Missing Clinician's Manual

[Amigo]

Hello, friends.

Since my last post, I have become the owner of a REMstar M Series Auto CPAP with A-Flex.

I obtained it through a DME, which resulted in no out-of-pocket expense, however, the bad news is that they refused to provide me with the Clinician's Manual since I didn't have the foresight to have that included on the prescription.

I thought of CPAP.com immediately, and am hoping that someone can provide the information I need to view/adjust the settings on this machine. After looking around for about an hour, I came up empty-handed.

If you prefer to respond via e-mail, you can send your reply to A_migo@hotmail.com.

Thanks.

[Guest]

It's meant for clinicians, that's why. The DME did the proper thing.

[alexcue]

It's meant for clinicians, that's why. The DME did the proper thing.

You know what's interesting is my DME provider included it in our travel bag. Everyone in the room had it. Mind u, it's the Respironics manual that's 1 page double sided but gives you how to access the clinicians settings. They really didn't seem to care.

[Wulfman]

Hello, friends.

Since my last post, I have become the owner of a REMstar M Series Auto CPAP with A-Flex.

I obtained it through a DME, which resulted in no out-of-pocket expense, however, the bad news is that they refused to provide me with the Clinician's Manual since I didn't have the foresight to have that included on the prescription.

I thought of CPAP.com immediately, and am hoping that someone can provide the information I need to view/adjust the settings on this machine. After looking around for about an hour, I came up empty-handed.

If you prefer to respond via e-mail, you can send your reply to A_migo@hotmail.com.

Thanks.

Check your e-mail shortly.......it's been sent.

Best wishes.

Den

[GuyK]

It's meant for clinicians, that's why. The DME did the proper thing.

I have a problem with this notion of "proper". The same DME may also have changed a setting preventing the user from reading efficacy data, with the idea that only compliance data is necessary.

In other words, I don't particularly care for a DME deciding what is proper for me and what isn't.

When my machine was dropped off, the DME-R/T was sorting through things included in the box. He moved the clinical guide CD into his pile, saying nothing more than "that's for us" (he obviously didn't need the manual, because he was setting up the machine for me without the benefit of looking everything up). When he was done, and ready to leave, I said "so what's on the CD?" and he said "the clinical manual -- do you want it?" I said yes. He couldn't have been nicer about it. I've since shared the clinical guide with several people on this forum.

Most of the DME clients (clients, as in the people paying the bills) probably don't care, or don't know the settings can be changed, so not everyone needs or wants the manual. But it certainly isn't "improper" to give someone a tool to help them figure out how to take charge of their own therapy.

Guy

[Guest]

it's so nice how YOU are determining whether people should be able to alter their prescribed settings. Nevermind whether someone could have lung capacity issues, approaching COPD, asthma or god knows what other type of respiratory insufficiency. It's so cool how you guys are facilitating that the world know how to alter their presciptions without consulting with their doctors. Geez, this sleep apnea treatment stuff is just so easy to understand --- after all it's just air down your throat. You're right! Take control of your own treatment! You know your body best.

[GuyK]

You're right! Take control of your own treatment!

That's absolutely right. I'm in charge. And if you were my "health care professional" and didn't respect that, I'd dump you in less time than you spent actually looking at my file, which was probably less than 30 seconds.

It is an "old school" attitude that says "I'm the professional and I'll tell you what you need to know, because after all I know what's best for you" in these days where the average office visit is ten minutes or less. If you don't like the way people handle their own treatment, then educate. There's some real confusion going on with respect to exactly whom is the paying client.

[hobbs]

it's so nice how YOU are determining whether people should be able to alter their prescribed settings. Nevermind whether someone could have lung capacity issues, approaching COPD, asthma or god knows what other type of respiratory insufficiency. It's so cool how you guys are facilitating that the world know how to alter their presciptions without consulting with their doctors. Geez, this sleep apnea treatment stuff is just so easy to understand --- after all it's just air down your throat. You're right! Take control of your own treatment! You know your body best.

I self medicated in the 60s, why stop now?
Wife was fitted with a Quattro mask yesterday by a great RT at Apria. He had it so tight there was ZERO movement of the bellows section of the mask. I guess I will tell to leave it that way since the RT/doctor always knows best.

[Kiralynx]

You're right! Take control of your own treatment! You know your body best.

My PCP missed that I had sleep apnea for over seven years. He's so focused on the fact that I'm fat that even losing 180 pounds didn't persuade him that my inability to sleep, and constantly being awakened by pain might have some other cause. OTOH, the first time I saw my oncologist, she asked if I had sleep apnea. I was startled because I thought the pain was interrupting my sleep, not that my interrupted sleep might be causing the pain. Since I had cancer, she figured we'd deal with it after the surgery -- but she did do labs to check for obesity hypoventilation. After my surgery, I was sent to a pain management doctor who sent me for a sleep study.

My PCP still has no clue about sleep apnea. My PCP also had no clue about symptoms for endometrial cancer. I diagnosed a problem and took myself to a gynecologist who diagnosed the cancer. The pain management doc understood the link between apnea and chronic pain, but not how to treat apnea.

The RT at the DME did know which machine would work best for my complex apnea, but had no idea how to observe what was going on. I bought the software and card reader, and monitored myself, then called her and told her what my observations were and what I thought needed to be done. She agreed, and got a modified prescription, and walked me through changing my own settings.

