Why I always insist on a data-capable machine and software

This guy may or may not know much about sleep medicine, who knows, but he has this to say:
http://www.netwellness.org/question.cfm/81322.htm

A single night sleep study may not determine the AHI accurately in up to 15% of sleep studies. And some people, with significant disease, may have their sleep apnea underestimated and thus missed during one night and yet have significant sleep apnea on a second night in the lab.

The guy who said this is:

Response by:
Ziad Shaman, MD
Associate Director, Pulmonary and Critical Care Fellowship Program
Diplomate of the ABIM in Sleep Medicine
Assistant Professor
Division of Pulmonary, Critical Care and Sleep Medicine
MetroHealth Medical Center
School of Medicine
Case Western Reserve University

You may or may not believe his data. You may or may not have confidence in his credentials. You may or may not agree that "up to 15%" is "often." In any event, I am afraid this quibbling over the definition of "often" and what constitutes "often" is overshadowing the very important point that when people are having ineffective therapy, a data capable machine can help them tweak. Isn't that really the more important point?

Shouldn't we all be in agreement that a data capable machine is generally recommended to patients? If not, then I am completely lost.

Thinking I would go to the dictionary so I didn't stick my foot in my mouth (which I often do) about this whole "often" thing, I found even the dictionaries are ambiguous. Seems there's no set measure of incidence that qualifies as often. Only when one says "more often than not" is it measurable. Reminds me of a discussion in school maybe 5 decades ago. While "a couple" means exactly two, with "few" and "several" it gets murky. So does this mean everybody is RIGHT?

I personally think non-data machines should go the way of dinosaurs, and that any doctor should want all the information possible to see that their patient is effectively treated, even if it is just confirming they got it right in the lab.

kteague wrote:I personally think non-data machines should go the way of dinosaurs, and that any doctor should want all the information possible to see that their patient is effectively treated, even if it is just confirming they got it right in the lab.

I agree, Kathy. Absolutely.

When you folks get the meaning of the word "often" nailed down, I hear Bill Clinton may need some help with the meaning of "sex".

Sorry...I couldn't resist.

I agree that non-data capable machines shouldn't even be sold anymore. Given the general acceptance of home titrations via APAPs once a baseline PSG has been done, it just doesn't make economic sense to have anything less. The additional cost of data capture is far less than an in-lab titration. Case closed.

As to software, while I do think there are people who might be better off without it, I don't subscribe to the notion that it should be denied to them because of any potential problems that may occur due to it's misuse. Should I be denied the ability to buy a car just because I "might" have an accident? Should I be denied a car because someone else might have an accident? The software is no different.

To deny the software to those who are capable of using it reasonably and with due diligence is, in my opinion, both unethical and potentially harmful.

I was diagnosed in 1997, perfectly titrated at 8, and was put on a non-data capable CPAP. Worked great for close to 6 years. When I moved, my new doc did a split study and bumped me up to 10. I slept horribly during the titration and doubted the results, but decided to follow his advice. As I was still using my original CPAP, I bought a water column manometer and turned the little screw to set the new pressure. I saw no reason to pay someone to do that. I had 3 years of engineering before I switchdc majors, so I like to use that knowledge when I can. 10 worked for a while, until I started have trouble with my sinuses. I slowly worked up to 11.5. After sinus surgery in 2007, I had hoped I would be able to lower the pressure, but I felt worse and would wake up several times a night. So I went back to 11.5. My sleep doc thought 11.5 was too high and wanted to tritrate again, but I declined. After years of getting by without data, I got to be very good at figuring things out by trial and error. 3 months ago, my original machine died. The doc wanted to order an S9 Elite, but I insisted on the Autoset and I suggested 10-13 for a range, mainly to win his agreement. After 3 months, my average pressure - 11.3. Just a tad below what I had found on my own without data. Now my doctor knows that I had been right, that I actually knew what I was doing, and the titration he wanted to do would have simply been a waste. But he also knows that I know my limitations and don't experiment outside of my knowledge.

So, I've had 1 good titration, 1 so-so, and avoided a needless one by being proactive in my own health management. But it would have been MUCH easier with a data capable machine, and my doctor would have known that I knew what I was talking about for the past 3 years instead of thinking that I was too stubborn or stingy to have another titraiton. Now, at least, we both have data that confirms what my best regiment should be and there is no reason for either of us to doubt the other.

I don't care how capable a doctor is nor how accurate a titration may be, they are based on a single night that may or may not be representative of a person's typical night. That's just common sense. No validation studies are needed, thanks anyway.

On top of that, having daily access to the graphs has allowed me to solve a riddle that had me confused for years - why was I waking up 1-2 hours after going to bed every night? The last 3 months of data has shown that it wasn't apnea-related. So, I talked with my regular doctor about changing my neuropathy dosing. We moved my morning dose to 2 hours before bed. At the same time, I saw mention here about not eating for a few hours before going to bed. I no longer wake up like I was for the most part. Until we had some storms a few nights ago, I slept 9 days in a row without ever getting up and only woke up, briefly, a couple of times during those 9 days. Without a doctor looking at my data daily and quizing me about my whole day, it would have been impossible for anyone other than myself to figure this out. And I needed the software to do it.

