Replies to This Discussion

Permalink Reply by Duane McDade on August 25, 2009 at 11:40am

They can't guess , I don't guess but the machine ...that's the guess work. That is what I was saying. The M.D.'s Get the number from the sleep study CPAP, Now in some cases Dr's send the patients home with an APAP and when they bring it back a few weeks later he uses the avg the machine tells him. I dont agree with that method but maybe thats all he has. The other method I have heard of is you wear something on your finger, the doctor says you have sleep apnea he gives you an auto PAP machine and that's it. That never works. Never. Thats the three ways I know of.

susan mccord said:

Duane, that answers MY question about "what is the danger?" I still don't understand how the MDs arrive at "a number" without proof of what works on a sleep titration. Mine was arbitrarily set at 9, without testing 9, only because I was still having "events" at 7!!!! At times it feels like I'm not getting enough air. I've yet to see an actual sleep doc throughout this entire process, including two sleep studies. HOW CAN THEY GUESSTIMATE LIKE THAT????? How do we know we're safe with the level we're on? I'm totally compliant (HATE that word!), but if I'm compliant with the wrong pressure, how much good is it doing??????? Jeez!

Susan McCord

Duane McDade said:

Oh boy Dan! It's not about that at all. Do you remember that little game we all play when we were kids? What Dan? You were never a kid ? Well here it goes anyhow. Lets see, Here is the Church, Here is the steeple. Open the doors and see all the people. Those who have Apnea have people blocking thier airway, for those whpo don't remember the game the fingers are hanging down. It takes a air pressure to move those people/fingers out of the way let's say that at 9 they are half way to the roof, and at 10 some are on the roof but there's still a few hangin down. 11 still isn't quite right , but 12 well now thet're all pinned against the roof and you can breathe because noones blocking your airway. Here's the big thing Dan you can't guess at your pressure! They call it sleep apnea because you loose muscle tension when you sleep, so you may be able to breathe fine while awake...but sleep and you can't overcome you obstructions. Ya you can try to use your machine to ballpark your way into some sort of titration but they, the machines cant tell 100% if you are having a respitory event or coughing or swalowing. I don't know if you have ever done a titration maybe you have ...then you'll know this there's not a range where XPAP is going to work! Like in the church example above 9,10, 11, wont work 12 works but 13 well now you start having a different kind of Apnea they look central but they only look that way, but teh machine might say you have Central Apnea. That means you have people in your way(OBSTRUCTIVE SLEEP APNEA) and you aut pilot is malfuncioning (CENTRAL SLEEP APNEA) wow. Dont adjust the pressure you might be right guessing but there's a 90% chance you will be wrong, rendering your treatment worthless. I CARE ........Duane.

Dan Lyons said:

CONTROL & MONEY !!!!!

If they lose their control, they lose their revenue source. Thereby the need for them. Period !!!!

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Permalink Reply by RockRpsgt on August 25, 2009 at 11:55am

Me too. i like a range of 3. 1 above and 1 below optimal titration.

Cindy Brown said:

I have to say that I have become slightly swayed by some of the things I've read here. I am leaning more toward apap with a rather tight gradient of maybe 4 cm. I think patients vary on any given day and throughout the night. I think with the various pressures comfort levels might improve (I like that better than compliance) and relief of symptoms might be improved as well. My reasoning is backed by some things I've seen in the lab. We do see patients over and over again. Usually they have problems with comfort or with no improvement in symptoms. One night they are "cured" at one pressure and the next night it's a different pressure. So, I'm thinking there may be a place for these new fangled data capable auto titrators.

Cindy

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Permalink Reply by Clueless in Redwood Shores on August 25, 2009 at 12:02pm

According to my sleep doc, or the "Fellow"-- an MD working under the Doc of the day -- permanent faculty --, there are other issues besides ineffective pressure. For example, he thinks that the autoset Resmed machines in auto mode do not detect as many events as they do in spont mode, He also said that playing with the timing mechanism on that machine can induce potentially detrimental physiological changes in the patient.

He was not willing to believe my observation, "confirmed" by discussions I had followed online, that the machine permits slow inhales and exhales more readily in auto mode than spont mode. The upshot is that I am using the prescribed pressure -- 19 over 15, in auto mode.

If I were to play with self-titration, I might go up because my titration study never got higher than 19 over 15 -- I think they ran out of time! However, I will wait until my next follow-up with the newly assigned Fellow and the doc, a few weeks from now, to explore doing so.

I am not sure I should expect to get much better results than what I have currently. (Professionals -- please advise if I should be looking to do better.) On a good night my AHI is in the ones or twos and my AI is 0; on a bad night high 4s and 0.2 In the last thirty days, I had only three nights with AI over 0.1 and 20 nights where AI was 0...

