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The PAP Police, "THEY DO NOT EXIST!
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BiLevel48 Offline

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Post: #1
The PAP Police, "THEY DO NOT EXIST!
You know, It is absolutely amazing. When I think about how so many patients are afraid to adjust their own PAP therapy settings.

They are afraid that the SO CALLED PAP Police are going to come and then arrest them. In other words, they think that It is ILLEGAL, TO ADJUST THEIR OWN PAP THERAPY DEVICE'S SETTINGS." I have spent a lot of time thinking about that. A LOT of time thinking about that. It just ticks me off to think that people have been lead to believe such garbage. SUCH LIES. People go about using their PAP device, and they may feel like they are not getting enough pressure(s), or that he is getting too much Pressure(s) and so he decides to call his Dr. and guess what. "Oh, We will set you up for a Re-Titration procedure whenever we can get you in.

It will be quite a while maybe a month, or so, because of how busy that we are, and also, one of our assistants is out on Maternaty leave, so I'd estimate within a month or so, you will have an appointment."

The patient is in such discomfort at night and is losing sleep.

So in the meantime, He calls his DME, and guess what. "Ohhh, that DME is going to say, "Oh yeah, You are not allowed to adjust your settings on your own. We have to adjust your PAP therapy device's settings, HOWEVER, we need a prescription from your Sleep Physician. I'm sorry." And guess what, In order to get that prescription, your Sleep Physician wants to perform a Retitration. WHY? So that they can titrate you based on what they see in the Polysomnographic laboratory, not based on how you are feeling. Who knows, that CPAP machine may be set at 15 in the PSG Lab in order to get your Apneas, Hypopneas under Control. Well, what If that is too high for you? Well, you feel like you are getting too much air. Too much pressure. So, by the time they get your Sleep Disordered Breathing stopped, or at least under control, You're possibly uncomfortable.

So, I'd like to set the mood for my discussion with a Case Scenario. Uh, YEAHHHH, I LOOOOOOOOVE reading Case Studies, and Scenarios. So, here we go.

Mr. Porter presents to his Primary Care Physician for Excessive Daytime Sleepiness, Morning Headaches, AND, Impaired Cognition. Mr. porter's Dr. Does the Physical Examination, and then he explains what he thinks about Mr. Porter's possible Sleep Disorder and explains to Mr. Porter that He thinks that Mr. Porter might have Sleep Apnea.

Mr. Porter is in the Morbidly Obese category.

So now, he explains that he would Like for Mr. Porter to undergo a Sleep Study. Explains that this is the way that they would determine whether Mr. Porter does have Obstructive Sleep Apnea. Mr. Porter Explains that he would feel nervous about having to sleep in the hospital. The Dr. then states that he could perform a Home PSG, however, It would not be as ideal as if here to sleep in the Polysomnographic Laboratory. Mr. Porter's Primary Care Physician, or PCP, explains that he really really does need to lose weight, he really needs to start eathing and exercising Healthier, and HE MUST take his health seriously. The Dr. sets Mr. Porter up for a Polysomnographic Evaluation in the PSG Lab. Mr. Porter is very nervous, but he tgoes to the Polysomnographic Laboratory on the night of his evaluation thinking about how much the Dr. stressed the seriousness of Sleep Apnea. The Dr. really stressed the importance of getting treatment. The Polysomnographic Evaluation was set up relatively easily for that next night.

So Mr. Porter nervously goes up for his Sleep Study.

That night in the waiting room, He has his papers that he received with the Order for the Polysomnographic Evaluation. He hands them to the Receptionist who is also the Respiratory Therapist who is going to be performing his PSG. So, after he does that, sits and waits while the other patient registers. After this, The Respiratory Therapist takes Mr. Porter into the Pre-PSG Area where he asks him a series of questions about his daytime habbits. Mr. Porter then fills out the Epworth Sleepiness Scale.

HE had a 23 out of 24 meaning that Mr. most certainly does have SEVERE Excessive Daytime Sleepiness, or EDS. EDS is a Profoundly serious thing. mr. Porter did say that he fell asleep while driving, and he ended up in a ditch.

