"please keep me updated about oximeters "
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Mike started a discussion about this at http://www.sleepguide.com/forum/topics/npr-web-chat-on-sleep-apnea .
The issue here is sleep doctors and other medical professional and DMEs who believe you should follow their instructions blindly and let them control your therapy. There is a rapidly growing body of well-informed patients who are proving they can make big improvements in their therapy by being fully involved. A major aspect of being fully involved is having a fully data-capable machine (and better yet the manufacturer's software) to monitor apneas, hypopneas, snores, and mask leak. To improve their therapy, these patients are making adjustments to their CPAP settings.
With a little experimenting with settings and monitoring the results, most of us have made significant improvements in our therapy.
What do you do when you are faced with a medical professional who doesn't want you to be so involved and does not want you to change your settings? I am proposing the statement below as a "battle cry" to be presented over and over to these professionals by their assertive patients.
"Sleep doctors and other sleep medical professionals need to come out of the dark ages for their own sake and that of their patients.
The market is moving in the direction of patients being fully involved in their therapy. Look at how medical professionals treat diabetes. They educate and empower their patients. Their patients take blood samples; read blood glucose levels; interpret the results; adjust their medications; give themselves injections of insulin (!); and adjust their diet and exercise.
CPAP is much simpler and less invasive than diabetes treatment, but just as important to good health. Educate your patients. Encourage them to learn how to read data from their data-capable CPAP machines. Empower them to prudently modify their CPAP settings.
You jeopardize your medical practice by letting your patient base become frustrated and hostile toward your "gold standard" sleep apnea treatment. Don’t be left behind. Empower your patients to take control of their own therapy and improve their lives."
I had to quit my first sleep doctor because he and his associates were adverse to patients with this attitude. I am happy to say that I found three other doctors who are comfortable with me being responsible for my own therapy and making changes to my CPAP machine settings.
Regards,
The issue here is sleep doctors and other medical professional and DMEs who believe you should follow their instructions blindly and let them control your therapy. There is a rapidly growing body of well-informed patients who are proving they can make big improvements in their therapy by being fully involved. A major aspect of being fully involved is having a fully data-capable machine (and better yet the manufacturer's software) to monitor apneas, hypopneas, snores, and mask leak. To improve their therapy, these patients are making adjustments to their CPAP settings.
With a little experimenting with settings and monitoring the results, most of us have made significant improvements in our therapy.
What do you do when you are faced with a medical professional who doesn't want you to be so involved and does not want you to change your settings? I am proposing the statement below as a "battle cry" to be presented over and over to these professionals by their assertive patients.
"Sleep doctors and other sleep medical professionals need to come out of the dark ages for their own sake and that of their patients.
The market is moving in the direction of patients being fully involved in their therapy. Look at how medical professionals treat diabetes. They educate and empower their patients. Their patients take blood samples; read blood glucose levels; interpret the results; adjust their medications; give themselves injections of insulin (!); and adjust their diet and exercise.
CPAP is much simpler and less invasive than diabetes treatment, but just as important to good health. Educate your patients. Encourage them to learn how to read data from their data-capable CPAP machines. Empower them to prudently modify their CPAP settings.
You jeopardize your medical practice by letting your patient base become frustrated and hostile toward your "gold standard" sleep apnea treatment. Don’t be left behind. Empower your patients to take control of their own therapy and improve their lives."
I had to quit my first sleep doctor because he and his associates were adverse to patients with this attitude. I am happy to say that I found three other doctors who are comfortable with me being responsible for my own therapy and making changes to my CPAP machine settings.
Regards,
Views: 2029
Replies to This Discussion
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Permalink Reply by Judy on
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Well, I admit to having more confidence in a full in-lab sleep evaluation simply to be SURE that there aren't other sleep disorders in conjunction w/or in place of "just" OSA. But I'm inclined to think once past the first in-lab PSG, the APAPs and in-home studies can take their place w/no need for another in-lab study until or unless CPAP therapy isn't cutting the mustard anymore.
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Permalink Reply by Banyon on
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Judy said: "Well, I admit to having more confidence in a full in-lab sleep evaluation simply to be SURE that there aren't other sleep disorders in conjunction w/or in place of "just" OSA. ........."
This is the point I disagree with. Some claim that 90% of the OSA cases are yet to be diagnosed. This places the number of undiagnosed patients in the tens of millions. Let's assume a low number of just ten million (30 to 60 million is more likely). If a lab PSG costs $1700, that is $17 billion just for the one night in the lab. We cannot afford that and even if we could there are not enough labs and medical personnel to get it all done. And so far we have just talked about one night. Maybe a second night is needed for titration.
