"please keep me updated about oximeters "
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Since I am feeling crochety today.
1] Would you please explain to me WHY it is DANGEROUS for an apnea patient to adjust their xPAP pressure 2-3 cms one way or the other but NOT DANGEROUS for a sleep doctor or a local DME's RRT to set an apnea patient's APAP with a wide open range of 4-20 cms?
and while I am at it
2] WHY a patient should NOT have access to their xPAP data any dibblety-d*mn time they please instead of just whenever they can get their local DME supplier, or sleep lab or sleep doctor to do a data download FOR them?
1] Would you please explain to me WHY it is DANGEROUS for an apnea patient to adjust their xPAP pressure 2-3 cms one way or the other but NOT DANGEROUS for a sleep doctor or a local DME's RRT to set an apnea patient's APAP with a wide open range of 4-20 cms?
and while I am at it
2] WHY a patient should NOT have access to their xPAP data any dibblety-d*mn time they please instead of just whenever they can get their local DME supplier, or sleep lab or sleep doctor to do a data download FOR them?
Views: 200
Replies to This Discussion
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Permalink Reply by Dan Lyons on
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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 Duane McDade on
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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 Judy on
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Ah, but Duane McCord!!! You did NOT answer MY questions. Please, do. And Rock Hinkle, I see you posting in another thread. Where are you w/this one?
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Permalink Reply by RockRpsgt on
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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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Because there is a health care crisis in this country. And it boils down to money and availability.
I know you guys get tired of hearing about the diabetis analogy - BUT - CPAP is less dangerous than insulin. The training and education is necessary - diabetics get that. Apneans don't.
Just as you pros get tired of the diabetis analogy so do we apneans get tired of the "you guys are interested and have gotten your education, the majority of apneans AREN'T interested in learning", etc., etc. Why? You don't allow for the fact that the "deer in headlights" look is just information overload and time needed to take it all in, that they have apnea, that there is no cure (except a tracheotomy). WHY does the sleep profession INSIST on BELIEVING that the majority of apneans are too stupid to learn? more stupid than a diabetic? When discussing this w/the Respironics Rep last night he brought up how many diabetics, despite education, etc., DON'T maintain a healthy lifestye, don't watch their diet, don't lose weight, etc., etc. So? Apneans shouldn't be given the same opportunity, the same choice to alter their life style accordingly or suffer the consequences?
Interesting you refer to the "medical industry" instead of the "medical profession".
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Permalink Reply by susan mccord on
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I wanta know, TOO! I didn't even realize there was danger involved in moving settings. I haven't done it, but what's the danger, particularly with increasing them? I'm nearly certain mine need to be increased, but if it's dangerous how do they KNOW where to set it without a sleep study?????
Re: getting printouts of data, I guess I'm very fortunate that my DME guy will print anything I want, anytime I want it. Cheerfully. I hate it that a lot of people on here have so much trouble with DMEs.......that's just wrong on so many levels.
Susan McCord
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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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Judy, you're absolutely right with the diabetes/apnea education comparison. There IS no comparison. Diabetics get educated thoroughly. We do not! What people do, once they're armed with all the info they need to proceed in a healthy way, if they make lousy decisions they're doing it for a multitude of reasons, VERY FEW of which have to do with being too stupid. Generally it's that they're not willing to change old, well-loved habits, even at the risk of their own lives. I have two sons, 47 and 43. Both were diagnosed with Type II diabetes 5 years ago, in the same month. One is careless with his diet, exercise, etc., although he DOES take his meds. The other is so disciplined with his care that he squeaks. He NEVER, and I mean NEVER strays from his treatment plan. And both of them have the exact expected results. One's stable. The other one isn't. One will sacrifice for his health. The other won't. Go figure, but that's the way ALL people are. I used to have cancer patients, with lung CA or lung mets, who smoked all the way up to the day they died! I had a young (43) woman in Hospice who died with a cigarette lit and smoking it at the MOMENT she died. I was there. Unbelievable. But that's the way people are. HOWEVER, they HAVE to be taught about risks and benefits, whether it's apnea, diabetes, cancer tx, or heart disease, people MUST be armed with information before they make decisions about how "compliant" they're going to be. Apnea patients are being left in the dust. It sucks. And the only way to try to make a change is to keep cranking the same wheel. So kick it, Judy. It's critical that ALL of us try to force education on whoever it is that makes these decisions.