He was unharmed physically, He did say, he was pretty shaken up afterwards, but then he states that he falls asleep numerous times per day, and is always tired, NEVER feeling refreshed in the morning.

Mr. Porter drinks Caffein numerous times a day, but today, after 11:00 he did not drink any Caffein and He was fighting to remain awake even as the RT and him were talking, and Mr. Porter said that the main thing that was keeping him awake was the nervous gut feeling that he felt about the Polysomnogram. Except he used the words Sleep Study. That is when the RT explained to him what was going to happen. He explained to Mr. Porter that there were ABSOLUTELY NO NEEDLES, There was NO discomfort, and the whole entire time, The RT who let's call Sammy would be watching him the monitors, and the other patient. There were only two patients in the Lab that night. Mr. Porter was then shown a small video that discussed Sleep Apnea, Obstructive, Central, and Mixed, and then there was a very little bit of discussion on the Complex form of Sleep Apnea, or CompSA and then the risks of Sleep Apnea were explained in the video with an Annimation demonstrating how Obstructive Sleep Apnea causes the airway to essentially gecome obstructed. Mr. Porter was then taken to the room where his PSG would be conducted that night. PAP Therapy had been explained pretty well in the video that Mr. Porter was able to observe that night. Mr. Porter was given a further explanation in the PSG Lab about CPAP. Mr. Porter was then allowed to try on a mask and then to acclimate as it is called. He was shown a Full Face mask, a Nasal mask, and then Nasal pillows. Mr. Porter said that so far, he liked the full face mask the best. He explained that he was a mouth breather and so the full face mask was more comfortable. While Mr. Porter sat and watched TV breathing on the PAP Titration device with a straight CPAP of 5cmH2O the RT explained to him that this was used to help and splint the airways open while patients slept. He did discuss a little bit about BiLevel and ASV, but not very much. Mr. Porter watched TV whilst the RT went to set up another patient who was coming for a full night's titration and who had already gotten to acclimate during his first night in the PSG lab when there were not enough Sleep Disordered Breathing Events to put him on PAP and titrate him during his first night of PSG.

Mr. Porter was connected and then after Mr. Porter had been connected, the RT went out for the Bio-Callibration on both patients. The Bio-Callibrations were performed with both patient's sensors and equipment working perfectly. Mr. Porter would sleep for two hours having an AHI during that two hour period of 300 and with his main Events being Obstructive Apneic episodes. He was then woken up and placed onto PAP therapy. Mr. Porter was titrated with CPAP, to a high of 15cmH2O and then the next day, Mr. Porter was woken up and informed that obviously, he did in fact suffer from SEVERE Sleep Apnea.

That Same Day, Mr. Porter's Sleep M.D. was able to get a script into the DME who brought out a ResMed CPAP machine.

Well, that night, Mr. Porter went to bed with his ResMed S9 CPAP and a Humidifier with the ClimateLine Circuit, AND, with his prescribed pressure.

When Mr. Porter put the machine on that night for sleep, He immediately felt that the pressure was too high.

He said that it basically felt like the air so much that He felt like he was drowning in air.

He did not sleep that well during that night, and he gave it a few more nights, but he was even more tired than he was before he was started on CPAP.

So, a few days Mr. Porter contacted his DME, and asked the DME how to change the pressure on his machine, because it felt wayyyy too high to him. The DME provider said, "Ohhhh, I'm sorry, but if you were to change your CPAP pressures, you would be commiting a crime. I would have to adjust your pressures, but in order for me to do that, I would need a prescription to adjust your pressures. So, what does Mr. Porter do? He calls his Sleep M.D. and he explains the situation.

Mr. Porter's Sleep M.D. is one that believes that if he needs his settings changed, He needs to undergo Re-Titration in the PSG Lab.

Mr. Porter's Sleep M.D. discusses the feeling and explains that this is common, and they can usually just retitrate the settings but he would be required to come back to the lab. Mr. porter sort of groans inwardly because He does not feel like going back to the lab. He is set up for that very night.

