone tell me how to get the graphs to display in the RedMed, I can only get overviews.

Thanks

[Bama Rambler]

I think you're looking at this the wrong way. It's not higher pressure causing your leaks. You just haven't gotten the right mask or haven't gotten the mask you have to seal properly. A lot of people have much higher pressures than yours and they get their masks to seal correctly. You should be able to get a seal regardless of the pressure. You may have to get a different mask and you may also have to train yourself not to be anxious about wearing the mask.

[PaytonA]

Higher pressures will yield more propensity to leak but Bama Rambler is right. You need to find the right mask

[justMongo]

If I ever show results to my DME, I will use open source Sleepyhead.
As for the anything a DME says that sounds like a threat (like taking your machine away.)
That's known as FUD. (Fear Uncertainty and Doubt) Most DME's are the Bureau of FUD because they want to control their turf.

ResScan graphs are viewed in "Review" -- then "Detailed Data."

[Jchris]

Hi All !

I have a few questions that I hope you will be able to help me answer.

1. Although my AHI levels are usually <5, my hypopnea events are always greater than my apnea events. Is this normal ? (I have complex sleep apnea and use Sleepyhead software) 2. Are there any risks when there are only hypopnea events ? 3. Is there a direct relationship between the number of hypopneas and SO2 levels ?
4. What immediate risks should be addressed as seen on the reports ?

Thank you for your help. This is one great group of people !!
Jchris

[Marnid2014]

I think you're looking at this the wrong way. It's not higher pressure causing your leaks. You just haven't gotten the right mask or haven't gotten the mask you have to seal properly. A lot of people have much higher pressures than yours and they get their masks to seal correctly. You should be able to get a seal regardless of the pressure. You may have to get a different mask and you may also have to train yourself not to be anxious about wearing the mask.

I have a very small face so these masks are very hard to fit me. The nano is coming up to my eyes and almost to my lips, so I am not sure that this will work. I think the point was that my first mask was giving me the scores that were within range of even below normal leaks, like 7 and raising that pressure did make those leaks MUCH worse. I just think I am going to have to go back to that pressure and see if I can see it go back down. If that happens, then I have the right mask and pressure as long as my AHI is low as well.

What really got to me was the fact that the ResMed people were so upset that I even have the software and the DME did not like it as well.

[Bama Rambler]

Keep looking for the right mask. Don't get discouraged. There are some masks that even come in XS sizes. You may need one of those.

[retired_guy]

I think you're looking at this the wrong way. It's not higher pressure causing your leaks. You just haven't gotten the right mask or haven't gotten the mask you have to seal properly. A lot of people have much higher pressures than yours and they get their masks to seal correctly. You should be able to get a seal regardless of the pressure. You may have to get a different mask and you may also have to train yourself not to be anxious about wearing the mask.

I have a very small face so these masks are very hard to fit me. The nano is coming up to my eyes and almost to my lips, so I am not sure that this will work. I think the point was that my first mask was giving me the scores that were within range of even below normal leaks, like 7 and raising that pressure did make those leaks MUCH worse. I just think I am going to have to go back to that pressure and see if I can see it go back down. If that happens, then I have the right mask and pressure as long as my AHI is low as well.

What really got to me was the fact that the ResMed people were so upset that I even have the software and the DME did not like it as well.

The software is a proprietary product. It is not provided by Resmed for individual use. They sell it for big bucks to clinics and such. We have the ability to download a copy that was made available to us. If you want to remain "legal" then download and use the Sleepyhead software available on this site. I think it's actually a better product anyhow.

[becker44a]

What really got to me was the fact that the ResMed people were so upset that I even have the software and the DME did not like it as well.

I had a similar experience with a Respiratory Tech at my DME. She started to lecture me about changing pressure . . . "You'r not even supposed to know how to do that." Started acting like the pressure settings were handed down on stone tablets. This was ludicrous, because she was the one who had earlier requested my Doctor (GP not Sleep Sp) for an increase, and he just changed it from 10 - 14, up to 10 - 20. And then she put in the change.

This is just a turf war, and they want you to be ignorant, because then you are easier to control.

By the way, you may want to complete your profile, so people can help you better (currently indicates you'r not using software).

Good luck and stand your ground.

[robysue]

Marnid,

First things first: Let's talk about those leaks of yours. I think that you may be making a mountain out of a mole hill.

