Question About Severity

I've had insomnia for twenty years, but I was only recently diagnosed with sleep apnea. I have a million questions, but rather than putting them all in one post, I'll start with one.

After my sleep study and cpap study I had a meeting with my pulmonologist. He told me that I had severe sleep apnea and that I was waking up 78 times an hour. 78 times?!? How is that possible? I'm waking up more than once a minute? Severe is more than 30 apparently, and my number is 78?

Unfortunately the pulmonologist I saw was a Russian doctor with a very thick accent. I found it difficult to follow him, even after asking him to repeat a lot of what he was saying. My PCP set me up with an appointment with a different sleep doc, and I'll be seeing her in a few weeks, but till then I'm kind of on my own, trying to deal with all these questions and the new equipment which I've been trying to use for about a week now.

It's very possible...10 seconds is how long the reduction in flow needs to happen to earn a flag. So you might have had a bunch of 10 second events..or a mixture of 10 second and/or longer duration.
That AHI number is also an average per hour over the entire night. You likely had times where your average for a single hour was more or less but the overall average came out to be the 78. We have had people reporting AHI over 100.
The number of events is important but duration of events is also important and there isn't any sort of standard guideline for severity for duration.

RobySue's blog may help you with some of your questions
http://adventures-in-hosehead-land.blog ... -test.html

along with Janknitz's blog
http://maskarrayed.wordpress.com/
be sure to read the one about what to expect from your DME

My untreated number is 84. O2 levels down to 64%. Make sure you get a copy of the report to better understand your condition.

Happy to say that under treatment, my average AHI (Apnea/Hypopnea Index) is around 3.5. Therapy works. I feel better and, most importantly, my body is no longer under the duress of apnea which can cause all sorts of health problems including heart disease and stroke.

More questions? You are in the right place. Plenty of folks here can help.

- Flappy

He probably meant that your breathing was interrupted 78 times per hour.
Sleep apnea sufferers don't normally wake with each event but your sleep is disturbed.

Getting hung up of numbers is a waste of time. You have sleep apnea or don't, there isn't any good sleep apnea. Many 10 or 20 sec of apnea, BAD, a few 1 to 2 minutes event's, BAD. Four or more minutes events, Bad or dead!

The idea is to prevent the events... Jim

This is my own theory/observation. I think this would be hard to study since Sleep Apnea is simply “discovered” whenever it is finally noticed.

I am suspicious that Obstructive Sleep Apnea numbers change their meaning somewhat as the disease proceeds. First there are apneas, which increase with frequency probably to a very high number. As the systems are constantly strained the numbers of apneas and hypotneas become less, however the oxygen desaturations increase dramatically.

So the reaction to the events fatigues. The body becomes tired. And the O2 levels plummet.

So look at the combination of the AHI plus SpO2 percentage to determine the likely damage.

You might even make a simple formula that takes the lowest SpO2 compared to 93% to form a multiplier to work on your AHI. In my case my lowest blood oxygen SpO2 reading was 55%. So then we take the resultant .38 and multiply the number times my AHI of 52 for a “severity number” result of 19.76. If my lowest SpO2 had been 75% my “severity number” would have been 9.36. If lowest SpO2=85% then 4.76.

Just my own silly idea but based upon reading many studies that well relate the most severe damage (brain damage for example) to lowest desaturations.

The machine you say you have is a ResMed S9 Escape.

Unfortunately they did not do you any favors by giving you that machine.

It provides NO data at all except compliance data (# of hours you use the machine each night).

Some have been successful in getting the DME to exchange it for a ResMed S9 AutoSet. The sooner you request that, the better your chances of getting it switched.

Read the links provided to you above.
Once you understand what you are up against, the better chance you have of being successful.

Of course, it is always easier to request the better machine before they give you the non-data capable one. But, you still have a chance. Question is whether you are willing to take on that battle.

JDS74 wrote:He probably meant that your breathing was interrupted 78 times per hour.
Sleep apnea sufferers don't normally wake with each event but your sleep is disturbed.

Thanks, that makes a lot more sense to me. The sleep doc showed me the readout from my cpap study and indicated the section where the correct air pressure had been achieved. Subjectively I felt that there had been a fairly solid block of sleep at the end of the study, but it's really hard to base anything on vague memories when you're half asleep. I can't read and interpret these tests on my own, and I really don't have anyone that I trust completely to do it for me.

I've been reading as much as I can absorb of the information available on this site. The importance of a "cpap support team" has been made pretty clear to me, but it's easier to say than to achieve. I consulted a dozen different MDs when my sleep troubles began and in the intervening years. Not one of them ever suggested sleep apnea as possible cause of my insomnia. The average MD doesn't appear to know too much about sleep disorders. I was "diagnosed" by accident, fairly recently, after being hooked up to a heart monitor. Since then the amount of medical misinformation I've received has been staggering.

