"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 Darillyn Patterson on
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As a new user (3 weeks) of CPAP, I'm confused about something. How am I supposed to know if my therapy is working? How long should it take for me to see a difference in the way I feel? No doctor has made an appointment for a follow-up with me. Am I supposed to arrange to meet with my PCP or with the doctor who interpreted the results of my two sleep studies? (2nd test done with a machine)
I agree wholeheartedly that we don't sleep in the study labs the way we can at home. I did not sleep well for the first test. It seemed to take quite awhile for me to finally fall asleep. The second test was even worse with the loud noise of the machine and the full-face mask pressing against my skin. It seemed to me that I was awake (although with eyes closed) for nearly the entire night. The results of the test say otherwise, which I seriously question.
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Permalink Reply by Rock Conner RRT on
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I neither have nor want the power to limit my patients' choice of devices. Where did the angry assumptions come from?
My patients know as much about my biases as I do because I plainly point them out & offer each patient the opportunity to select his or her own way. Each knows all the devices available & how I arrive at my recommendation for mask, flow generator, humidifier, & maybe chin strap. If the mask doesn't work out, we utilize the mask exchange programs available from many, but not all, manufacturers.
Banyon said:Ladies,
Amen to those HORSEPUCKIES! Thank you for speaking out on the behalf of us patients. There is no such law; this is just a dishonest fear tactic to hold power over patients.
I also take exception to Rock Conner RRT's comments about APAP: "My favorite approach is auto-adjust (APAP) or servo technology, which adapts by algorithm to user needs much better than most PAP users could on their own.'
Now Rock, you did say "most PAP users", so I will go a little easy with you on this point. By way of example, I was able to tightly control my therapy by titrating with a straight CPAP pressure. I found that the APAP settings just do not work as well for me. What disturbs me about this paragraph of yours is that you speak of your "favorite approach". I am all about the patient having options. At home I have a "fancy" APAP with software and I keep my settings optimized. On the other hand, I have a cheap plain CPAP, non-data capable, that I use when travelling and it suits me fine. I don't want anyone in the medical profession or the medical supply industry (nor your lobbyists in DC) limiting which machines are available. When you say, "my favorite approach", you are admitting a bias. I encourage you to explain to patients why you like this approach and even to try to sell them on this approach. However, you should have no say in limiting patients' options for equipment.
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Permalink Reply by Banyon on
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Rock Conner RRT said:I neither have nor want the power to limit my patients' choice of devices. ............
My patients know as much about my biases as I do because I plainly point them out & offer each patient the opportunity to select his or her own way. Each knows all the devices available & how I arrive at my recommendation for mask, flow generator, humidifier, & maybe chin strap. If the mask doesn't work out, we utilize the mask exchange programs available from many, but not all, manufacturers.
Banyon said:div>
That's better and I think our approach may be similar. In your first post you made a statement about "the law" that misled me into thinking you did not want patients to take control of their own therapy.
Let me make an example of my case. I have been using CPAP for three years. I currently hold a prescription written last month that specifies a CPAP (APAP) pressure range of 4 - 20 cm. I know from personal experience that this pressure will yield an AHI > 30. I know from experience that this would mean very rough nights and days for me. Combine my other health challenges and life would be hell (and maybe short). "My guard" is always up against anyone who would even suggest that I shouldn't change my own settings. Fire, ready, aim.
IMO, the sleep industry is in its infancy and will look radically different in 15 years. I hope I am still around to enjoy the changes.
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Permalink Reply by Melodie on
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Ok. I am getting all confused with this whole subject now that I have read everyone's opinions here. I have a Bi-PAP AUTO AV unit set at 14-4-14, and an oxygen bleed of 4 liters per minute. From what I have read here, are you guys telling me that my auto sv unit isn't worth it and doesn't do the job it is supposed to be doing for me??????