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Permalink Reply by Robert Couchman on August 25, 2009 at 12:04pm

All i can say and hopefully i'm contributing some value to the conversation, is, i have allergies and there have been nights when i could not breathe for anything thru my nose! and if i were to have had control over my settings i might have jacked them so high it horrifies me to think of the damage i might have caused myself!!! blown eardrums? diaphragm?? ruptured lung??? now i may be way off and undully scaring myself but who knows? i know my doctor does!!!!

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Permalink Reply by Dan Lyons on August 25, 2009 at 12:09pm

A "new" diabetic isn't educated when they are told the diagnosis. But they are educated very rapidly and can self test and treat with in a very small time frame of hours. Determining the amount of insulin for an injection is much more a life threatening therapy than *PAP and my granddaughter at age 5 was doing it with no problem.

The key, whether you want to admit it or not, is education of the patient and not the protection of territory.

What about the first guy who made the CPAP out of an old vacuum cleaner? (Oh to have had the vision and forethought)

The technology and engineering has been advanced, and continues to make advances into the field to the point that self-titration can be done without the need of the sleep lab and technicians for a majority of the patients.

It will still involve the relationship with a trained therapist and physician, but not to the extent to which the medical industry is attempting to drive it to.


susan mccord said:

BECAUSE IN THE MEDICAL PROFESSION/INDUSTRY, WHATEVER YOU WANT TO CALL IT, THEY'RE DEALING WITH LIFE OR DEATH ISSUES.

Ordinary businesses are only out to make a profit...so they can have the luxury of thinking they're exempt from integrity.....medical canNOT be allowed to do that!!!!!!!!!!!

Susan McCord

Rock Hinkle said:

What do you want me to say? You and most of the people on this site already have the information that you need to self titrate. I agree with Duane. Not everyone is ready for that information in the beginning. I sure as hell was not on day 1 of my journey. There are risks to titrating. I believe in a PAP education, or a PAP journey. When you are ready to get that information it will somehow come to you. As far as Doctors go no other industry in the world is required to give away trade secrets. Why should the medical industry be any different.

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Permalink Reply by Judy on August 25, 2009 at 12:22pm

Clueless, you are talking a bi-level auto now. And I consider THEM to be a whole new ballgame for us patients, not so easy to understand, figure out and adjust comfortably. I'm not saying it can't be done by the patient - I guess I am admitting to being intimidated by the sophistication of the bi-levels.

And generally, we have some other complications that convince our insurances to kick loose w/the moolah for a bi-level, much less a bi-level auto making it even more "tricky" to play around w/our therapy settings. MOST SLEEP DOCTORS don't have a CLUE about how these sophisticated Resmed and Respironics bi-level autos work and ESPECIALLY they do NOT understand the differences between therapy w/the two different brands.

Resmed and Respironics both have conversion charts for titrating on one brand and providing therapy on the other. But, from the horses's mouth, the conversion charts aren't of any real value. There've been some good discussions and explanations here on just the difference in how the Pressure Support of the two manufacturers differ.

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Permalink Reply by Melinda Hertel on August 25, 2009 at 1:16pm

Hi, Judy--In response to your first question: Having an open range of pressure as on an APAP machine in theory allows the machine to respond to each breath and deliver only the pressure you need to clear the obstruction. Unfortunately, the APAP machines do not always distinguish between a true obstruction, a swallow, or a cough, or any other "normal" event, and will adjust the pressure for the "normal" events too. That is okay, as long as it is not causing an arousal that is affecting your quality of sleep. We have patients that do fine on APAP and patients who do better on straight CPAP because the arousal factor involved in APAP therapy affects them negatively.

The physician I work with would not say it is DANGEROUS to adjust your pressure 2-3 cm in either direction. However, for some people there will be a pressure level that triggers central apneas--the kind where your central nervous system thinks it is being ventilated and just decides to stop breathing on it's own. Those apneas are not good, but often people don't know they are having them. If the pressure is lowered too much, it may not be therapeutic. I would expect that most people would feel symptomatic--fatigued, sensation of gasping for air at night, etc.--if the pressure was too low. But, there are so many patients with very severe apnea that never had symptoms to begin with. So, if the pressure isn't therapeutic, they might as well not use it.

Unfortunately, medical professionals don't know everything, and finding the right pressure can be experimental. There are even patients that go through a CPAP titration study that we cannot determine the best pressure for. For those we sometimes guess and experiment , or we put them on an APAP. The important thing is that the patient has adequate support and a physician who understands the complexities of PAP therapy. I know that that can be hard to find.

