CPAPtalk.com

We know CPAP therapy to be valid as it works for millions of patients. Thus, if a particular patient's body does not respond to the CPAP therapy, it is the patient who has failed to benefit from CPAP. In this instance, there is no negative connotation implied by "fail". Just a statement of fact. The patient's airway simply did not respond appropriately to a therapy which normally works.

Slartybartfast wrote:And I don't think that the term "fail" should necessarily be taken in the pejorative sense.

I agree that it's not meant to be taken in a pejorative sense. But the words we choose often have unintended consequences based on the listener picking out a different, but legitimate meaning of the word than the speaker intended. Fail is one such word in my humble opinion---particularly when the structure of the sentence is Patient failed CPAP instead of CPAP failed Patient.

It's easy enough to get discouraged with this therapy if things don't go well for an extended period of time; it's twice as easy to get discouraged when starting the therapy triggers a downward spiral of symptoms and daytime functioning problems---particularly when you are given no heads up that such a thing might possibly occur, let alone what you should do if you are unlucky enough to find yourself totally unable to function after one week on CPAP.

And to do the therapy night after night (as I have done) and then be told, "you failed CPAP", well, it's hard to NOT take it the wrong way: Because they don't tell you that you've DONE the therapy and the therapy is not working the way it should.

No--at the start, they simply tell you to keep TRYING for another few weeks or months. Then eventually they tell you that you've TRIED to make the therapy work and that you FAILED. And if you're lucky, they'll have a working suggestion ("So we think you should TRY bi-level"). But now I've been told that I've TRIED my best at Bi-level and have FAILED--because I was still complaining of insomnia issues and daytime sleepiness and aerophagia and can only list "joint pain is less most of the time" on the list of positives at my last meeting. Not that I've DONE bi-level, but only TRIED bi-level. Although the two PAs at that last meeting did not mean to convey to me that I had not tried hard enough to make CPAP/BiPAP work and that it was not my fault that I was still having serious issues with tolerating the therapy, that is, in essence the message that was conveyed to me. And their only suggestion? Literally one of them told me I should consider quitting xPAP altogether to see if that would cure my insomnia and they both urged me to consult a sleep apnea dentist about an oral appliance and that I should make an appointment with their office only after that consult was done---so that a follow up sleep study could be done to verify the oral appliance was working. (And if it's not? Then what?)

To put it in perspective: I'm also in the middle of a long (and so far unsuccessful) set of treatments for getting the chronic migraining under control. But at the neurologist's office, I haven't been told, "You failed at topamax. You failed at lamictral. You failed at depakote." No, the language was "You can't tolerate topmax. You can't tolerate lamictral. You can't tolerate depakote."

So replacing Patient failed CPAP with Patient cannot tolerate CPAP would be a step in the right direction when describing a person who has used the equipment exactly as directed for a sufficient amount of time without the desired results. And it would parallel language used in other areas of medical practice. And it just might get the point across to the folks supposedly helping us address our problems with treatment that when we report problems it is NOT always because we're looking for an easy way out. Rather we report problems because those problems are making it very difficult to tolerate therapy and manage to live our lives in a reasonably normal fashion. And that we want and need help in figuring out a way of addressing those problems so that we are not eventually forced to chose between the lesser of two evils since for many of us xPAP really is the only viable treatment for our condition.

The wonder of it all is that every night when I go to bed, I take that mask in my hands, stare at it, and say to myself: One more night---it's not going to kill you to do one more night of this. Hoping against hope that tonight will be the night where I will actually wake up the next morning feeling even BETTER than I used to feel back before all this adventure started: Waking up totally refreshed. With no aerophagia at all. And no badly chapped lips. And no headache. And no headache starting right after I finish breakfast. And no pain in my hands, feet, or back. And no congestion and sinus pain. And alert and ready to seize the day instead of muddling through it the best I can.

robysue wrote: So replacing Patient failed CPAP with Patient cannot tolerate CPAP would be a step in the right direction when describing a person who has used the equipment exactly as directed for a sufficient amount of time without the desired results.