I don't know how to change the settings on my Bi-PAP Auto SV, but I also don't think it needs any adjustments right now either. BUT - IF I did feel it needed a change, I want to know if I am allowed to change the settings on my own, or would I be at the mercy of my doc and the DME?
I do know that the C-PAP did NOTHING for me and my central sleep apnea problems, but once I received my Bi-PAP Auto SV - things changed drastically for me and I sleep alot better and feel more rested and rejuvenated when I wake up in the mornings.
**Something to take note of: My BC/BS PPO insurance paid for the C-PAP machine as soon as it was provided to me instead of waiting to see if it was the right machine or not. It was NOT the right machine for me! I was given the Bi-PAP Auto SV unit just a month or two later - but the insurance company is NOT paying for my Bi-PAP, just "renting" it month to month. Why don't they go ahead and purchase it for me?????????
I hope someone can clear up my confusion on this subject of discussion and also possibly help me understand if the Bi-PAP Auto SV unit is really as good as my doc and DME are telling me it is. I get the feeling that most of you here think that the auto sv units are NOT as useful as machines that can be reset. If so, I would like to know exactly why you feel that way and show me the pros and cons of the auto sv unit vs the c-pap.
Thanks!
Melodie (Mel)
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Permalink Reply by Duane McDade on
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The CPAP machines are not as good as you think.....and I do not work for any of those companies that market these machines that you claim have these human like powers , and HOW DARE you say that I'm am out of touch with what is happening with sleep Apnea I do 40-45 sleep studies a month for Christ Saked !! I know about all the so called advances that the reps say there machines will do.....THEY CAN"T DO WHAT YOU THINK MY FRIEND! PERIOD!
Banyon said:Duane,
You are out of touch with what is happening in the treatment of sleep apnea. There is a large and rapidly growing group of us who are in full control of our CPAP process. We use data-capable machines and software to monitor apneas, hypopneas, snores, and leaks. We have our pressure settings optimized better than any sleep lab could do. In your sleep lab is a strange sleeping environment that is very unlike how we sleep at home. You have lost the game to set an optimal pressure as soon as the patient makes an appointment.
The market is headed our way. Intelligent, literate patients will control their therapy. The first edge of sleep doctors changing their attitude is just beginning. They see the need for portable home diagnosis and for educated patients. For your sake find out what good things we are doing. Unless you plan to retire soon, for your professional sake and personal satisfaction, you don't want to be left behind. You will find being a medical professional who empowers their patients is a very rewarding career!
Duane McDade said:........As far as someone adjusting CPAP levels without a sleep study? NO. I don't think that is a good Idea. This must be done while you are Sleeping . The machine's program is only to let the D.M.E. company About leakage, time used, and don't let me get sterted about how bad auto Cpap machines are.....they dont work at all !!!
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Permalink Reply by sleepycarol on
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Melodie your doctor is being proactive in your therapy. You are fortunate. I think your set up is great and I haven't heard anything negative about your machine here, or other forums. At this point due to your central apnea and the oxygen bleed I would NOT suggest you make any changes because you do NOT have the common garden variety OSA like many of us.
But for others of us, me included, we do not have competent doctors or DME's following our therapy and if we are not proactive we are up the proverbial creek.
I guess Duane would rather we get inferior, lousy, inadequate treatment that can be as dangerous to our health as no treatment along with all the associated risk factors.
For every good sleep tech, doctor, DME out there --- there are many that are NOT.
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Oh my Judy HORSEPUCKIES? I repeat AUTO CPAPS DO NOT WORK >>when they are set at the factory settings of 4-20 cm/h20. The Doctor I work for has been in this field for 30 years. I'm just trying to help. The best Sleep analysis equipment can not "score a sleep study" a small board in a CPAP machine can't too. When ones health is at risk I think a Doctor's advice is more important. I seen over 100 patients who were given "auto" CPAPs and not one of them had thier OSA controlled to less than an AHI of 35! Don't be fooled ......It's not worth 10-15 of ones life. Insult me if you must....I CARE ABOUT PEOPLE, it's not just a job.