So, he goes back, and undergoes the full night's titration, and they get his PAP therapy down to 14cmH2o however Mr. Porter really still does not feel that refreshed in the morning when the RT comes to disconnect him. So, that night, he gooes home and the DMe Provider decreases his PAP pressure to 14 and Mr. Porter goes to bed that night still feeling like the pressure is stilllll TOO HIGH.

Mr. Porter is getting rather irritated, but the next day, he calls the Sleep M.D. and the Sleep M.D. writes an order for RAMP to be added to the PAP Therapy machine which is a ResMed S9 CPAP as was previously stated. Mr. Porter DME Provider sets a Ramp down to 5cmH2o which will increase up to 14cmH2O over 20 minutes.

Mr. Porter goes to sleep that night, however, once his pressure has reached the prescribed 14cmH2O he is awakened, and for the rest of the night, he sleeps very poorly.

The next day, he calls the Sleep M.D. and he explains that he really needs his sleep.

The Sleep M.D. explains that he needs to retitrate him.

Mr. Porter is now getting upset, and just says, "Why is it ILLEGAL, for me to change my own pressures?"

I could adjust them myself, and possibly finally get much better sleep."

The Sleep M.D. explains to Mr. Porter that the only way that the appropriate PAP pressures could be set is according to what they see on the PSG results.

Mr. Porter is scheduled for a Re-Titration in the PSG Lab, but this time, they have other patients, so it is NOT FOR ANOTHER TWO WEEKS. Mr. in the mean time, uses his CPAP machine not sleeping for four nights, and then out of total exhaustion, he decides that until he is to undergo his Re-Titration, He's just not going to use his CPAP machine.

AHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH!!! Scares me just thinking about it. So he has the recurance of the morning headaches, and drinks a LOT of caffein, and his poor wife has to listen to his snoring, and finally she retires to the basement at night, and she can hear his snoring two floors up.

She lies downstairs on the air mattress listening to him, and she is thinking, "How is he still living? It sounds like there is a chain saw sawing his throat appart." She sleeps on an air mattress and then when it is time for his Re-Titration, Mr. Porter goes up to the hospital for his RE-TITRATION. He is determined to have some Hypopneas on a pressure of 14cmH2o and so He is titrated up to 15cmH2o and then, finally, the RT just switches him over to BiLevel with an IPAP of 15 and an EPAP of 10 and now the apneas are under control.

Mr. Porter however still feels like the Pressure is just too much.

The next few days at his house, he attempts to use what is now a ResMed VPAP AUTO, and still has a lack of good sleep.

He attempts this for two weeks, and then in exhaustion, he finally calls his Sleep M.D. and the Sleep M.D. says what? "Oh, I'll have to get you in for your next RE-TITRATION. Let me work on that." Mr. Porter has HAD IT. He hangs up the phone after saying, "No, ummm, NO, don't worry about that, I'm done." Before The Sleep M.D. can get a single word in, Mr. Porter has had it. He does what NOBODY should EVER DO. He does the sickening heart tearing thing that even thinking about makes me sick at my stomach. He in total frustration, Empties some excess water out of his humidifier, and then, He puts his VPAP machine in a closet DOWNSTAIRS. It is utterly sad, because Mr. Porter did some research on BiLevel and knew what it was for, and if he had only known that He could simply by pressing the SETUP KEY, and the Rotary knob together for around three seconds, GET INTO HIS OWN SETTING MENU, AND THEN, HE COULD ADJUST HIS OWN SETTINGS ON HIS VPAP MACHINE. But mr. Porter, did not know that. AND WHY? Because, both the DME Provider, and his Sleep Physician had convinced him that it was illegal to change his own PAP Therapy pressures.