Except that would likely not be accurate. Most people can "tolerate" CPAP...it just doesn't work for them. Their bodies merely "fail" to derive the desired benefit from the therapy.

robysue wrote:the words we choose often have unintended consequences based on the listener picking out a different, but legitimate meaning of the word than the speaker intended.

If your perception is different from what speaker intended, then you FAILED to properly interpret his meaning.

I hear you loud and clear, RobySue! I completely understand where you are coming from, and agree that,while the intent is understood here, the true meaning can indeed be harsh. I have NOT failed cpap/apap/bipap, but the machines have failed to allow me to get the restorative, restful sleep that so many of us seek (and some have attained). 100% compliance does not sound like failure on my part.

Re: the migraines, I've got some experience there. Chronic migraine during college cost me dearly! After takign 5 years to finish what should have been a 4 year degree, graduate school was out of the question. I had the academic ability, just too many classes I had to repeat because I was so sick back then. As soon as I graduated, the frequency dropped off. Now it's down to maybe one every few months.

No drugs were available in the '70s other than Caffergot, and the side effects were about as bad as the blasted migraine.

BOTOX has recently been approved for chronic migraine. You might talk with your neuro-Doc about that. If you DO go down that path, make sure whoever applies it has LOTS of experience with it. It's not the sort of thing that just any old doc can give you.

robysue wrote: or in NOT bringing our AHI down to acceptable levels or in triggering enough CAs to result in a diagnosis of CompSA.

This is a great statement that I can identify with and also part of a problem if an AHI of 5 is an indication of failure.

I am somewhat proud to have an average AHI of 5.5 that is NOT at a clinically acceptable level. Prior to March 23, when I got my S9, I had no idea and 6 months ago I didn't even know the definition of AHI. My pressure was at 10cm and that first night with my S9 my AHI was 14.5. I have since been tweaking a few things and have been bringing my OAs and CAs down a bit.

But think about that... I had been at 10cm for 10 years and never knew I was a failure at CPAP.

It is so easy to pigeon hole people.

John

LinkC wrote: Except that would likely not be accurate. Most people can "tolerate" CPAP...it just doesn't work for them. Their bodies merely "fail" to derive the desired benefit from the therapy.

"It just doesn't work for them" in WHAT sense? My AHI's have consistently been below 2.5 the entire time I've been on xPAP. And that's the whole clinical point of therapy isn't it? To reduce the AHI to less than 5? So how has my body "failed" to derive the desired (clinical) benefit from CPAP therapy?

Now look at what I would say are "tolerance" issues:

Aerophagia: Pre-CPAP this was NOT an issue. Clearly caused by CPAP. At the beginning it was intolerable in the sense of waking up several times a week with a rock hard, basketball sized stomach full of air that would not dissapate for hours at a time. Had a choice been presented to me of CPAP vs. Oral appliance at that point, I might have jumped to try the oral appliance---I was in that much pain. But only thing offered was tweaking xPAP since I was still being told I was not a candidate for an oral appliance because my diagnostic RDI = 23.4. The PA and I have been able to minimize, but not eliminate aerophagia with switching from CPAP to APAP to BiPAP and tweaking BiPAP. I have hope that with continued patience and guidance (from the new sleep doc's office perhaps) that I can further minimize aerophagia to a side effect that I can live with. But it has taken real work---both on my part and the PA's part in ordering and justifying the large number of changes in pressure settings and in ordering and justifying the two additional sleep studies to get this side affect down to a tolerable level.

Excessive daytime sleepiness: Did NOT have this before starting CPAP. I know most people with undiagnosed OSA do, but I did not. So reducing EDS symptoms was NOT a goal of xPAP therapy for me at the start of therapy. But something triggered severe EDS shortly after I started CPAP. And eliminating the CPAP-caused EDS has been a major issue for me. And why did I develop EDS after starting CPAP when I didn't have it before? I suspect that with all the sensory overload from the CPAP that my sleep actually became significantly more fractured than it already was. And of course, the fact that the Spontaneous Arousal Index doubled from 3.5/hour in my diagnostic sleep study to 7.1/hour was never discussed with me even when I asked whether it was possible for the CPAP to be causing arousals of some sort. (And that spontaneous arousal index remained high at 7.0 and 6.3 on the two bi-level titrations.) Nor was there any explanation given as to why I did get some Stage 3 sleep on the diagnostic study, but none at all on the first TWO titrations studies. I still wonder if I was not getting any Stage 3 sleep throughout most of the fall when my daytime sleepiness was at its worse. The third titration study, done about a month and a half after starting BiPAP did show Stage 3 sleep. And by that point, the worst of the EDS had managed to work itself out---but only after starting BiPAP. Today, EDS is still there on many, but not all days. And if/when I ever conquer the insomnia I hope that this too will become a manageable side effect I can live with.

