Clinician Locks on xPAPs

[VikingGnome]

If patients keep changing their own pressures without consulting doctor or RT, the manufacturers will have to put Clinician locks on the machines much like parental locks to keep kids out of domains or TV programs. I can see it already. The clinician will have a special SD key card that sets things up. Without the key card, patients can't fiddle with pressure settings, delays, etc.

I'm finding it appalling that there is such attitude on this board that "it's my machine. I'll do what I want." Since when have patients become experts in sleep medicine? You make changes at your own risk and potential death. For example, excessive Central Apneas (which cannot be proven by any home machine) can cause a person to become hypercapnic, severely hypoxic, and cause seizures and even death. So a self-proclaimed "expert" ups the pressure on machine thinking it will control leaks or decrease open airway apneas and instead causes own death.

Especially Bilevel machines. These are considered by the FDA as VENTILATORS. You think you're ready to go to somebody in intensive care on a ventilator and start changing the settings?

I have never in my life seen such a cavalier attitude about not following a doctor's prescription. An article I read yesterday said that 1 out 3 Americans don't ever fill medication prescriptions, 25% of primary care physicians are fed up with practice of medicine because so many patients don't follow treatment plans. Only 5% of doctors feel they are actually able to improve a patient's life. "A Fragile Nation" indicates that Americans generally think they are healthy when 67% are overweight or obese, 88% don't eat vegetables, and 1 in 4 Americans suffer from a severe chronic disease.

[zinkemomx2]

I don't think most people go in and change setting willy nilly. From what I've read on the boards (I read a LOT before every joining) people are tracking their sleep and making minor adjustments so the sleep they get is even better. They have the results to back up the changes.

Think about a diabetic. Don't they monitor their own blood sugar? They test frequently and adjust their insulin based on what they have eaten and how their body responded to said food. They aren't going to continue to take XX amount of insulin when they only need X are they? They follow up with their doctor and so do most xPAP patients.

[teknomom]

Doctors, RTs, NPs and DMEs are not gods. They see us once and forget us for a year. Mine have made so many mistakes and I have had to remind and correct them at every stage of the process. Advice here is not perfect and I wish some would not be so fast to dispense it, but we support each other and no one is forced to do anything. "Let the buyer beware" applies here but it applies to the medical community too. I'm the best judge of whose advice to take.

[49er]

It was through an "evil" internet board that I learned how to safely taper off of a psych med cocktail. If I had done it the way my psychiatrist wanted, which would have been way too fast, there is no doubt in my mind I would have suffered severe withdrawal symptoms and probably would not have been successful in getting off of the meds.

I shudder at the thought that I could still be on those meds which I feel may have worsened my apnea. I can't prove it just so people know I am not trying to make a scientific claim.

Anyway, I greatly appreciate the attitude of this board which treats me like an intelligent human being regarding my cpap treatment and doesn't treat doctors as gods which they aren't.

49er

[Guest]

Let's be honest here. Setting up a PAP machine is not rocket science. People who don't want patients to adjust their own machines are feeling superior for no reason at all.

[BlackSpinner]

If patients keep changing their own pressures without consulting doctor or RT, the manufacturers will have to put Clinician locks on the machines much like parental locks to keep kids out of domains or TV programs. I can see it already. The clinician will have a special SD key card that sets things up. Without the key card, patients can't fiddle with pressure settings, delays, etc.

We are not kids. We are responsible adults. It is air and most machines don't have enough pressure to inflate a balloon. I have watch my mother check and adjust her insulin for over 20 years. I do that now. I could kill people with that pen but I am not competent to adjust my air pressure? Give me a break! I drive 2 tons of steel at 60 miles per hour down the road and I am trusted to stop at a red light. But I can't be trusted to figure out how to work a reversed vacuum cleaner?

I'm finding it appalling that there is such attitude on this board that "it's my machine. I'll do what I want." Since when have patients become experts in sleep medicine? You make changes at your own risk and potential death. For example, excessive Central Apneas (which cannot be proven by any home machine) can cause a person to become hypercapnic, severely hypoxic, and cause seizures and even death. So a self-proclaimed "expert" ups the pressure on machine thinking it will control leaks or decrease open airway apneas and instead causes own death.

Go and do some research. It has been proven that even people without data can find their right level.