Mr. Porter had no idea that the SD Card in his machine could have been inserted into his computer, and he could have seen his data. He had no idea that The thing about PAP Therapy Settings being changed by the PATIENT WAS ILLEGAL was JUST A HUGE GIE. He had NO IDEA that he had EVERY SINGLE RIGHT, to adjust his own Positive Airway Pressure Settings. Mr. Porter JUST DID NOT KNOW. So, Mr. Porter went on with uncontrolled Sleep Apnea, and his poor wife would retire downstairs in the basement in the room that had the closet that contained his VPAP machine, and there in that room, she slept on an air mattress, and then after two months, she put a cough down there because she did not like the feeling that sleeping on an air mattress gave her. Mr. Porter on the other hand, continued with severe headaches, and EDS. One yearlater, He ended up suffering a strmassive Acute Ischemic STROKE, and HE DIED. Mr. Porter Gave up on his PAP Therapy. Why? Because He had been lied to. He had been told that He could not rightfully adjust his own PAP settings. He had never heard of support like the Apnea Board, or freecpapadvice.com and freecpapadvice.com/forum where there was is now, and will ALWAYS BE, MUCH needed information. Mr. Porter when giving up on PAP therapy, also accepted the possible risks like Myocardial Infarction, Ischemic Stroke, Diabetes, Obesity, CAD, etc. Mr. Porter DIED due to the slow death that Sleep Apnea gave him.

My friends? It is absolutely SHAMEFUL, that this had to happen. The point is, If you hear somebody say that It is illegal to change your own PAP therapy settings, and that you ALWAYS, would require Re-Titrations for this, if you needed adjustments, you just need to tell them that They are most indescribably "WRONG." I personally believe that changing your own PAP Pressures is JUST FINE. You know why I believe that? BECAUSE IT IS THE TRUTH. I would love to figure out just where on earth this garbage about PAP pressure adjustments by the PAP Therapy user is Illegal garbage, and I would love to figure out, WHERE IN THE WORLD, his brain was when he thought about starting that LIE. Its people like him who really really deserve TO HAVE IT. I mean, People like that do nothing but LIE, when they say that and that is quite obvious.

You as the owner of your PAP Therapy machine, have EVERY RIGHT to do whatever you want to with, but the one thing you should not and I REPEAT, SHOULD AND MUST NOT, do with it is Give it up. PAP Therapy is Profoundly important, and if used can actually save LIVES. Sleep Apnea causes such destruction to patients, and not just that, It also effects bed partners, and the family of the patients who suffer from this HORRIBLE disorder. But it does not have to be like that. You should understand this. PAP Therapy if used EVERY SINGLE NIGHT, ALL NIGHT, can make your life much more enjoyable. MUCH MUCH more enjoyable. You deserve to know this stuff. YOU NEED TO KNOW THIS STUFF. YOU HAD BETTER, KNOW THIS STUFF. IT COULD VERY WELL SAVE YOUR LIFE. Thank you, and God bless.
04-29-2015 08:23 PM
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TyroneShoes Offline

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Post: #2
RE: The PAP Police, "THEY DO NOT EXIST!
Maybe cut back on the coffee.
04-29-2015 08:29 PM
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trailrider Offline

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Post: #3
RE: The PAP Police, "THEY DO NOT EXIST!
Myself, I think the Dr or DME should have explained ramp setting and EPR. Re-titration x5 is excessive.
04-29-2015 08:41 PM
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BiLevel48 Offline

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Post: #4
RE: The PAP Police, "THEY DO NOT EXIST!
(04-29-2015 08:41 PM)trailrider Wrote:  Myself, I think the Dr or DME should have explained ramp setting and EPR. Re-titration x5 is excessive.

AMEN. Amen to that. I totally, utterly AGREE WITH YOU. You are profoundly smart and I can tell you just from that reply there. Smile Smile Smile
04-29-2015 08:49 PM
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jcrpinto Offline

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Post: #5
RE: The PAP Police, "THEY DO NOT EXIST!
BiLevel48.
Congratulations for your text!!!
I totally, utterly AGREE WITH YOU
04-29-2015 10:03 PM
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BiLevel48 Offline

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Post: #6
RE: The PAP Police, "THEY DO NOT EXIST!
(04-29-2015 10:03 PM)jcrpinto Wrote:  BiLevel48.
Congratulations for your text!!!
I totally, utterly AGREE WITH YOU

Thank you very much. I still would like to know who had the idea of starting this stuff about the adjustment of a patient's settings by the patient is illegal. I wonder if somebody just made that up, or what. I think about that when I hear of patients that feel like they are sufficating, and are not getting enough pressure, and then they are told that changing their own PAP pressures would be a crime. I honestly think Its SAD. And somebody just had to make something up about the CPAP police. LOL.Guess what. They do NOT exist. The CPAP police DO NOT exist. Unless its a Policeman who uses a CPAP machine. LOL.
04-29-2015 10:10 PM
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Mark Douglas Offline

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Post: #7
RE: The PAP Police, "THEY DO NOT EXIST!
(04-29-2015 08:29 PM)TyroneShoes Wrote:  Maybe cut back on the coffee.