Insomnia: The granddaddy of all my adjustment issues. While I have a history of bouts of insomnia throughout my adult life, the insomnia was quiescent at the time I started CPAP. However, my insomnia had always been triggered by stressful events--usually life-changing events---in my life. I told the sleep doc that I was prone to insomnia when dealing with major life-changing events at the one consultation I had with him prior to starting CPAP. It's not a surprise that with the onset of MAJOR aerophagia on night 3 of therapy that the insomnia monster decided to wake up. At this point, even if I were to just give up the BiPAP (which I'm not contemplating doing) I don't think the insomnia would just go away---not without further CBT work of the sort that I have been doing since Dec. 30 and continue to do even though I feel as though I've been fired as a patient by the PA who started the CBT with me. WHEN (IF?) I can ever get the insomnia truly under control, THEN, and only then, will I be sure that I'll be able to live with BiPAP for the long haul in the sense of tolerating everything else that the BiPAP seems to cause.

Air blowing into my eyes via my sinuses: This one did make the PA in the sleep doc's off sit up and pay attention. And I didn't get told "Give it more time and you'll adjust". This---rather than my early complaints about the basketball-in-stomach level aerophagia---was what made her switch me from CPAP @9cm to APAP---first running wide open at 4--20cm for a week of autotitration and then at a "prescribed" range of 4--8cm based on that autotitration. And as long as my pressure stays at 8cm or below, I don't seem to get this. But when I have occasionally experimented by allowing my max pressure to be higher than 8cm, when ever the machine gets up above 9cm, air-in-eyes via the sinuses raises its head again. Heaven help me if I actually needed 12 or 13cm of pressure to keep my airway open.

Chapped lips: The gift from Kaa that keeps on giving ... I know it sounds trivial. But living day after day with severely chapped lips (to the point of looking abnormal) is not easy. Fortunately the PA in my PCP's office dealt with this by having a local, non-chain pharmacy concoct a special non-petroleum lip balm that lasts all night for me to use. It's not cured the chapped lips, but it's minimized them.

Elevated blood pressure issues: I can't say "high blood pressure" but it's there nonetheless: According to the PCP my BP readings in their office over the last 5 or 6 years have consistently been in the range of 100/60 to 110/70. This entire year the BP has been ranging from 120/80 to 125/85. Not enough for anybody to sit up and take notice of even AFTER I point out those numbers are high for me and routinely dismissed as not possible by the PA in the sleep doc's office---"CPAP lowers BP if it does anything at all." Caused by stress from not coping with the lack of daytime functioning and the nighttime insomnia? Maybe. And maybe when the stress of this very difficult and very extended adjustment period is behind me this too will go away.

The combined effect of all these problems on the quality of my life during these last seven months has been severe. And if I believed that there were some viable alternative to xPAP, I would pursue it. But I don't see a viable alternative for me---given my TMJ problems and the fact that my apnea is NOT mild or at the mild end of moderate. But that does not mean I would say I find therapy "tolerable" yet.

OK, then you "failed CPAP" because your body can't tolerate it.

I suspect most people who fail CPAP do so because of high AHI rather than toleration, but I don't have any hard numbers. I wasn't talking specifically about your case, but the semantics involved.

RS is correct to call it semantics. To a Medicare bureaucrat, failing at cpap may not be perjorative, but in conversation, failing at something has a perjorative connotation.

OK, I'm punctilious. I had to check the OED--mine is 1971. There are 14 senses of the word "fail," plus a few obsolete ones––verbs, both transitive (fail calculus) and intransitive (a bank can fail), as well as gerund (do it without fail.) Number 12 unfortunately justifies the usage we dislike:

To be unsuccessful in an attempt or enterprise...Said of persons;...

