Replies to This Discussion

Permalink Reply by susan mccord on August 26, 2009 at 10:39pm

Lol "Quit smiling, Judy!!" , he said.........! :-)

Rock Hinkle said:

Look at any country out there. there is profit in every kind of medicine be it socialized or capitalistic. The people that do these jobs have to be allowed to make a living. Should I not be allowed to support my family? Judy you have no problem changing your pressure when you want. I personally did not say that anyone was not smart enough to be able to do it. I said that not everyone was ready at first. The people that are can figure it our do one way or another. Through mechanicl prowess, curiousity , by constantly nagging people about it on sites like this. Judy you posted this so that you could entertain yourself today. Quit smiling!

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Permalink Reply by susan mccord on August 26, 2009 at 11:14pm

Re: self-titrating--I'm just now feeling comfortable with CPAP and sleeping somewhat better. I KNOW I'm not ready for the responsibility of titrating my #'s!! I scares me to no end. I'm not at all sure it was set correctly in the first place, and I'll see a sleep MD 9/1 for the first time since 2 sleep studies in June!! Also FYI, at my request, my DME guy printed out every single thing recorded on that data card, including all leak graphs, and a bunch of other stuff I have no clue about, so I can take it to the MD on the 1st. My point being, anyone should be able to access ALL of this med/testing record stuff, at any time, with NO opposition of any kind. How else can the MD know what's going on? Call me stupid, but when I hear about people not having their own info, or being told no, or being given only partial records (as I was initially) it just burns me up. I realize I'm lucky with my DME guy 'cause I have no clue what to ask for--same with SS Clinic--I just told them I wanted EVERYTHING IN THE CHART and EVERY SINGLE REPORT ABOUT ANYTHING that they have. Don't let anyone tell you no, or that they don't have time, or that they'll have to speak with their supervisor, or that they'll "mail them" to you. When we're just starting tx, we shouldn't be expected to be able to take charge of conveying info to the MD re: dx and tx to date, if we don't have something for him/her to go by.....I'm not sure what started this rant--something I read here just now--but honestly, some of this crap people have to put up with has to stop. LOL YOU GUYS!! I just went back through most of these thread posts to try and find what got me going. There's so much going on that I have NO IDEA now!!! Said it before, sayin' it again, this site is smokin'!!!!!!!!!!!!!!!!!!!!!!!! Gotta love everybody having a voice here......if everything I just said is meaningless, just pass on by and smile at me for being a DORK!!!!!

Susan McCord :-)

j n k said:

I see your point, Judy. And I think a lot of people would find 4 cm too low and find that feeling of suffocation to be enough to give up on therapy, so I would raise that 4 cm to at least 6 every time.

But the idea behind auto-titrating is to let them auto-titrate. You get better therapy in a restricted range, yes, but then again many get better therapy at a straight pressure.

My only point, I guess, is that circumstances vary and there are a lot of ways to use the machines. Some ways aren't optimal, but they still make some sense, depending on the goal of the sleep doc in arranging for the loaner.

Problem is that us self-tweakers are now used to getting better therapy from the machines than even the manufacturers themselves are aware the machines are capable of giving. Restricting the range of an auto is an example of that, I think.

Judy said:

Yeah, but, jnk!!! ESPECIALLY for someone STARTING out on CPAP for the first time, I DON'T think 4-20 cms spread is at all wise. Large leaks so common to newbies can run up the needed pressure and give false or at least misleading pressure data. I sure haven't PERSONALLY run into very many sleep DOCTORS or RRTs that paid diddley-squat attention to my Leak data as they scripted, made, pressure changes. DUH. I went from a IPAP 13, EPAP 8 pressure need (w/high leaks) to an IPAP 10, EPAP 5 pressure need based solely on getting my Leak under control. TWO IN-LAB titrations I might add.

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Permalink Reply by susan mccord on August 26, 2009 at 11:21pm

Judy, you crotchety ol' broad!!! I see now that you're the one who started all this debating. Bet you're not bored NOW, are 'ya??!!!! Cracks me up the way you can get folks going sometimes!!!!
Never thought I'd just plain enjoy watching people yak about their 27 different opinions, but it's pretty much big fun on here sometimes..... Still LOL........

Susan McCord :-p)

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Permalink Reply by Marie Davis on September 8, 2009 at 12:34am

AMEN!!!! This seems to be the newest way for someone to get a buck from us!! I finally got a manual??? but it still seems like I can;t adjust my pressure.....I am a little worried about upcoming allergy season and I don't have $50 bucks to switch it again!! I agree that at the beginning I didn't have the knowledge to set etc. maybe we could have that ability after a certain time frame?? The last time I called the sleep clinic it took them 3 days to have someone call me!!! This is what discourages many from not using their machine at all!!! NO ONE has ever followed up with me about ANYTHING!!!! for over 7 months!!!!!!