In response to your second question: respiratory therapists are usually taught to withhold information on accessing the clinical menu of machines. Since PAP is a prescription-based therapy, that is probably why. And for the reasons I discussed above about what can happen if you change your pressures willy nilly. The physician I work for has us teach our patients how to access that information, and if they want to purchase the software and card readers they can. But, since he is a physician he can do that and he often prescribes that to other DME companies to do with our patients.

Hope that helps. Melinda

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Permalink Reply by Judy on August 25, 2009 at 1:37pm

Thank you, Melinda. I don't know about the Respironics, but the Resmeds have an advanced patient menu that provides the data via the LCD screen in a menu that does NOT allow the patient to accidentally OR intentionally alter their therapy settings. The sleep doctors are SUPPOSED to know that and to include that access to that advanced (detailed) patient menu in the equipment order (script). Now if THAT isn't a pile of horsepuckies, I don't know what is!!! Since that menu does exist WHY in the h*ll does it take an order from the sleep doctor (who most times doesn't even know of its existence) for that access to be turned on??? Sheesh!!!

Look, I remember the days when heaven forbid the patient should know their BP, temp and pulse! CONTROL and NOT wanting to relinquish that CONTROL is a REAL problem w/in the medical profession. WHY should we trust the medical profession and not question them??? I take NOTHING the medical profession tells me as gospel, I double check everything they tell me. If it does not make sense to me, it doesn't get done. I don't trust the medical profession any more than it trusts me.

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Permalink Reply by Judy on August 25, 2009 at 1:46pm

Okay, what about being told that too high a pressure is dangerous for someone w/COPD and blebs on the lungs, that too high a pressure could cause a spontaneous pneumothorax - and then have a pulmonologist w/a sub-specialty in sleep medicine order a loaner APAP set at 4 to 20 cms???

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Permalink Reply by Judy on August 25, 2009 at 2:54pm

Ah, you are so perceptive, Cindy!!! LOL

But they are questions gleaned from my own experiences or from the experiences of others that I've read in the various apnea support forums that seem to be valid and not a misunderstanding by the person posting the experience.

Believe it or not I really AM interested in hearing the "other side of the story". It never hurts to see and hear things from another perspective than our own. Son of a gun! SOMETIMES I even find that my idea of some situation is actually w... wr... wro... not quite right. *wicked grin*

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Permalink Reply by Clueless in Redwood Shores on August 25, 2009 at 3:19pm

Judy said:

Clueless, you are talking a bi-level auto now. And I consider THEM to be a whole new ballgame for us patients, not so easy to understand, figure out and adjust comfortably. I'm not saying it can't be done by the patient - I guess I am admitting to being intimidated by the sophistication of the bi-levels.

And generally, we have some other complications that convince our insurances to kick loose w/the moolah for a bi-level, much less a bi-level auto making it even more "tricky" to play around w/our therapy settings. MOST SLEEP DOCTORS don't have a CLUE about how these sophisticated Resmed and Respironics bi-level autos work and ESPECIALLY they do NOT understand the differences between therapy w/the two different brands.

Resmed and Respironics both have conversion charts for titrating on one brand and providing therapy on the other. But, from the horses's mouth, the conversion charts aren't of any real value. There've been some good discussions and explanations here on just the difference in how the Pressure Support of the two manufacturers differ.

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Permalink Reply by Clueless in Redwood Shores on August 25, 2009 at 3:33pm

And generally, we have some other complications that convince our insurances to kick loose w/the moolah for a bi-level, much less a bi-level auto making it even more "tricky" to play around w/our therapy settings. MOST SLEEP DOCTORS don't have a CLUE about how these sophisticated Resmed and Respironics bi-level autos work and ESPECIALLY they do NOT understand the differences between therapy w/the two different brands.

"kick loose with the moolah for a bi-level..." LOL! I purchased my machine on the black market for less than what Apria, Cigna's preferred provider, was quoting as the monthly rental! Maximum annual DME allowance is $700 -- if / when Cigna pays me that $700 will constitute 70% of the cost of the machine -- masks, tubes, filters, etc. are all out of pocket. I am a Californian -- I sold via auction some Cabernet which I acquired when I had more money and a stronger sense of taste (did I mention that I had UPPP some years back -- did in the aforementioned sensory perception, but not, alas, the OSA. Now the story is that all surgeries are stopgaps to avoid the surgery du jour: breaking and resetting the jaw. I suspect if I had that procedure and it didn't work (although the sleep doc says the surgeons declare success with outcomes that we might not choose to celebrate), I would be told that that procedure was simply a way of postponing a tracheotomy. But ask me how I really feel about insurance companies and sleep surgeons.

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