You write:

I found out that my leak rate has been pretty high. I called ResMed and told them that the ResMed software was showing the following:

Pressure 8
Median 8.4
95th % 28.8
Maximum 33.6
AHI 0.5

Night before

Median 10.8
95% 34.8
Maximum 38.4
AHI 0.2

and

IF I did not have it I wouldn't know about these leaks in the first place, I would merrily go along thinking that when I look at the machine in the morning and it has a happy face and say's AHI less than 5 I am good to go. She replies, "I get your point" and your leak rate is high, because for 95% of the night you were at 28% which skews the AHI. It is a false reading.

and

I am claustrophobic so I hear about the the new P10 mask and they bring it to me. It's wonderful, low profile, and I am in heaven HOWEVER my leak rate is up above the red line again for 95% above 30 or so.

You and the people at Resmed and the DME who are trying to help you all have some serious misconceptions about the leak numbers gathered by your machine and it's time to work on setting that straight.

First: The leak rate is measured in liters per minute, not %'s of anything. The Resmed machines report only the excess, unexpected leaks, and so an "ideal" leak rate would be 0.0 L/min all night long. Resmed also defines an official Large Leak as any leak that is AT or ABOVE 24 L/min. But there's more to evaluating how bad a Large Leak is than just its size---the length of time you spend above the red line at 24 L/min is also important. A few short lived Large Leaks here and there are usually nothing to worry about; long periods of time where the leak rate is AT or ABOVE 24 L/min are what you need to worry about.

It's also important to understand that most people don't have ideal leak graphs, and, quite frankly once your leaks are "good enough" there's little point in trying to eliminate the last little bit of leaking if the leaks are not waking you up.

Next: The median and 95% leak rate numbers are statistical numbers with very specific meanings. For a lot more detail on the statistical meaning of these numbers and how they're calculated, see my blog entry Average, Median, 95% numbers: A guide to those who don't remember their introductory stats.

Recall that on one night's data, the leak rates in Resmed were reported as:

Median 8.4
95th % 28.8
Maximum 33.6

A median leak rate of 8.4 L/min means that for 50% of the night your leak rate was AT or BELOW 8.4 L/min. And for 50% of the night your leak rate was AT or ABOVE 8.4 L/min. Since 8.4 is well less than the RedLine at 24 L/min, we can conclude that for at least half of the night, your leaks were small enough for the machine to compensate for.

A 95% leak rate of 28.8 L/min means that for 95% of the night your leak rate was AT or BELOW 28.8 L/min. And for 5% of the night your leak rate was AT or ABOVE 28.8 L/min. The 95% of the night your leaks were AT or BELOW 28.8 L/min includes the 50% of the night that your leak rate was AT or BELOW 8.4 L/min. So we now know this:

• For 50% of the night your leaks were AT or BELOW 8.4 L/min.
  
• For 45% of the night your leaks were possibly above 8.4, but they were also AT or BELOW 28.8 L/min.
  
• For 5% of the night your leaks were AT or ABOVE 28.8 L/min.

Since your 95% leak rate is not much above the RedLine at 24 L/min, it is reasonable to conclude that for most of the night your leaks were actually below 24 L/min. We then add in the fact that you report seeing Mr. Green Smiley Face in the morning. Mr. Smiley Face shows up when your so-called 70% leak rate is BELOW 24 L/min. (In other words, the Resmed engineers are only concerned about Large Leaks being long enough to adversely affect therapy if the Large Leaks last 30% or more of the night.) Since Mr. Green Smiley Face showed up, we know that for 70% of the night your leaks were AT or BELOW 24 L/min and this includes the 50% of the night when your leaks were AT or BELOW 8.4 L/min. So we now know:

• For 50% of the night your leaks were AT or BELOW 8.4 L/min.
  
• For 20% of the night your leaks were possibly above 8.4, but they were also BELOW 24 L/min since Mr. Green Smiley showed up.
  
• for 25% of the night your leaks were possibly above 24 L/min, but they were also AT or BELOW 28.8 L/min
  
• For 5% of the night your leaks were AT or ABOVE 28.8 L/min.

So we know for sure that your leaks were LOW enough to not be official Large Leaks for at least 70% of the night, and again, because the 95% leak rate is only 28.8 L/min, it's quite possible that official Large Leaks made up much less than 30% of the night.

In other words, the upshot of all this is: Your leak rate numbers are not as bad as you think they are. That's not to say you don't have some problems, but they are in the "Something Must Be Done NOW!!!!!!" category either.

Consider: The sleepyhead data you post shows a long term median leak rate of 4.04 L/min. So for 50% of the entire time you've run your machine, the leaks have been AT or BELOW 4.04 L/min. That's pretty good for a long term median leak rate.