Judy said:Duane .... sorry, I appreciate your interest in taking part in this forum - BUT - I've been thru this w/a sleep specialist at a highly respected thru out the world clinic, the standard lecture on how the data from auto PAPs isn't any good, etc., etc., etc. I tell you, just lilke I told him: HORSEPUCKIES!!!!!
He COULD have spent our limited office consult time discussing my sleep disorder, my PSG results, my titration results, our options, his recommendations, etc. instead the ignoramous chose to waste "my" valuable time and his time w/a long spiel, tirade actually, on the deficiencies of the data xPAPs provide. I've seriously considered billing HIM for MY time wasted w/that consult. I won't go into his self-serving office notes that contained some less than truthful statements.
None of us are saying that an autoPAP or even today's at-home sleep study equipment is always as effective as a full in-lab PSG. In-home studies and APAPs have their limitations the prime one being they aren't able to discover or uncover other sleep disorders than OSA. BUT - in-lab PSGs have their own limitations, namely the skill of the PSGT and the scoring RPSGT and sleep "specialist".
But we can refer you to story after story of those who have been scripted the WRONG pressure based on a one-night in-lab study, of those whose local DME's RT set their xPAP's therapy settings incorrectly, etc., who have been able to effectively titrate and "tweak" their pressure settings to EFFECTIVELY achieve ideal therapy via the data provided by their APAPs.
It is totally ignorant to make such a statement: "... about how bad auto Cpap machines are.....they dont work at all !!!"
I don't advocate that "all" xPAP users should be expected or forced to take an active role in their xPAP therapy - BUT - for those who WANT to take an active role in their xPAP therapy they should be ENCOURAGED to do so and provided w/the parameters they can work w/in conjunction w/their sleep doctor - IF the sleep doctor is even worth working with. Too many aren't.
For crying out loud - THINK! Diabetics are educated to monitor their own therapy under guidance and w/in paraeters set by their doctors, asthmatics are educated to monitory their own therapy under guidance and w/in parameters set by their doctors - and theirs can be an IMMEDIATE, LIFE-THREATENING disease. Yet, those w/OSA requiring xPAP therapy aren't intelligent enough to monitor and adjust their own therapy w/in the parameters set by their doctors???? OSA is rarely an immediate, life-threatening disorder. OR is it that the SLEEP SPECIALISTS aren't intelligent enough to provide the necessary parameters and guidance to THEIR OSA patients? I submit it is the latter.
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Duane McDade said:......... I repeat AUTO CPAPS DO NOT WORK >>when they are set at the factory settings of 4-20 cm/h20. ..........
Oh Duane, we are in agreement on that. I currently hold a prescription calling for a setting of 4 - 20 cm APAP. I know what I get when I use it: an AHI around 32. And I know how I feel the next day: terrible.
What I do know is that sleep labs don't commonly find an optimal pressure setting in a one night titration study. The sleeping environment is very different from the patient's own bed at home.
I also know that I took my Respironics machine and software and titrated over a period of several nights to an optimal pressure setting (a single "straight CPAP" pressure, BTW) and have achieved an AHI < 1.0. I am getting an excellent health improvement that correlates with the lower AHI. Three nights in two sleep labs and I am sorry to say they just did not know how to prescribe a correct pressure. These are highly educated doctors with long experience operating in expensive facilities in high income areas. I received three different prescribed settings and none of them was close to optimal.
I recommend to everyone that they start out with the doctor's prescribed settings; monitor apneas, hypopneas, snores and mask leak; work to get a low mask leak; and retitrate themselves gradually over several nights to achieve an optimal therapy.
Yes, we need doctors, but for a simple case of OSA, the patient is the most important part of the therapy.
BTW, I don't care how many studies you have done because I don't know how many of your patients are suffering at home with suboptimal pressure settings. A CPAP machine that can do monitoring at home is a necessity for good therapy!