Dielaughing

I use my PAP machine nightly and I feel great!
Updated: Philips Respironics System One (60 Series)
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04-29-2015 10:43 PM
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Moriarty Offline

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Post: #8
RE: The PAP Police, "THEY DO NOT EXIST!
(04-29-2015 10:10 PM)BiLevel48 Wrote:  ...I still would like to know who had the idea of starting this stuff about the adjustment of a patient's settings by the patient is illegal. ...

I think what they 'mean' to say is "we don't allow you to adjust your own pressure"... to which the answer is fine... then just don't tell them.

As far as I can tell the 'Prescription' concept was adapted from other field in to CPAP to be a guide to machine setting and has been used by the insurance companies to be a necessity gate to permit reimbursment.

The DME's have in turn hijacked the the 'prescription' to safeguard their income stream.

Disclaimer: The 'Advisory Member' title is a Forum thing that I cannot change. I am not a doctor and my comments are purely my opinion or quote my personal experience. Regardless of my experience other readers mileage may vary.
04-30-2015 04:21 AM
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BiLevel48 Offline

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Post: #9
RE: The PAP Police, "THEY DO NOT EXIST!
(04-30-2015 04:21 AM)Moriarty Wrote:  
(04-29-2015 10:10 PM)BiLevel48 Wrote:  ...I still would like to know who had the idea of starting this stuff about the adjustment of a patient's settings by the patient is illegal. ...

I think what they 'mean' to say is "we don't allow you to adjust your own pressure"... to which the answer is fine... then just don't tell them.

As far as I can tell the 'Prescription' concept was adapted from other field in to CPAP to be a guide to machine setting and has been used by the insurance companies to be a necessity gate to permit reimbursment.

The DME's have in turn hijacked the the 'prescription' to safeguard their income stream.

Ohhhhhhhhh. OK. You know, I think that you might actually be correct in that regards. You know, that is interest what you have just said. I find it very helpful. Smile
04-30-2015 04:25 AM
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iSnore Offline

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Post: #10
RE: The PAP Police, "THEY DO NOT EXIST!
Mr. Porter was essentially given manual transmission cars that have to be completely stopped in order to change gears--and then told it was illegal to do so. For those who don't get the analogy, completely stopped means he would have to pause his sleep journey and wake up to adjust the pressures. His manual transmission was placed in a gear needed to get over hills along his route, but inappropriate for the majority of his journey, i.e. his night's sleep. Allowing Mr. Porter to change that gear before the journey might make him more comfortable, but might not get him over those hills. An automatic transmission could.

I have no illusion that automatic xPAP algorithms are optimal, or that one in the default range of 4-20 or 25 cm would be comfortable for the patient or would react fast enough from a low of 4 cm. And I recognize that a fixed pressure works better for some patients. But I think in this day and time, when we have automatic xPAPs with an alternate fixed pressure mode (like an automatic transmission with manual shifting capability), it's unconscionable lesser options are even sold, much less pushed by DMEs.

Edit to add: We on this forum are one-percenters--representing probably less than one percent of the xPAP-using population. Yet even here, not everyone has the knowledge or time to self-titrate, especially with a fixed pressure machine. While I don't believe the lie of illegality should be told, I do believe allowing the general population of users to adjust pressures will undoubtedly result in many, if not most, essentially untreated. For the one-percenters who have guidance from a forum of experienced users, both the ResMed and Respironics current models make it easy to access the clinician/provider menus by holding down the knob and button. What's really needed IMO is more education of doctors and DMEs.
(This post was last modified: 04-30-2015 06:36 AM by iSnore.)
04-30-2015 06:08 AM
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