So yes, I really DO know my own body best. If I didn't, I'd be dying right now. Or dead, since my PCP also ignored my long-term digestive issues which have responded to a diet I found.

I believe in working WITH medical practitioners, but not if they're going to try to keep me ignorant.

[Wulfman]

it's so nice how YOU are determining whether people should be able to alter their prescribed settings. Nevermind whether someone could have lung capacity issues, approaching COPD, asthma or god knows what other type of respiratory insufficiency. It's so cool how you guys are facilitating that the world know how to alter their presciptions without consulting with their doctors. Geez, this sleep apnea treatment stuff is just so easy to understand --- after all it's just air down your throat. You're right! Take control of your own treatment! You know your body best.

Yep! And since the original poster is a long-time member of this forum and has previously used a Legacy model REMstar Auto for over 13000 hours, he KNOWS what he's doing.

But, in any case it's HIS therapy......not yours......soooooo........blow it out your "exhaust vent".

One of the reasons so many people come to these forums is because the medical professionals DON'T help those who want and need to know more about "this sleep apnea treatment stuff". They've failed their patients.


Den

[GuyK]

One of the reasons so many people come to these forums is because the medical professionals DON'T help those who want and need to know more about "this sleep apnea treatment stuff". They've failed their patients.

In fact, at my one (!) followup visit after starting *PAP therapy, my somnodoc saw a sheet of paper I printed out from a forum. He pointed to it and said "that's B.S." (he didn't look at the topic, or read what was printed, he just jumped to his conclusion).

My response was "just how am I supposed to learn?" which he didn't answer because he'd already moved on to the next topic.

It wouldn't be so bad if we were able to ask questions and learn along the way, but these "old school" doctors don't have time for that. They're too busy keeping us shrouded in ignorance.

I've been toying with the idea of going to one of his A.W.A.K.E. meetings just to see how things are handled there.

[boston]

I self medicated in the 60s, why stop now?

RFLMAO !!

After the week ive had, I needed that laugh !!

[boston]

it's so nice how YOU are determining whether people should be able to alter their prescribed settings. Nevermind whether someone could have lung capacity issues, approaching COPD, asthma or god knows what other type of respiratory insufficiency. It's so cool how you guys are facilitating that the world know how to alter their presciptions without consulting with their doctors. Geez, this sleep apnea treatment stuff is just so easy to understand --- after all it's just air down your throat. You're right! Take control of your own treatment! You know your body best.

if it wasnt for this forum, id have quit a long time ago. with this forums help, i have gotten my AHI to under 1 on a nightly basis.
MY DOCTOR DIDNT HELP
MY DME DIDNT HELP
MY RT DIDNT HELP
MY SLEEP LAB DIDNT HELP
and at this point,
I know more about this condition than they do
I know more about my machine than they do
I know more about my options than they do
DAMN RIGHT I ADJUSTED MY OWN SETTINGS, AND I'LL DO IT AGAIN

i as many others did came here because the system failed me.
NOBODY HAS A HIGHER INTEREST IN MY OWN WELL BEING THAN I DO !!!

[GuyK]

I know more about this condition than they do
I know more about my machine than they do
I know more about my options than they do
DAMN RIGHT I ADJUSTED MY OWN SETTINGS, AND I'LL DO IT AGAIN

For the record, I can't say the same in my own circumstance -- I doubt I know more than my somnodoc, the DME or the R/T -- but I am not stupid (which is the way some "health care professionals" choose to treat their clients). I can see that they are spending limited amounts of time looking at my actual case and making snap judgments that may or may not be true. I have no faith they are providing the best possible medical care they can, but I do have faith they are maximizing their billing to insurance companies as best they can.

I've also only adjusted my own settings three times: the first time was after my only followup with my somnodoc. He wrote an Rx that included a mask change and a settings change that didn't make sense to me (I was on 10/20, and was running a 95th percentile around 10.8 to 11.8, and was showing an AHI of around 5 maybe a little higher, on average -- the somnodoc wrote the Rx for 6/12). Rather than make two changes at the same time (mask and pressure), I started using the mask with my original setting (the R/T had already changed to the new spec'd setting). Two weeks later, I dropped it (to 6/16), which was my second change. At that time, I noticed that not only was I feeling like I was getting less air when falling asleep, I also saw that my AHI was a little higher than it had been. So, then I made my third change (to 10/15). Things are pretty stable now, with an average nightly pressure of about 11, and an AHI between 3 and 5. Because I was originally titrated at 15, I would try boosting min pressure above 10, but I've been experiencing some aerophagia. I may try an experiment, but not until I've been on my current settings for awhile.

So, overall, I'm ignoring my doctor's Rx (6/12), but I feel I'm making a more effective change, with supported reasoning. With more actual thought about what my current situation is. Unfortunately, the doctor is not providing that level of detail. In fact, he next wants to see me 11 months from now.

What I'd really like to do, after being on APAP for awhile, is to have another sleep study done. I'd like to have actual documentation that shows how effective my current course of treatment is going. Maybe that would happen after my 1-year appointment. But I'm actually thinking of finding a new sleep specialist to see if he or she is less "old school" than my present one.

[nobody]

It's meant for clinicians, that's why. The DME did the proper thing.