You state your doctor has 30 years experience. Too often this means the first two or three years the doctor gains the experience to be successful. Once feeling the pleasure of success, the doctor doesn't want to loose that success. So he steadfastly keeps on doing the things that he learned for the next 27 years. This is a human failing of most people. It is well known in management of large companies. To overcome it, these companies regularly rotate their most successful managers into diverse positions.
Watch out, the big changes in any field come from outsiders who are not holding on to a long experience. Sleep therapy will change dramatically over the next few years. Much, if not all, of the change will be made by outsiders taking a fresh look.
But anyway, I am glad you are getting out the message that a broad autopap setting doesn't work well.
Regards,
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Permalink Reply by RockRpsgt on
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I agree with most of what you are saying. I don't like it that my lab rules don't allow us to educate our pts on how to change the settings. Just make sure that you know what you are doing. Seek out the education needed to properly change the settings. Even if you do get your hands on a clinical manual for your machine,please please please, make sure you know what each setting you change does. It does not happen all that often but that little box (air compressor) could cause some very painfull lung damage. With that said POWER TO THE PEOPLE!
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Permalink Reply by Judy on
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*sigh* ... Duane said:
HOW DARE you say that I'm am out of touch with what is happening with sleep Apnea I do 40-45 sleep studies a month for Christ Saked !! I know about all the so called advances that the reps say there machines will do.....THEY CAN"T DO WHAT YOU THINK MY FRIEND! PERIOD!
Ahhh, Duane, I started w/"I'm sorry", I didn't mean to offend you or even to question your skills as an RPSGT. But doing a one night PSG for a patient is NOT the same as sleeping w/those results of that PSG titration for months on end. On the other hand, you are correct no APAP can take the place of a good RPSGT. OSA isn't the only sleep disorder!!! In fact, I happen to feel, and think I mentioned in one of my earlier posts in this thread, I happen to consider the good RPSGTs the real heroes in the sleep profession. BUT for just plain garden variety OSA, a month's worth of APAP data has the opportunity to be as much or more accurate than one night's PSG data given our varied experiences each day. We just DON'T sleep the same every night, night after night. We normally sleep better at home than in a sleep lab. A PSG is NOT a normal night for a patient. Its just not.
Duane also said
I repeat AUTO CPAPS DO NOT WORK >>when they are set at the factory settings of 4-20 cm/h20. The Doctor I work for has been in this field for 30 years. I'm just trying to help. The best Sleep analysis equipment can not "score a sleep study" a small board in a CPAP machine can't too. When ones health is at risk I think a Doctor's advice is more important. I seen over 100 patients who were given "auto" CPAPs and not one of them had thier OSA controlled to less than an AHI of 35! Don't be fooled ......It's not worth 10-15 of ones life. Insult me if you must....I CARE ABOUT PEOPLE, it's not just a job
I do NOT doubt that you care, you wouldn't "waste" your time on some ole grumpy apneans in a support forum if you didn't. But therein lies THE KEY: "CPAPs don't work when they are set at the factory settings of 4-20 cms". You are oh so right!!! BUT - It isn't the patients setting that pressure range - duh! Its the DOCTOR's dumb enough to order that pressure range. DOCTOR's who don''t bother to understand the capabilities and limitations of APAPs! Go to cpaptalk.com and you will find WAY MORE than a 100 patients who have tweaked their therapy settings to consistent AHIs of under 4 w/their APAPs. And I seriously doubt ANY of them ever hit as high an AHI as 35 whilst doing so.
Rocky, you said:
My favorite approach is auto-adjust (APAP) or servo technology, which adapts by algorithm to user needs much better than most PAP users could on their own. Once prescribed and properly set up, APAP monitors the user's breathing & provides optimal pressures.
Amen, Rocky. You are so right! The APAPs, properly set up, can reinforce the PSG results OR can refine the PSG results given the oppportunity for so many more nights of sleep in a more "normal" environment.