First is needed a quick screening during routine physicals by family physicians, all of whom need to be thoroughly trained. Screening tools should be good enough to identify the likely simple OSA cases (95%) and arrange a home study with a portable unit. Patients who test positive should then be given a good CPAP machine, set to say 7 cm. Daily uploads to a sleep center would be monitored and instructions issued. Titration could be achieved in this manner at home. If complications are noted the patient can be scheduled for his first PSG.
That is a very rough idea of what I would propose. A lot of objections can be made to this, but just remember we cannot afford and do not have the resources to get the job done in sleep labs. So for anyone who objects to this proposal, please also state what you would do to get all these people diagnosed and treated.
Regards,
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Permalink Reply by Mike on
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I think there is a great deal of wisdom to the approach that Banyon is suggesting with respect to in-lab PSGs. The vast majority of people might be diagnosed and treated in the manner he proposes, with an in-lab PSG prescribed only for those patients who are not achieving good results with CPAP to exclude other, more complicated afflictions.
Banyon said:Judy said: "Well, I admit to having more confidence in a full in-lab sleep evaluation simply to be SURE that there aren't other sleep disorders in conjunction w/or in place of "just" OSA. ........."
This is the point I disagree with. Some claim that 90% of the OSA cases are yet to be diagnosed. This places the number of undiagnosed patients in the tens of millions. Let's assume a low number of just ten million (30 to 60 million is more likely). If a lab PSG costs $1700, that is $17 billion just for the one night in the lab. We cannot afford that and even if we could there are not enough labs and medical personnel to get it all done. And so far we have just talked about one night. Maybe a second night is needed for titration.
First is needed a quick screening during routine physicals by family physicians, all of whom need to be thoroughly trained. Screening tools should be good enough to identify the likely simple OSA cases (95%) and arrange a home study with a portable unit. Patients who test positive should then be given a good CPAP machine, set to say 7 cm. Daily uploads to a sleep center would be monitored and instructions issued. Titration could be achieved in this manner at home. If complications are noted the patient can be scheduled for his first PSG.
That is a very rough idea of what I would propose. A lot of objections can be made to this, but just remember we cannot afford and do not have the resources to get the job done in sleep labs. So for anyone who objects to this proposal, please also state what you would do to get all these people diagnosed and treated.
Regards,
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Oh, I don't disagree about the value of the home sleep studies! Don't misunderstand me! I'm delighted w/a recent suggestion of a full PSG at home w/an accompanying attendant properly accredited is an exciting concept. And I'm even interested in the more sophisticated and capable home sleep study equipment coming on the market. I'm just saying, when all is said and done I do have more confidence in a full PSG done in-lab. I also have quite a bit of confidence in the PAP device manufacturers coming out w/better and better and more effective at home testing equipment.
Surprisingly, even to me, I have more confidence in the xPAP device manufacturers than any other field of sleep medicine. Followed by the good RPSGTs. When it gets down to the "sleep doctors" and local DME supplier's RTs and the DME suppliers themselves ..... not a whole lotta respect from me - they've gotta PROVE themselves to me first. I know there are good ones out there, we've met a few in this and other apnea support forurms, but .....
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By the way, something that was pointed out to me, or brought home to me, was that I failed to comment on one of our "pros" statement that APAP didn't work, and their being set at 4 cms to 20 cms.
WHO IN THEIR RIGHT MIND sets an APAP at 4 cms to 20 cms??? NO WONDER sleep doctors and other pros think APAPs don't work! Very few people can breathe comfortably for any lenght of time at 4 cms. PLUS these APAPs start out at the lowest setting and then move up in increments in response to an "event" (I think in 0.2 cms increments but won't swear on that, I may have that confused w/Ramp), they do NOT just jump to the 20 cms or even by 4 cms-5 cms increments. If the pressure range is too wide it can't reach the optimal pressure in time if that optimal pressure is a good spread above the starting pressure.
If an in-lab titration was questionable due to lack of enough sleep time an APAP set 1 or 2 cms below the optimal or highest pressure reached during the questionable titration and 3-4 cms above the optimum or highest titrated pressure or even left at 20 cms is the PROPER way to utilize an APAP. There are articles on the proper way to utilize an APAP. 4-20 cms "ain't" it. Try PubMed.
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Rock Conner RRT said:Carol, your point that we should be able to manage our own CPAP equipment is logical & I share the sentiment, but as Mike's helpful log of the labeling requirements shows, such devices are required by federal law to be operated under the supervision of a practitioner licensed by law to direct the use of such device, blah blah blah. I'm not defending the FDA labeling, in fact I don't agree with it, but I am stating the danger of advocating that folks undertake their own CPAP management without letting them know that there are potential, if remote & unlikely, consequences for doing so. How did this get to be such an emotional issue that the suggestion of disclosure raises such ire?
sleepycarol said:If it is illegal for one to change THEIR own pressure -- I would like to see a copy where it states this within the law itself --meaning the actual statues. It IS illegal for a DME to change the pressure without a script -- but no ONE has been able to produce the exact context of the law about patients changing their OWN pressure. As such you, as a RTT, have to make full disclosure about changing pressure since YOU can not change pressure without a doctor's script.
