Clinician Locks on xPAPs

[reitzell]

OP,

I know this is a little off topic, but how well do you think your Xpap therapy is going?

Sleeping well?

Just wondering,
Rob

[BlackSpinner]

Walking in to a hospital is far more dangerous to anyones health then adjust cpap pressure. So is crossing the street. So is eating and i don't see nutritionists locking down fridges or stores!

[49er]

Walking in to a hospital is far more dangerous to anyones health then adjust cpap pressure. So is crossing the street. So is eating and i don't see nutritionists locking down fridges or stores!

I am getting off topic but this article BlackSpinner, perfectly proves your point about hospitals being dangerous.

http://www.nationaljournal.com/magazine ... rch&page=1

[VikingGnome]

OP,

I know this is a little off topic, but how well do you think your Xpap therapy is going?

Sleeping well?

Just wondering,
Rob

Thanks for asking. I've been on the S9 ESCAPE at pressure 15 for one week now. I was able to go to church and didn't fall asleep. I haven't felt the strong desire to take a nap both morning and afternoon. I don't fall asleep during TV shows. AND I haven't fallen asleep face first into my bowl of Cheerios like I did a month ago. So I'd say my CPAP therapy is going along very well after just one week. Since I've been on CPAP for 12 years, I didn't need to get used to mask, hose, and all those other issues like new users.

My S9 ELITE is supposed to be arriving today. I very much want to understand what is going on with my sleep. But I'm not likely to change any pressures. Since my sleep study showed my oxygen saturation at 90% without CPAP and only 92% with CPAP, I am concerned about hypoxia. I purchased a CMS-50D Plus so I can monitor my O2 levels. I have asthma and that may be the cause of lower sats. But I do want to monitor that. At some point, I may need to add O2 to my CPAP therapy.

[jnk]

Consider the question in the light of the fact that an APAP set wide open up to 20 cm is not considered a danger to any plain-vanilla-OSA patient.

Consider the question in the light of a comparison to insulin users monitoring their own therapy.

There is plenty of documentation of the deaths that occur from complications stemming from the use of aspirin and other OTC medications, yet is anyone suggesting that those medications should come with "Clinician Locks"? Where is the documentation of the dangers of OSA patients adjusting their pressure for lowest AHI?

If medical people were doing their jobs, patients wouldn't have to get together on boards and figure out how to stay alive. The solution isn't to hide the information that can save lives.

We don't tell people to ignore their doctors. We tell people what to do when their doctors ignore them.

Pugsy does good work here. And she's careful.

She is helpful to her fellow human beings, unlike those who come to this board to use ridiculous (in my opinion) scare-tactics to imply to patients that finding the best pressure to treat their condition is more dangerous than life-saving. To me, that's the sort of nonsense that kills. At least, that is my opinion as a patient, one who considers my doc a paid consultant, not my daddy.

No doc has the power to force an Rx on me. The patient has rights. If I have the right to the choice to refuse the treatment completely, then I have the right to modify my dose of it. That is the law.

[BlackSpinner]

Walking in to a hospital is far more dangerous to anyones health then adjust cpap pressure. So is crossing the street. So is eating and i don't see nutritionists locking down fridges or stores!

I am getting off topic but this article BlackSpinner, perfectly proves your point about hospitals being dangerous.

http://www.nationaljournal.com/magazine ... rch&page=1

I am far too familiar due to my mothers condition. She caught an almost un treatable UTI at the hospital last year. It really makes looking after her very difficult and has caused my sister to be come sick from looking after her. A friend of mine's father died this year due to the same kind of infection.

It really makes all this blithering about how dangerous it is to change you cpap pressure total nonsense. How many people have died from changing their pressure versus how many have died from inadequate or no use of a cpap machine because no one was there for them to help them adjust?

[49er]

Black Spinner, I am so sorry to hear about the situation you described. I have a similar tale regarding a relative when she was alive who almost died due to malpractice in the hospital. And yes, it included an infection as a parting gift.

49er

[DocWeezy]

All I can say is that I'm glad I'm a bad patient! I know that I won't go for many years with subpar treatment for my apnea because I check my data regularly and make adjustments when necessary. I also think it is silly to try to keep OSA patients in the dark about their condition and/or treatment. I wouldn't have been able to stick it out and find my pressure sweet spot without the help and suggestions from people on this board.