Especially Bilevel machines. These are considered by the FDA as VENTILATORS. You think you're ready to go to somebody in intensive care on a ventilator and start changing the settings?
I have never in my life seen such a cavalier attitude about not following a doctor's prescription. An article I read yesterday said that 1 out 3 Americans don't ever fill medication prescriptions, 25% of primary care physicians are fed up with practice of medicine because so many patients don't follow treatment plans. Only 5% of doctors feel they are actually able to improve a patient's life. "A Fragile Nation" indicates that Americans generally think they are healthy when 67% are overweight or obese, 88% don't eat vegetables, and 1 in 4 Americans suffer from a severe chronic disease.

And I have never seen so many incompetent people working in a branch of health care.

[HoseCrusher]

If patients keep changing their own pressures without consulting doctor or RT, the manufacturers will have to put Clinician locks on the machines much like parental locks to keep kids out of domains or TV programs. I can see it already. The clinician will have a special SD key card that sets things up. Without the key card, patients can't fiddle with pressure settings, delays, etc.

I'm finding it appalling that there is such attitude on this board that "it's my machine. I'll do what I want." Since when have patients become experts in sleep medicine? You make changes at your own risk and potential death. For example, excessive Central Apneas (which cannot be proven by any home machine) can cause a person to become hypercapnic, severely hypoxic, and cause seizures and even death. So a self-proclaimed "expert" ups the pressure on machine thinking it will control leaks or decrease open airway apneas and instead causes own death.

Especially Bilevel machines. These are considered by the FDA as VENTILATORS. You think you're ready to go to somebody in intensive care on a ventilator and start changing the settings?

I have never in my life seen such a cavalier attitude about not following a doctor's prescription. An article I read yesterday said that 1 out 3 Americans don't ever fill medication prescriptions, 25% of primary care physicians are fed up with practice of medicine because so many patients don't follow treatment plans. Only 5% of doctors feel they are actually able to improve a patient's life. "A Fragile Nation" indicates that Americans generally think they are healthy when 67% are overweight or obese, 88% don't eat vegetables, and 1 in 4 Americans suffer from a severe chronic disease.

You've got to be kidding...

The sleep doctor and his other professionals think so much of helping me that they have decided that there is no need to have any follow up. I was basically thrown out on my own after the sleep study and being presented with an xPAP machine.

My prescription calls for a pressure of 5 - 19 cm H2O. As long as I stay within that range, I guess I am honoring the doctors prescription. However, this range does not provide optimum results for me, so I have adjusted the pressure to keep the machine from interfering with my sleep. If the sleep doctor ever decides to get in touch with me, I am sure he will agree with my settings. I have a lot of data to support my settings and my data goes beyond simple flow data from the machine.

If you want to beat a drum, you need to inform the sleep industry that they should be responsive and take a greater interest in their patients. If they paid more attention to educating about sleep disorders and were more responsive and timely in answering questions, we would spend more time dissecting the SuperBowl and wouldn't need to go into the details of how to adjust our machines to achieve optimum results.

After all of that let me also say that you are welcome to sit in fear of taking charge of your therapy. If things go south for you just remember that we are here to try and work the kinks out. Many do this in a partnership with their doctors, but others like me have been left out on our own. Fortunately for me, this group is quick to assess things and offers excellent support.

[idamtnboy]

If patients keep changing their own pressures without consulting doctor or RT, the manufacturers will have to put Clinician locks on the machines much like parental locks to keep kids out of domains or TV programs. I can see it already. The clinician will have a special SD key card that sets things up. Without the key card, patients can't fiddle with pressure settings, delays, etc.

I'm finding it appalling that there is such attitude on this board that "it's my machine. I'll do what I want." Since when have patients become experts in sleep medicine? You make changes at your own risk and potential death. For example, excessive Central Apneas (which cannot be proven by any home machine) can cause a person to become hypercapnic, severely hypoxic, and cause seizures and even death. So a self-proclaimed "expert" ups the pressure on machine thinking it will control leaks or decrease open airway apneas and instead causes own death.

Especially Bilevel machines. These are considered by the FDA as VENTILATORS. You think you're ready to go to somebody in intensive care on a ventilator and start changing the settings?

I have never in my life seen such a cavalier attitude about not following a doctor's prescription. An article I read yesterday said that 1 out 3 Americans don't ever fill medication prescriptions, 25% of primary care physicians are fed up with practice of medicine because so many patients don't follow treatment plans. Only 5% of doctors feel they are actually able to improve a patient's life. "A Fragile Nation" indicates that Americans generally think they are healthy when 67% are overweight or obese, 88% don't eat vegetables, and 1 in 4 Americans suffer from a severe chronic disease.

Couple of questions my dear viking. What is your experience, training, and occupation that gives you license to preach to us this way?