All this boils down to empowering us to be active in our health management. To deny that in any way should be considered unethical by the entire medical community. Some folks can take advantage of that empowerment, some can't, and some will misuse it. But that's been the way of the world since time began. Fool's may be ingenious, but the lowest common denominator shouldn't prevent the rest of us from enjoying better health.

I almost forgot - the software should be included on a disc with our machines. The software is nothing more than a graphing and report tool. It isn't very complicated at all, so the cost associated with including a disc is minimal compared to what the machines cost. Or save the cost of discs and publicly allow everyone to download it. The only folks that can use it are the ones that bought a machine, so they don't have to worry about freeloaders. And if they complain about the software allowing settings changes, here's all the pseudocode that's needed to turn it off: If this copy of the app is intended for patients, then disable the settings button. One line of code. 1 minute of work. One copy of source code, two builds. Problem solved.

We aren't cookies, we're humans. Cookie cutter approaches shouldn't be applied to us. Yet that is exactly what non-data capable machines and no software is.

Knock, knock.

Who's there?

Hello xPAP manufacturer, my name is Common Sense. Can we talk?

lucynethel1998 wrote: Unless I have lost it completely, my software only allows me to print out/save as a PDF?

Open the PDF file to view it at 100%, then take a snapshot of the pdf file (if you have Vista, use the snipping tool). Crop it if you need to get it trimmed down.
Save that snapshot as a jpg file.
Then go to the photo hosting site, upload, get the IMG address and post it here.
Use the preview button to see if you see the image, if not, try again.

BernieRay wrote:the software should be included on a disc with our machines. The software is nothing more than a graphing and report tool. It isn't very complicated at all, so the cost associated with including a disc is minimal compared to what the machines cost. Or save the cost of discs and publicly allow everyone to download it. The only folks that can use it are the ones that bought a machine, so they don't have to worry about freeloaders. And if they complain about the software allowing settings changes, here's all the pseudocode that's needed to turn it off: If this copy of the app is intended for patients, then disable the settings button. One line of code. 1 minute of work. One copy of source code, two builds. Problem solved.

I like that, Bernie.

I wonder what a complete newbie thinks when trying to make
sense of this thread.
A lot of dirt scratching... pole pissing......
hackles up and pontificationing......
I hope you are listening carefully and taking notes....

Very entertaining for me......educational.
Listening to my friends.
Bringing the importance of this therapy to the forefront.
Each of you making points that are critical to be successful.

....and is the case, more often than not.....
so thankful to call you all my friends.

.....and more often than not.....
so thankful you supported me and educated me......
and are now part of my new life.

I'm listening.

Rage on!

Pugsy wrote:

lucynethel1998 wrote: Unless I have lost it completely, my software only allows me to print out/save as a PDF?

Open the PDF file to view it at 100%, then take a snapshot of the pdf file (if you have Vista, use the snipping tool). Crop it if you need to get it trimmed down.
Save that snapshot as a jpg file.
Then go to the photo hosting site, upload, get the IMG address and post it here.
Use the preview button to see if you see the image, if not, try again.

The BAD Night: Fought all night with my mask. Leaks every other minute, mask farts every other breath etc. Just a horrible night....

Last night my BEST night EVER! But still periodic breathing???? So today I feel like a MILLION bucks but having periodic breathing and that means I am gonna die or something? I STILL don't even come close to understanding my software properly after a week....I notice how much better my "snore" is today since I only popped the mask to itch a couple times verses the night before where I spent the entire night popping it to scratch....I assume all that mask farting is being recorded as a snore? Anyway, using the padacheek alone last night on my Quattro FFM, I was able to sleep in COMFORT and barely had any leaks or other discomfort issues and it shows on the charts. I THINK???? But this periodic breathing scares me.

lucynethel1998 wrote:Last night my BEST night EVER! But still periodic breathing???? So today I feel like a MILLION bucks but having periodic breathing and that means I am gonna die or something? I STILL don't even come close to understanding my software properly after a week....I notice how much better my "snore" is today since I only popped the mask to itch a couple times verses the night before where I spent the entire night popping it to scratch....I assume all that mask farting is being recorded as a snore? Anyway, using the padacheek alone last night on my Quattro FFM, I was able to sleep in COMFORT and barely had any leaks or other discomfort issues and it shows on the charts. I THINK???? But this periodic breathing scares me.

Congratulations on a good night and feeling like a million bucks today - 62 is great eh?

If the Quattro FFM is the first mask you have tried, then you have done very well. OFTEN, it takes acquiring and working with several masks before patients find one that works well for them.

If it were me, I would not worry about a short episode of PB - it can occur in healthy individuals; but let's see what somebody more knowledgeable has to say.

BTW, many of us use the excellent Padacheek products.