Is there an Apnea Organization nationally????? If so, I for one, am gonna get on whatever group of them does outreach. Squeaky wheel gets the grease, 'specially in health care these days. I've been on both sides of the education issue, as an educator and a patient. SG and my DME (and the internet) are my ONLY sources of apnea information, and I'm all over getting it. What about the people who don't have these resources????? God, the lack of education issue just drives me NUTS!!!!
Susan McCord
Judy said:Because there is a health care crisis in this country. And it boils down to money and availability.
I know you guys get tired of hearing about the diabetis analogy - BUT - CPAP is less dangerous than insulin. The training and education is necessary - diabetics get that. Apneans don't.
Just as you pros get tired of the diabetis analogy so do we apneans get tired of the "you guys are interested and have gotten your education, the majority of apneans AREN'T interested in learning", etc., etc. Why? You don't allow for the fact that the "deer in headlights" look is just information overload and time needed to take it all in, that they have apnea, that there is no cure (except a tracheotomy). WHY does the sleep profession INSIST on BELIEVING that the majority of apneans are too stupid to learn? more stupid than a diabetic? When discussing this w/the Respironics Rep last night he brought up how many diabetics, despite education, etc., DON'T maintain a healthy lifestye, don't watch their diet, don't lose weight, etc., etc. So? Apneans shouldn't be given the same opportunity, the same choice to alter their life style accordingly or suffer the consequences?
Interesting you refer to the "medical industry" instead of the "medical profession".
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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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Look at any country out there. there is profit in every kind of medicine be it socialized or capitalistic. The people that do these jobs have to be allowed to make a living. Should I not be allowed to support my family? Judy you have no problem changing your pressure when you want. I personally did not say that anyone was not smart enough to be able to do it. I said that not everyone was ready at first. The people that are can figure it our do one way or another. Through mechanicl prowess, curiousity , by constantly nagging people about it on sites like this. Judy you posted this so that you could entertain yourself today. Quit smiling!
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http://ajrccm.atsjournals.org/cgi/content/full/167/5/674
Despite the encouraging results of Fitzpatrick and coworkers (5), further studies are needed before self-titration is ready for clinical use. We should establish uniform procedures for determining "optimal" CPAP on in-laboratory manual CPAP titration polysomnograms. Self-titration and titration with the new generation of autoCPAP machines should be compared with in-laboratory titration, not only in terms of "optimal" pressures, but also in terms of safety, functional outcomes, and objective measures of treatment adherence. We need to determine which patients are suitable candidates for self-titration, and whether patients, once empowered, will continue to self-adjust their CPAP after the initial titration. Studies on self-titration should state the signals recorded during testing, identify the criteria used to determine pressure settings during the use of different titration methods, specify the input provided by bed partners, and avoid exposing the patients to an "optimal" pressure experience before randomization. Much of the current clinical research in obstructive sleep apnea is focused on determining the effect of treatment on the daytime and cardiovascular consequences of this disorder. As we pursue the answer to that important question, we need to validate clinical pathways that initiate our patients on a pressure that is truly "optimal."
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Thanks, Cindy. You are so right, this is NOT an ideal world. And never will be. Still it is a darn good world overall. And, just to clarify my position: I firmly believe and PERSONALLY PREFER an in-lab sleep evaluation PSG, an in-lab xPAP titration PSG and guidance and education from my sleep professionals. FORTUNATELY, I have my sleepguide mentors!!!! And I appreciate EACH and EVERYONE of you!!!
Rock, no way would I ever deny YOU the right to earn a living. You sure do have my number tho, don't you? *wicked grin*. And you know darn well I have NEVER and would NEVER accuse YOU of all people of considering apneans too stupid to adjust their own therapy! I PREFER NOT to tinker w/my therapy settings w/o professional guidance since being switched to a bi-level, but I d*mn well want access to my data any dibblety-darn time I feel so inclined - including the middle of the night if it pleases me.
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