Second, how do you reconcile the attitude you exhibit above with the attitude and questions you pose in this topic? viewtopic/t74189/viewtopic.php?f=1&t=73 ... 31#p679631

If I remember correctly, you are quite new to CPAP therapy. After you have had a couple of encounters with YOUR sleep specialist, and been given the short shrift about the particulars of what are the best CPAP settings for YOUR body, and been told come back in a year, if you are told that at all, and basically just ignored, let's just see how adamant you feel about the things you espouse above.

[cowlypso]

Clearly, I should be locked out of my machine. It's reckless and careless for me to change my own settings. Especially when I had a titrated pressure of 8, which the doctor then changed to 10 after two weeks. How dare I lower my pressure to 8.5 without consulting her? I'm so irresponsible.

[Elle]

I saw my "sleep doctor" in the summer of 2006. He sits in his chair and reads the sleep study report, writes the prescription and says "don't let the door hit you on your way out". The machine supplier wants to see me when my insurer will pay for new gear. I was due for a new machine in the fall and sure enough I heard from the supplier telling me mine was faulty (hadn't seen it) and begrudgingly sold me an S9....where I discovered that I had been at the wrong pressure for years.

cpaptalk got me on the right path.

[LittleRedTruck]

This is a person who joined just 5 days ago and preaching to us. this person obviously has knowledge about the equipment and health issues and terminology. I suspect a troll among us. Perhaps LTTS, the great defender of the abused DME's, in a new dress, LOL

[RationalEntropy]

I use data, and make minor tweaks, as I assume many do. My AHI is NOW < 2 (yes, almost exclusively hypopneas, with maybe a central per week), and feel subjectively better. Untreated I only had hypopneas, then after failure to tolerate cpap, and bipap I was prescribed an ASV (no need for extra oxygen). ASVs are something that I am convinced that most Dr.s and DMEs are not so familiar with, and yes a little reading can fix that. Since they are not common I would argue that doctors and techs focus on cpaps and bilevels. Thankfully I have a receptive doctor and an outstanding tech, who suffers from narcolepsy and severe sleep apnea. I was quite surprised when we spoke at length and I obtained an ASV (yes, she downloaded my data, and sent it to the insurance company with a letter).

Either way, even if a clinician lock is to be placed on there, I can argue that I did better with certain protocols, and use the AHI of the machine to argue my point. If it is argued that the machine is insufficient in doing such, could better sensors be made to measure flow, resistance, etc? Also, I'm sure that some renegade programmer with sufficient information can further optimize algorithms to make units and patients all but self-sufficient if such measures are taken. Hopefully it will never come to that, but I'm a believer that competition and genuine need for ingenuity is critical.

Whether this person is a troll or not, is to be seen definitely, and I can understand some concerns, but also we can make informed decisions given scholarly articles with empirical data, and can create our own informal case studies, and act as good feedback loops in control theory. Doctors are people, too, and sometimes time ticks away while our brains seem like they are being eroded by fragmented sleep and hypoxia. It doesn't always rob the ability to reason, but it can slow it down. I, just as many of my compatriots here wish to make informed decisions to optimize treatment, and wish to do so usually in minimizing the risk to reward ratio. Some of them probably cannot find second opinions, and thus consult papers, and make minor tweaks as their next action.

Also, I would like to mention that comparing apnea patients adjusting their own treatment consciously to walking up to someone treated in ICU is merely a case of dragging the red herring, and missing the point. Given the states of consciousness and a person in ICU giving feedback to a system (assuming unconsciousness).

/end

[McSleepy]

I must say that I am truly concerned about setting up my machine properly myself. I do worry that my bi-level CPAP is acting like a ventilator (especially the way I have it set up) and might be causing central apneas. Although, not quite to the point of actually waking up dead one sunny morning but rather making my apnea worse, including increasing the dependence on CPAP to the point of addiction, and so on (we have discussed this many times already on this board). My data, though, has been consistently showing lack of apnea events (AHI <1), so as much I can trust it, it appears I am doing fine, so far.

But, you know what, I have seen multiple sleep doctors - all thoroughly chosen for their reputation of being the best sleep doctors in the area (covering two different states), and the result - none of them were able to do anything that made any sense or could help me in any way. If there are any good sleep doctors (and, yes, my condition is a little more complicated than the "classic" case), I'd sure like to know; but I am tired of seeking them out only to be disappointed in how they go about understanding my condition. For now, the only use of sleep doctors I have had, and this seems to be rather widespread, is to get a prescription for a good CPAP machine. And even that, as we have seen on multiple other occasions, hasn't been easy.