To me there is an inappropriate, perjorative connotation in that usage, and, therefore it's a poor choice in a discussion with a patient.

I'd prefer that professionals were more careful how they speak. It would be more correct to say, "CPAP failed to help you." Sloppy language is everywhere, though, especially in professional jargon. I've been guilty of that, so I guess I have to cut others some slack.

Except that it's a technical term...understood to NOT be pejorative by medical and insurance folks. If the speaker does not intend it as a negative, the listener should not cast that interpretation on it.

Sure, there might be several better ways to say it, but taking offense where none was intended isn't going to change the industry jargon. Heck, use my name, I don't mind. "You LINKed CPAP. Here's your more expensive machine." Has a nice ring to it!

Working in an engineering environment, I have noticed the differences in language content and intent between surveyors and attorneys.
While surveyors, like scientists, strive to be clear, accurate, and understandable, attorneys have a completely different agenda.
I'm not really sure what it is. . .
This brings us to insurance jargonese. Probably has more to do with money, liability, and culpability that science, medicine, or honesty.
---just my 2 cents worth.

Do the surveyors ever substitute "that" for "than"? (just jerkin' your chain... )

And also failing at being a good patient since I have no desire to try an oral appliance because (a) my apnea is in the middle of the moderate range and (b) I have severe TMJ problems, both of which usually considered contraindications for the oral appliances.

I know this is not your point, but as an aside, I don't think (a) is truly a contraindication for oral appliance use/success, and I'm not sure that (b) necessarily is.

Sure, there might be several better ways to say it, but taking offense where none was intended isn't going to change the industry jargon. Heck, use my name, I don't mind. "You LINKed CPAP. Here's your more expensive machine." Has a nice ring to it!

It's not so much taking offense as being emotional on my part---it's tough to go into an appointment (that you THOUGHT would go ok because you'd been able to deal with ONE major problem feeding the insomnia) and walk out being told "you failed" at BiPAP. And essentially invited to NOT come back---at least not until you try something that you don't believe is in your best interest.

And it's not like the PAs are talking a different machine. No---the advice literally was: "Since you failed BiPAP and say the insomnia is your main problem, just stop using the BiPAP, and see if that fixes the insomnia. You don't desat too bad and you have no heart conditions, so sleeping without xPAP likely won't do you any harm at least for now." (If that were true, then why was the doc so insistent in September that I had NO choice except CPAP and that I had to start CPAP NOW NOW NOW to the point of me telling my husband to run telephone interference when I was shopping for a good DME and the doc's office kept calling saying I needed to just pick XYZ DME that's next door to their office---a dme that would have stuck me with a brick?) And PAs continued with, "See a sleep apnea dentist, and come back in the fall for another sleep test once the oral device has been fully adjusted to make sure it works." They're ready to "give up" on getting me adjusted to BiPAP because they've decided I've "failed" at xPAP, but I am not yet willing to give up on BiPAP---particularly since it is not yet paid for and there is no guarantee that an oral device would (a) work, (b)be tolerable---and I'd be starting the whole adjustment process over right at square one, and (c)it is questionable whether my already stingy insurance company would agree to pick up the cost of BiPAP consumables after paying for an oral device that did not work or that I truly could not adjust to due to TMJ complications.

robysue wrote: No---the advice literally was: "Since you failed BiPAP and say the insomnia is your main problem, just stop using the BiPAP, and see if that fixes the insomnia. You don't desat too bad and you have no heart conditions, so sleeping without xPAP likely won't do you any harm at least for now." (If that were true, then why was the doc so insistent in September that I had NO choice except CPAP and that I had to start CPAP NOW NOW NOW ...

That's a good question to ask the sleep doc. Have you been back to see him and get his opinion on all this? As far as what the PA said, this gets back to the recurring question of whether you need to be on this at all. Have you scheduled a second opinion from another sleep doc? What if you really don't need to be on it? Wouldn't that be good information to have in order to make an educated choice about what to do?

And I'm not sure that her suggestion that you stop using BiPap and see if that fixes the insomnia is an unreasonable one, although you might want that second opinion first.