Consider: The sleepyhead data you post shows a long term 95% leak rate of 23.11 L/min. That means that for 95% of the entire time you've run your machine, the leaks have been AT or BELOW 23.11 L/min. Which also means that long term, your official LARGE LEAKS make up no more than 5% of the time you have used the machine. That's not great, but it's also not a disaster. Long term, your leak rate numbers are acceptable and 95% of your AHI data can be regarded as "reliable".

So how much should you worry about the leaks and what should you consider a "good enough" leak line?

Here's my definition of a "good enough" leak line for Resmed data: The median leak rate is no higher than about 5 or 6 L/min night after night. Mr. Green Smiley Face ALWAYS shows up in the morning. And the 95% leak rate is no more than 15 L/min on many nights and is SELDOM above 24 L/min. If it's above 24 L/min here and there, but Mr Green Smiley Face is showing up, prudent watching of the leak line might be in order, but you don't have to suddenly start working hard on "fixing the leaks" if the 95% leak rate is above 24 L/min now and then. (An increase in leak rates can indicate that your mask cushion might need to be replaced however.)

Now let's consider your mask issue. You write:

I am claustrophobic so I hear about the the new P10 mask and they bring it to me. It's wonderful, low profile, and I am in heaven HOWEVER my leak rate is up above the red line again for 95% above 30 or so.

Your 95% leak rate for the P10 mask is 30 L/min. That means that for 95% of the night your leak rate was AT or BELOW 30 L/min. The important question is this: How much of the night was the leak rate BELOW 24 L/min? If Mr. Green Smiley Face shows up, we know that for 70% of the night, your leaks are AT or BELOW 24 L/min.

It seems to me that your 95% leak rate with the P10 mask indicates that it is well worth the time and effort to figure out a way to make this mask work for you. To see how much work you have to do and what kind of work might need to be done, we need to see what the leak graph itself looks like---not just the leak numbers. Both SleepyHead and ResScan will display a leak graph in the detailed daily data if you download the data at least once a week. Can you post a leak graph for us to see?

With nasal pillows masks, leaks can be caused by a number of things. Sometimes it's as simple to fix as gently pulling the pillows away from your nose and allowing them to resettle against your nostrils. (For the P10 with its double cones, it's important that the pillows be fully inflated for the double cone seal to work correctly.) Sometimes playing with the headgear helps. While the headgear of the P10 is not directly adjustable, moving the straps apart or together will affect how tight the mask is at the nose. So play with that.

You also write about your leaks:

All this time, I am taping my mouth shut, so I know it is not mouth breathing.

Even with taping, air can leak out through the corners of the mouth. So sometimes the leak problem is mouth breathing/leaking even if you are taping. If that's the issue then you have to evaluate just how bad the mouth leaking is. If it's just a few minutes here and there a few times a night, that's one thing. If it's really large (above 24 L/min) for 2+ hours every single night, that's another thing. But the thing is: The median and 95% leak rate numbers are NOT enough to tell minor mouth breathing from major mouth breathing. You have to look at the leak line itself.

So end result is he gives me yet ANOTHER mask to try, this one being the nano, self sealing. So I am going to try it tonight on pressure 8 and then call them tomorrow after looking at my stats in the morning and then make them come out AGAIN and put the pressure down to 6, put on the p10 and see if that works with less pressure. The nano, I can tell is going to drive me nuts with my clostrophobia, but I will give it a shot.

If the problem is mouth leaks, the nano will have the same kind of leak problems the P10 has. If the problem is the nonadjustable headgear on the P10, you should try the Resmed Swift FX nasal pillows mask. It uses the same headgear as the nano, but the pillows are very similar to the P10's pillows.

He say's that I cannot change my own pressure that it is illegal to do so and Medicare will take my machine away.

The CPAP police won't come take your machine away if you are using it. But if you are adjusting your pressures without knowing what you are doing, you are likely to cause problems with the efficacy of your therapy. A great seal at a pressure that is too low to actually manage your OSA is really of no use to you. You will (eventually) have to find a way to maintain a decent enough seal on a mask you can tolerate at a pressure that is high enough to keep your AHI under 5.0.

Also, can anyone tell me how to get the graphs to display in the RedMed, I can only get overviews.

It's been a long time since I've used ResMed. But you do have to check a box that says to download all the data.

In SleepyHead, it's much easiser: Just switch to the Daily view for the data instead of the Overview or Statistics view. On a Windows machine, you should be able to make this choice in the RIGHT sidebar OR by going to the View menu at the top of the window.