The problem is that the sleep medicine overall is an undeveloped area of medicine and there is a great deal of conflicting forces, pulling it in opposite directions: one one hand, the usual protective forces (liability, commercial interests, some genuine concern); on the other, the pressure from patients who are able to improve the quality of life using available technologies. The result - some good knowledge combined with machines that are adequate for most apnea cases end up helping thousands of patients.

I am a scientist and an engineer and I have some very good ideas on how CPAP designs can be significantly improved - from start (electro-mechanical design) to finish (firmware and software). But I have no way to even provide viable feedback to the manufacturers. I even tried to get a job at one of them (I live near one of the Covidien R&D centers), to no avail. And I am pretty sure I can make some serious contributions. But acres of red tape surely stand between my good intentions and reality (legal, administrative, business constraints.)

All we can do is make the best of it, and that's what most of us here are doing.
McSleepy

[VikingGnome]

No, I am not new to CPAP. I've been on CPAP for 12 years. I was still using my ResMed Sullivan V Elite until a week ago when I was prescribed an S9. My first sleep doc 12 years ago was a real JERK. He prescribed a CPAP machine at 10 because I had an AHI of 25.4 which he called "mild sleep apnea". But he tells me he does not believe my excessive daytime sleepiness has anything to do with Sleep Apnea--that it's my medication. I never saw him again but used my CPAP faithfully EVERY night for 12 years. I was never told I needed any follow-up.

When excessive daytime sleepiness returned six months ago, I went to a new sleep clinic. The director was a very competent and compassionate female. She measured my neck and looked into my throat; noted my deviated nasal septum (something the Jerk didn't do 12 years before). We discussed surgery options. She then ordered a PSG. My AHI was 66.7 (severe Sleep Apnea). Over the 12 years of using CPAP at 10, my sleep apnea had become severe.

My new doctor's policy is followup at 2 months, 6 months, and then 12 months. Annually thereafter, I don't know what kind of sleep doctors the rest of you are seeing but follow-up is absolutely necessary and giving a patient a machine with a "see ya in a year" is negligent practice of sleep medicine.

I have a Ph.D. in Bioinformatics and a Masters in Computer Science. I know a thing or two about medical gadgets and have designed and built interfaces between stand-alone devices and computers to automatically capture the data.

You all misunderstood if you thought I was "preaching" to you. I was inserting some cautionary words. Misuse of medical equipment can and does kill. A newbie CPAP user with just a month under his belt is wanting to adjust his machine. You all jump in and give medical advice with the exception of one user that appropriately pointed out that he was still working out mask, hose, sleep position issues and that it might be premature to think about adjusting pressure.

Pugsy has over 8200 posts which could be viewed as practicing medicine without a license.

Before you quickly tell somebody everything you know, take into consideration the posters circumstances. How long has the person been on treatment? Has all other methods of making things better been tried? Has the person contacted the DME or doctor? All he really needed to do was take the machine with his data to the DME and point out that his prescription was for 10-15 but it appears that the lower number is 4. The machine would have been adjusted. Instead, you all jump in a tell him how to fix it himself, totally bypassing the medical professional involvement.

I have as much right to air my views on this forum as anyone else even if is contrary to what y'all think. Yes, doctors are human and make mistakes. There are also doctors that are in it solely for the money and have little consideration or compassion for the patient. But that does not mean that patients have the same expertise and know more than the sleep doctor. Be reasonable in dispensing your "advice" and don't step over the line and practice medicine. Interpreting other people sleep waves and numbers and then telling them what they should do IS stepping over the line.

Feel free to tell others what you THINK the waveforms and numbers might mean. But then stop and remember that you cannot and diagnose and prescribe to others.

[Janknitz]

Under the OP's theory of nanny protectionism, we should all go to the doctor's office three times a day to be dispensed our medication one pill at a time because if left on our own we might take too much or too little and that's dangerous! Since some people take their meds improperly, we should all be tightly controlled. Maybe the OP imagines locked electronic pill dispensers for us too. (They already have them for people with dementia, BTW, and they don't work--smart people with dementia just remove the batteries I've seen it several times. ).

There's a lot more danger in using a bottle of Tylenol improperly (liver damage!) than adjusting a CPAP to optimize treatment. CPAPs are not dangerous unless you have a very serious and rare lung condition.

We are adults who are ultimately responsible for ourselves. We are not idiots, and this is not rocket science, it's air. Informed engaged patients use their CPAPs and get the best benefit from treeatment. People who feel shut out and have no control in their own lives check out, leave their machine in the closet, and suffer great harm from lack of treatment.

Any manufacturer goes that far to lock me out of my own care is. OT getting a cent if my money (directly or from my insurer) to pay for their equipment.