Rocky also said:
How did this get to be such an emotional issue that the suggestion of disclosure raises such ire? and Where did the angry assumptions come from?
It comes from patients who have gone thru sleep evaluation and titration, issued a bare bone compliance data only CPAP and an ill-fitting mask and turned loose w/NO FOLLOW UP, or NO education, NO explanation of their results, NO support, who have been lied to, who have been treated as village idiots ... I could go on and on about the failings of so many in the sleep profession; the misplaced reliance of the manufacturers on the medical profession to provide the proper education and support to patients. Those who end up in these support forums are 1] those whom the sleep profession has failed, 2] those who were determined to succeed w/xPAP therapy DESPITE the medical profession, 3] those who have been treated as less than intelligent adults because they WERE interested in taking an active part in their health care and xPAP therapy.We've developed a cynicism regarding local DME suppliers, those suppliers' RTs, the sleep doctors ... and the sleep profession that we've encountered have earned and deserved that cynicism.
Rocky you mentioned "under the supervision of a practitioner licensed by law to direct the use of such device", THAT is the point I would want to make. The point I so clumsily tried to get across when I said:
Diabetics are educated to monitor their own therapy under guidance and w/in paraeters set by their doctors, asthmatics are educated to monitory their own therapy under guidance and w/in parameters set by their doctors - and theirs can be an IMMEDIATE, LIFE-THREATENING disease. Yet, those w/OSA requiring xPAP therapy aren't intelligent enough to monitor and adjust their own therapy w/in the parameters set by their doctors???? OSA is rarely an immediate, life-threatening disorder. OR is it that the SLEEP SPECIALISTS aren't intelligent enough to provide the necessary parameters and guidance to THEIR OSA patients? I submit it is the latter.
Heck, we'd all prefer being able to rely on our sleep doctor and our local DME supplier's RT for advice and to be able to turn to when we run into difficulties w/our masks, our therapy settings, etc. --- BUT, it is the sleep profession that has FAILED US. Fortunately, we had the moxie and the good sense to continue w/xPAP therapy and educate ourselves!!!!
You RTs, RPSGTs, sleep doctors, who venture into these apnea support forums are going to encounter a bit of a hostile environment, not because YOU aren't caring, competent or even outstanding professionals, but because so many in your profession have FAILED US and we've HAD to educate, support and advise ourselves. For those of you w/thick enough skin to diplomatically present your side of the scenario, who are TRUTHFUL with us - believe it or not we really do APPRECIATE YOU. Just please understand where our skeptcism is coming from. You are encountering the badgered, the wounded, the lied to, who have managed to heal their own wounds and survive on their own or w/the help of fellow "wounded" and "abused".
Rocky, Duane, I also said - and I mean this:
I don't advocate that "all" xPAP users should be expected or forced to take an active role in their xPAP therapy - BUT - for those who WANT to take an active role in their xPAP therapy they should be ENCOURAGED to do so and provided w/the parameters they can work w/in conjunction w/their sleep doctor - IF the sleep doctor is even worth working with. Too many aren't.
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Rock Hinkle said:I agree with most of what you are saying. I don't like it that my lab rules don't allow us to educate our pts on how to change the settings. Just make sure that you know what you are doing. Seek out the education needed to properly change the settings. Even if you do get your hands on a clinical manual for your machine,please please please, make sure you know what each setting you change does. It does not happen all that often but that little box (air compressor) could cause some very painfull lung damage. With that said POWER TO THE PEOPLE!
Thanks Rock. I am guessing you are one of the good ones in the profession. Your attitude will prepare you for the new way that sleep apnea will be diagnosed and treated in the near future. I predict, for the short term, home diagnosing with portable equipment will spread rapidly and patients will be encouraged to become educated and monitor and tweak their own therapy. There is much work being done on other methods of diagnosis and treatment so who knows what will come longer term.
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