So now I've had a cpap machine given to me. The technician who delivered it gave me yet another heavily accented, hard-to-follow orientation, but one thing which was made clear to me was that there's a chip in my machine which monitors my usage, and if I don't make effective use of the machine in three months time, it will be taken away from me. I think this machine can help me so I'm determined to make this work, but I feel like I'm being put in the position of being my own doctor, which is a bit intimidating.

The question of the appropriateness of the machine I've been given is a perfect example of that. Fight for the right machine? Sure, but what's the right machine? How do I make use of the right machine even if I can get hold of it? Frankly, the only aspect of this situation I feel is completely in my control is weight loss. I've lost 70 lbs. since being told I probably had sleep apnea. My new PCP has indicated that he thinks weight loss will restore my ability to sleep normally, but I can't say I'm certain about that. Just in case it doesn't, and to help me until I hit my target weight, I want the cpap therapy to be as optimal as possible. I don't see my new pulmonologist until 5/8, so I feel like I'm on my own till then, at least. Hopefully, one question at a time, I can start to get on top of this thing.

With the S9 Escape you get zero useful data for anyone to evaluate...you or your equipment supplier or even your doctor..the only thing available is hours of use.
So even the people who would/should know how to interpret the data (which BTW isn't all that hard to learn yourself) don't have anything to evaluate...no leak data...no nothing but you used the machine X number of hours.

It's worth the fight to get a full data machine...heck, for leak monitoring if nothing else. If leaks are bad then your therapy could be in the toilet and you not know it and DME and doc keeps telling you to "give it time" because you keep telling them you feel like crap and no amount of time in the world will fix a big leak.

Pugsy wrote:With the S9 Escape you get zero useful data for anyone to evaluate...you or your equipment supplier or even your doctor..the only thing available is hours of use.
So even the people who would/should know how to interpret the data (which BTW isn't all that hard to learn yourself) don't have anything to evaluate...no leak data...no nothing but you used the machine X number of hours.

It's worth the fight to get a full data machine...heck, for leak monitoring if nothing else. If leaks are bad then your therapy could be in the toilet and you not know it and DME and doc keeps telling you to "give it time" because you keep telling them you feel like crap and no amount of time in the world will fix a big leak.

Makes sense to me. I guess the question is, why was this machine chosen? Who chose it? I assume that the DME company would prefer i get a better, therefore more expensive machine, as they will make more money from it. I assume my pulmonologist (whoever that turns out to be) would also prefer a machine which produces more useful data. So who do I have to fight? My insurance provider, I assume?

Doesn't the severity of the condition factor into the decision of the appropriate machine? My thinking thus far has been focused more on the mask than the machine. How does this mask stack up to the competition?

Ah, the "why did I get a brick rather than something useful" question.
DME's get paid based on the code for machine type. In this case the code is the same for the brick you got and the more capable machine you didn't get.

But ... The cost to the DME is less for a brick than for a more capable machine.

Ergo, they make more money on a brick.

Ditto to what JDS74 said about the DME and the brick and the profit margin.

Masks....mask preferences are highly individualized and whatever it takes to work for you comfortably...that's the main goal.
What I might love you might hate and what I might hate you might love and the only person's whose opinion that matters is yours..not what I might think.
I have never used a full face mask. Don't want to and don't need to and it wouldn't really matter if I had because everyone's face and personal preferences are different.
All masks have lovers and haters...that's just the nature of masks.

You do want a full data machine though. A couple of months ago I was helping a PR S1 user who had a brick. His DME had lied to him about what data it offered. He was told "Oh, you don't have any leaks and your AHI is 0.0"...he pushed for a full data machine anyway and his leaks were through the roof and he would never have known...and all the time the DME was telling him "give it time and you will feel better"...no amount of time would have fixed those leaks and he didn't even know he was having them. People do sleep through some massive leaks...myself included.
He was told a bold faced lie and that really pisses me off...borders on malpractice IMHO.

JDS74 wrote:Ah, the "why did I get a brick rather than something useful" question.
DME's get paid based on the code for machine type. In this case the code is the same for the brick you got and the more capable machine you didn't get.

But ... The cost to the DME is less for a brick than for a more capable machine.

Ergo, they make more money on a brick.

Wow, that's... astonishing. Thanks for the information. I guess I'll try searching for posts about people who have waged that fight and see what strategies they employed. Maybe I need to try to leverage one DME against another. If I make a switch my current DME won't make a dime, will they? That might get them to see the wisdom of giving me a worthwhile machine.

Did you read this?
http://maskarrayed.wordpress.com/
Scroll down just a little ways till you see what Janknitze wrote about "Help, I have been given a brick".

Pugsy wrote:Did you read this?
http://maskarrayed.wordpress.com/
Scroll down just a little ways till you see what Janknitze wrote about "Help, I have been given a brick".

I only read the first post. I didn't see the strategy section. Looks like a good approach. Thanks.

So the probability is that my current pulmonologist is "in on" the scam. I have to find out what my options are with the insurance co, and get my PCP to cooperate in writing a proper prescription. Hopefully I can get things straightened out. My PCP requested that he get a copy of the sleep study, and I requested that my pulmonologist send it to him. I'll have to make sure that's been done.