If you are proactive, have the software, are prudent about your changes I see no reason why one shouldn't change THEIR own pressure.
A diabetic is allowed to monitor their therapy and adjust accordingly. This is far more dangerous than a machine blowing air. And does the law ACTUALLY state in diabetes therapy that it is okay for them to do these things or is it just "understood" that they will be proactive.
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sleepycarol said:All I can add is
AMEN!!!
I, too, advocate that patients should be empowered to monitor their own therapy and to take charge. I think that sleep professionals do have a place and there will always be those patients that simply do not care. But for us that want to take charge we should have the blessings of the sleep professionals.
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ok - question for ya'll - how do you get the data off your card and onto your computer? I have been curious about my numbers/info, but have no clue how to transfer info.
also - I have noticed that I seem to be getting tired around 5 or so in the evening and am waking up a little sleepy. the DME adjusted my mask for me when I first got it and told me to clean it (completely taking it apart and scrubbing the whole setup) at least weekly. I took the strap off to soak the mask in vinegar water to sterilize it at the end of the first week, then had to put it back together - it has not really been comfortable since. I have a nasal mask with the gel stuff. the top part of the strap is velcro and (like a dummy) I didn't mark it before I took it off the mask. I have had to readjust it twice, and it still has issues. it feels too tight or too loose around my nose - the first couple nights, I couldn't get it to seal properly, when I finally did, it felt like it was plastered to my face! this is another reason I am curious about my numbers - I want to see if it is leaking at night. my husband mad the comment the other night that it "sounded like (I was) trying to snore past it" which makes me think I didn't have a good seal and it wasn't working properly. anyway - how can I readjust to fit?
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Permalink Reply by sleepycarol on
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As Banyon pointed out we can not tell you how to read the numbers if we do not know the make and model of your particular cpap/apap/ machine. Please post this information if you are interested in obtaining the correct software.
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I've been a sleep educator for quite a while and have no problem teaching patients how to adjust pressures AS LONG AS THEY ARE AWARE OF THE POTENTIAL DANGER and have some regular followup and downloads of their equipment to assure that they are not causing central apneas AND they do not have cardiac or pulmonary conditions that could be exacerbated with higher pressures, AND I am comfortable that they are intelligent enough to manage their own therapy. Diabetics that manage their insulin (or not, in many cases) have some immediate feedback loops. Patients with sleep disordered breathing do not. In reading some of the responses on this page, I notice that no one has really mentioned some of the contraindications or risks associated with PAP therapy Be aware that applying positive airway pressure decreases cardiac preload and thus reduces stroke volume. Any treatment that affects the normal pressure gradients in the thoracic cavity can compromise cardiac function, including causing arrythmias. Pulmonary conditions such as blebous emphysema, history of pneumothorax or pneumomediastinum are relative contraindications to PAP treatment, as is acute otitis media and sinusitis, particulary at inappropriate pressures. Higher PAP pressures often cause an increase in central apneic events which CAN BE FATAL. There have been several cases reported of patients changing pressures (related to drinking on weekends!) in which they woke up dead in the morning due to central apneas, rupture of un-detected anyurysm, or stroke. Changing pressures while under the influence of alcohol is NOT a good idea. PERHAPS placing patients on auto-titrating PAP equipment may be the answer, but again, only if they agree to regular followup and downloads. Titrating appropriate PAP pressures is NOT necessarily best done in one night in a lab, I fully agree with that. If I had my way, every patient would have an auto machine for the first 30 days of therapy with one of the remote cellular monitoring devices attached, with conversion to CPAP at the end of the trial.
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Monica said:ok - question for ya'll - how do you get the data off your card and onto your computer? I have been curious about my numbers/info, but have no clue how to transfer info.
also - I have noticed that I seem to be getting tired around 5 or so in the evening and am waking up a little sleepy. the DME adjusted my mask for me when I first got it and told me to clean it (completely taking it apart and scrubbing the whole setup) at least weekly. I took the strap off to soak the mask in vinegar water to sterilize it at the end of the first week, then had to put it back together - it has not really been comfortable since. I have a nasal mask with the gel stuff. the top part of the strap is velcro and (like a dummy) I didn't mark it before I took it off the mask. I have had to readjust it twice, and it still has issues. it feels too tight or too loose around my nose - the first couple nights, I couldn't get it to seal properly, when I finally did, it felt like it was plastered to my face! this is another reason I am curious about my numbers - I want to see if it is leaking at night. my husband mad the comment the other night that it "sounded like (I was) trying to snore past it" which makes me think I didn't have a good seal and it wasn't working properly. anyway - how can I readjust to fit?
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