BTW, no one here is practicing medicine without a license. We are all adults and we are free to offer suggestions--and the person receiving the suggestion is free to either follow it or disregard it. That's what it means to be a responsible adult. We do NOT need a nanny protecting us from our xpap machines.

I think this way even though I have a very good sleep doc...he even encouraged me to adjust my own pressures. When I asked him "what would be a dangerous pressure?" he laughed and said that even when my apap is set at the maximum, it's no more pressure than a strong breeze through a window.

Bottom line: we're not stupid and we don't need a nanny.

Weezy

[idamtnboy]

I say let's give Viking a little bit of a break. She did pretty well answer my questions. Let's not dismiss her cautions out of hand without giving them some consideration.

Viking, I don't believe we have ever willy-nilly told anyone to change their xPAP settings. If you search back through the topics you will find we have suggested to some users that they make a pressure change, but we've told them no more than 1 cm at a time, and leave it there for at least a week to see what the effect is.

Viking, is it possible your outburst is a result of anger and frustration at realizing you went 12 years of inadequate medical oversight only to learn things had changed for the worse and you had no way of knowing? That you suffered needlessly due that inadequate oversight?

Even though you are not new to CPAP take a read through the paper linked to in the topic in the announcement box, "Especially for newly diagnosed - Dealing with Change." It's possible some of the reactions discussed in it apply to your situation.

[thud]

DITTO PUGSY

[billbolton]

Be reasonable in dispensing your "advice".....

Advice which you could well follow yourself, it seems

[Gerald?]

Perhaps you would be happier over at the "other" apnea board where the cpap police reside and lowly cpap users aren't considered to be intelligent enough to have an active say in their therapy because we are too stupid to understand it and doctors walk on water and never ever screw up.
I bet you would fit right in over there. If you stay here just wait till you see someone try to help someone that is broke with no insurance try to self diagnose or self treat.

You won't find much support for your views here at cpaptalk.com. We are the black sheep of the sleep apnea family. If you don't like it here please feel free to go chat with the folks that think like you do because you sure won't find many like minded souls here.
This group of people will agree with your opinion. You will fit right in. It is highly moderated and rules out the wazoo. http://www.apneasupport.org/sleep-apnea ... m-f27.html

Pugsy, what do you think the other board would say about Sleepyhead?

[DoriC]

Viking, Question, in 12 years why did it never occur to you,even if you weren't told, to make a Dr's followup appointment considering that you're using prescribed medical equipment? Weren't you the least bit "curious" to know how your treatment was going? How's it going now? And now that you fought so hard to get a data-capbable machine so you can see your AHI, will you really wait if you're having events until your next Dr visit to have your pressure tweaked if necessary? Our DME set my husband's auto machine to 5-18, his titration was 13. Because I became educated on this amazing forum and because my husband was struggling with his therapy, I knew enough to tighten his range closer to his titration. This was done with small tweaks over time as per the experts' advice and after they made sure that my husband had no other underlying medical conditions. When the Dr looked at my reports after a month, he gave me a "thumbs up", "good job", "I'll see you in a year" and was out the door. Our Primary only in passing will ask how cpap therapy is going because he knows he's not knowledgeable enough and that I'm on top of things. In 3 1/2 years we've had some medical issues and cpap therapy has gone haywire several times, but thanks to the pros who came before and now especially to Pugsy who still teaches me something every day,we're back on track and my husband is doing well again. This was way too long!

[chunkyfrog]

It really sucks when you can't sleep, have a headache, and are bored as heck!

[Pugsy]

Pugsy, what do you think the other board would say about Sleepyhead?

You can ask Mark what they finally did. When he first mentioned it over at the "other" board he got his post pulled and a nasty gram about promoting patient messing with settings. When he explained it was for looking and there wasn't anything in there that would allow someone to change their pressure they said that they would "think" about it..then supposedly said it was okay and then Mark was blocked from responding to the questions about SleepyHead. After that I don't know what happened. I don't know if the Gestapo eased up or not. I don't go over there at all.