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Permalink Reply by susan mccord on September 8, 2009 at 2:03am

Gotta say, I agree with Rock about the "readiness" portion of this conversation. I'm by far not a sleep professional. However, I have no doubt whatsoever that I'm intelligent enough to learn how to titrate this generator. I'm certain it ain't rocket science. I haven't even LOOKED at it yet. I have one of those "dream world" DME techs who apparently falls into the "not out there" category someone was talking about. I can assure you, he exists, and he's as consistent with his care and teaching techniques as anyone I've ever known. He can trick out that machine, diagnose and fix that machine in no time flat. He tells me exactly what he's doing and why. I don't even pay attention because I'M NOT READY TO KNOW ALL THAT YET! Not that I couldn't, I just don't want the responsibility this soon. It's all I can manage to keep persistently working with the damn CPAP thing!!! When I ever get to the place where I want to learn, I jollly well WILL learn. Until then I'm perfectly content to let someone else do it, even though I think it needs adjusting. When I saw my new sleep doc recently, who by the way, I like a LOT, he agreed that it needed adjusting. However, he Rx'd it up only 1 point. I asked him if he was going to put a range on it, because I've heard so many people on here talking about ranges. He said no, that he wanted to take it slowly and see how I do. That he doesn't want to push it higher than necessary. I was surprised because it seems so common, but that's what he said. I hadn't talked with him at all about self-titrating. He just said to try it, be consistent, keep a sleep diary to bring back in 3 months, and to call in the meantime if I had any concerns or didn't feel comfortable with it. Soooo, hey, that works for me 'cause I wouldn't be messing with it anyway!!! NOT READY YET!!!

It sure is fun, though, watching you pro guys mixing it up on here! I get the biggest charge out of all your bantering!!!! So please continue to enjoy yourselves, if nothing else than for my personal amusement. After all, it IS all about me, is it not? (What's that you say? "Go away, idiot"??) Why, forevermore, whatever do you mean?? ,,,,,,,:LMAO !!!,,,,, Love 'ya, guys!! You're the best!

Susan McCord :-)

Rock Hinkle said:

Look at any country out there. there is profit in every kind of medicine be it socialized or capitalistic. The people that do these jobs have to be allowed to make a living. Should I not be allowed to support my family? Judy you have no problem changing your pressure when you want. I personally did not say that anyone was not smart enough to be able to do it. I said that not everyone was ready at first. The people that are can figure it our do one way or another. Through mechanicl prowess, curiousity , by constantly nagging people about it on sites like this. Judy you posted this so that you could entertain yourself today. Quit smiling!

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Permalink Reply by Leslie Scott on September 13, 2009 at 3:30am

Because there is a fine line we walk between treating OSA and causing central apneas. When you have a self titrating machine, it is adjusting with knowledge. When a patient is just adjusting a setting without understanding everything that is going on, it can actually cause more problems than it helps.

I do think that a patient should be able to access their information, but they do need to go through the doctor to make changes. As a patient and a respiratory therapist/Polysomnogram tech, I know both sides how frustrating it can be, but there really are reasons for why they do things the way they do them.

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Permalink Reply by Judy on September 13, 2009 at 10:44am

Curt said:
The patient is given the machine & mask to take home and the pressure settings are the "infamous" 6-20 cent. of H2o minimum / maximum settings. After one week, you come back in and download the weeks data & the "RT" adjusts the settings (titration?) according to the ResMed furnished handbook and you go home for another week of trials. The perfect set up? Probably not, but as I said before, it gets folks at least to recognize they may have a life threatening condition & gets the ball rolling as far as available non hospital provided advice / treatment.

IF there is a valid reason one can NOT undergo an in-lab sleep evaluation or in-lab titration then the situation Curt has described sounds almost ideal. Especially the "after one week" for the first data download. This put up w/it for 3 months on a compliance data only (or even fully data capable) C or APAP is ridiculous!

I'm not saying that at one week the patient has the mask fit and sleeping all night w/the PAP down pat, but what I AM saying is that ONE WEEK is long enough to have been struggling w/a PAP and mask for the first time w/o some further contact, guidance, adjustment, mask exchange or refit, etc. And despite all the first few night "battles" the APAP data SHOULD be enough to narrow the pressure range a little better, not precisely yet, but a heck of a whole lot better making it EASIER for the patient to at least be willing to give PAP more time to work its "magic" and to give the patient some HOPE that, yeah, this just MIGHT work for me.

Even one month of struggling can be enough for a patient to say "to h*ll with this!" One week at a time UNTIL the patient is at least comfortable enough to continue for a month, then for 3 months as long as there are still problems UNTIL such time as they are doing well w/their xPAP and mask "buddies".

AND that shouldn't have to mean expensive continued sleep doctor appointments.

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