Well now, it looks like jnk had a change of heart during the night and decided to edit out some of the stench he started this brouhaha with:

jnk wrote: Last edited by jnk on Sat Feb 26, 2011 10:23 pm, edited 1 time in total.

jnk wrote: Last edited by jnk on Sat Feb 26, 2011 2:14 pm, edited 1 time in total.

Very nice jnk. A noble move on your part.

rested gal wrote:

roster wrote: and to repeat, contrary to accusations imagined and thrown about, there was nothing in the OP that was critical of sleep technicians - in fact they could use it as a defense of suboptimal titrations.

Huh??? So now you're imagining that some people in this thread have been accusing you of being critical of sleep technologists?

Oh, I did not need my excellent imagination in this case. Of course you can’t see all of the accusations now because jnk did some editing late last night.

But he did leave this clearly inferred accusation that my OP was critical of sleep technicians:

jnk wrote: It would be a shame to dog the pros at the good labs if they almost always get the settings right, wouldn't it?

jnk introduced the subject of competence of sleep pros in this thread - not me.


None of this is to say that I will not be critical of sleep professionals at other times. I just think the point of this thread is proved without getting into that debate and even a patient using the most competent sleep lab in the country and being attended by the most competent sleep tech in the country would do well to verify everything at home in his own bed with his own machine and software.

roster wrote:

lucynethel1998 wrote:Last night my BEST night EVER! But still periodic breathing???? So today I feel like a MILLION bucks but having periodic breathing and that means I am gonna die or something? I STILL don't even come close to understanding my software properly after a week....I notice how much better my "snore" is today since I only popped the mask to itch a couple times verses the night before where I spent the entire night popping it to scratch....I assume all that mask farting is being recorded as a snore? Anyway, using the padacheek alone last night on my Quattro FFM, I was able to sleep in COMFORT and barely had any leaks or other discomfort issues and it shows on the charts. I THINK???? But this periodic breathing scares me.

Congratulations on a good night and feeling like a million bucks today - 62 is great eh?

If the Quattro FFM is the first mask you have tried, then you have done very well. OFTEN, it takes acquiring and working with several masks before patients find one that works well for them.

If it were me, I would not worry about a short episode of PB - it can occur in healthy individuals; but let's see what somebody more knowledgeable has to say.

BTW, many of us use the excellent Padacheek products.

Quattro FFM was my 1st of 4 masks in this my FIRST month of APAP. I was also given a HORRID mask I used 1 night and buried it! Then got the Quattro FX (OK to me but bothers me constantly pulling upwards?), and then bought a FlexiFit HC431 Full Face CPAP Mask with Headgear. Tried 2 of the 3 included sized but just could not get "perfectly" comfortable. Traded it to another forum member for a hybrid mask, the InnoMed Hybrid with 3 sizes pillows and mouth etc. Our "trades" are in the mail so may get it as early as tomorrow. I am 90% sure I won't be able to tolerate that style with ANY type nasal pillows...But willing to try anything at this point. My huge fear at this point is that my current pressure using all my full face masks will blow my brains out with nasal pillows! I am tempted to lower my pressures from 10-12 clear down to 7-12 just to play it safe? Sinus surgery last year makes me nervous, especially since I am having minor nose bleed this 1st month of cpap (APAP for me). I also have to take Coumadin to thin my blood since some bad heart problems (prior strokes & heart attack etc) so that may also be helping cause the sinus bleeding?

lucynethel1998 wrote: I am tempted to lower my pressures from 10-12 clear down to 7-12 just to play it safe?

If that were my data I would take a more incremental approach by dropping the mininum pressure of 10 by one or one-half cm each night. Check the Daily Details report each morning and if you see the number of hash marks in the OA/H/FL field increasing, it is an indication the min pressure is below the level at which the machine can effectively prevent events.

I spent a few weeks doing this each night and eventually came to a min pressure that consistently "made good chart", made me comfortable at night, and made me feel good the next day.

lucynethel1998 wrote:I am 90% sure I won't be able to tolerate that style with ANY type nasal pillows...But willing to try anything at this point. My huge fear at this point is that my current pressure using all my full face masks will blow my brains out with nasal pillows! I am tempted to lower my pressures from 10-12 clear down to 7-12 just to play it safe?

I use the nasal pillow only type of mask. While it did seem just a bit weird at first having the air going up my nose at the pressure, it really isn't uncomfortable. I use an APAP with minimum of 10 pressure and I think the max is near 18.
I think my brains are still intact.... I will caution that even a 1 cm drop in the minimum pressure might let more events sneak in. I recently tried a drop to 9 cm and my reports showed a "cluster" of events and my AHI doubled just from one cluster. I used to have lots of clusters at my original titrated pressure of 8 cm but at 10 cm minimum pressure, I only have a rare event show up on reports. So if you try the lower minimum, be careful and watch those reports closely. Sometimes with the lower minimum the machine simply cannot respond quick enough to deal with the events.