Asking doctor re: self-monitoring

Having hung around here for a couple of weeks, I see people talking about (borrowing heavily from Wulfman from another thread) what their machine settings are and how to change them, getting a copy of their sleep study, using software for monitoring therapy. Is it customary for one's sleep doctor to let you know that such things exist, are accessible, etc.? Is there a point where the doctor offers this information and make these suggestions? For example, maybe the machine I'm renting doesn't come with these options and once I purchase it, Apria can rig it so I can do whatnot with software? It's been 2 months and the only way I know about this stuff is through this forum. But it seems pretty essential. My sleep doctor is very pressured for time and has low tolerance for my many questions. But it's my right to participate to the furthest extent possible this process. I'm seeing her on Weds. and would like to know:

1) Is it appropriate to ask her about these things at this point or am I obligated to wait until the end of my 3-month compliance period?

2) Can you all recommend specific questions I could ask her right now? Here's where I am at, basically: I've rigged things so that the mask is relatively comfortable, but I only sleep 1-2 hours at a time. I have met my 4 hours exactly once in about 7 weeks of trying. I'm awaiting correct-sized headgear from Apria. Still exhausted.

If I have a list of questions, I can both meet my need to do everything I can to help myself be successful in using this machine to become well-rested and her need to get me out of her office within a half hour.

All this is a process of self-education. Do not expect the pros to help you with it. You need to take charge and be proactive for yourself.

napstress wrote:Having hung around here for a couple of weeks, I see people talking about (borrowing heavily from Wulfman from another thread) what their machine settings are and how to change them, getting a copy of their sleep study, using software for monitoring therapy. Is it customary for one's sleep doctor to let you know that such things exist, are accessible, etc.? Is there a point where the doctor offers this information and make these suggestions? For example, maybe the machine I'm renting doesn't come with these options and once I purchase it, Apria can rig it so I can do whatnot with software? It's been 2 months and the only way I know about this stuff is through this forum. But it seems pretty essential. My sleep doctor is very pressured for time and has low tolerance for my many questions. But it's my right to participate to the furthest extent possible this process. I'm seeing her on Weds. and would like to know:

1) Is it appropriate to ask her about these things at this point or am I obligated to wait until the end of my 3-month compliance period?

2) Can you all recommend specific questions I could ask her right now? Here's where I am at, basically: I've rigged things so that the mask is relatively comfortable, but I only sleep 1-2 hours at a time. I have met my 4 hours exactly once in about 7 weeks of trying. I'm awaiting correct-sized headgear from Apria. Still exhausted.

If I have a list of questions, I can both meet my need to do everything I can to help myself be successful in using this machine to become well-rested and her need to get me out of her office within a half hour.

The only thing apria cares about is how many hours you use the machine each night. 'Compliance' means more than 4 hours per night, every night. The time is cumulative for each day, so naps are included in that hour figure. They don't care about pressure changes and probably won't even ask you about them. They care only about your hours per night.

If our AHI is reduced because we change our settings to something more suitable, they can hardly complain about patients taking control of their own therapy.

For those of us who find our mask off in the morning because we removed it while we were asleep, or it causes claustrophobia, the consideration has been to wear it for a lengthy period during the day, perhaps while reading or watching a movie in order to get used to having it on. Ideally, it is best to use it for every hour you sleep. You would not be the first to have this problem, and I hope others will chime in with examples of what they have done when the mask simply won't 'stay on', so to speak.

It helps to check your leak levels. If for nothing else, the software is very useful for that. When we can verify that our leaks are under control, that's when many of us find ourselves exploring the world of self-titration. If you don't have the right sized mask, leak levels may not be under control. This is your first consideration. If apria can't get it together to get you the correct size, complain to the doctor immediately.

Doctors are often pleasantly surprised when they find a patient who takes control over their own therapy and have verifiable data to back up what changes they have made, regardless of what the DME thinks.

It is always appropriate to ask questions. The only foolish question is the one that is conceived but goes unasked.

Like Jimbo said, YOU will need to take charge of your own therapy.
The medical professionals (doctors, DMEs and RTs) typically aren't going to be thrilled with you taking charge of it because it's cutting into their profits and CONTROL.

If you DO have a doctor who is willing to let you take charge, so much the better......but they're few and far between.
Just remember, they're taking your money, so they work for YOU.


Den

Thanks for your responses.

Whom do you suggest I approach about things like being able to control the machine settings, getting a copy of the sleep study, buying the software so I can track AHI, leaks, etc.: the sleep doctor or the RT at Apria?

Can you recommend specific questions I could ask that person right now? This list is just stuff I've gleaned from others on this forum. Is there anything else you all recommend I ask? My appointment is tomorrow.

What is a DME?

You don't need to approach anyone but this forum! You can get access to the clinician's manual, software download or where to purchase, and great folks who will guide you through understanding your data right here! Your doc or DME (Durable Medical Equipment provider) will probably only scoff at the notion that you could possibly do these things There are some doctors who are open minded about patient empowerment, but, sadly, not nearly enough. I was very lucky in that department and have one that supports my active participation in my therapy 110%.

Those with your machine will be along to help you get the links and info you need. Best of luck!

Whom do you suggest I approach about things like being able to control the machine settings, getting a copy of the sleep study, buying the software so I can track AHI, leaks, etc.: the sleep doctor or the RT at Apria?

Sounds to me like you are wanting permission to monitor and take charge of your health care, and that's probably NOT going to happen. It's just too inconvenient for the professionals. You've already said that your doctor acts as though she is time-pressured--sitting down and collaborating with you on your care takes time, and she is unlikely to be willing to do that--she can't make money that way.

If you want to be an active participant in your care, you need to stand up straight and take charge. This doesn't mean that you need to be rude, but you do need to be assertive. This is particularly difficult for us women. Listen to how to you speak to your doctor and Crapria. Are you asking (voice is higher than normal and goes up even higher at the end of a phrase) or making affirmative statements (firm, low voice)? Firm statements get respect.

Call your doctor's office today and let them know that when you come in tomorrow you'd like to leave with a full copy of your sleep study. You can certainly TELL the doctor that you'd like to take an active role in your therapy and that you hope she will support that--but don't expect any enthusiasm on her part (though you might be pleasantly surprised). She may try to shoot you down, telling you you have no business in all this--that's a reflection of her own biases, and not something you need to take to heart.

You should have a list of questions that are important to YOU. Do you know what your original study numbers were and what they mean? Hopefully the doctor will look at your current data and be able to tell you specifically what might be working or not in your therapy. If you have any problem areas, ask her for suggestions ("just keep using the machine" is not enough). Expect her to sit, listen, make eye contact, and not rush you.

napstress wrote:But it's my right to participate to the furthest extent possible this process. I'm seeing her on Weds. and would like to know:

I ask no one for permission,
I need no ones approval.

I am my own best therapist.

A difficult concept for some,
but well worth the effort.

I just reread your first post and I should add that with most insurers, you are in danger of losing your machine because you are not meeting the compliance requirements. You need to really pin this doctor down on the difficulties you are having and get some help fast. That should be the focus of your visit.

Make a list of WHY you can only wear the mask 2 hours (discomfort, claustrophobia, take it off in your sleep, can't sleep with it???) and make sure you both talk about solutions for these issues. Leak data should be looked at carefully, ramp settings, pressure, etc.

If you take charge of your treatment by learning to check your own data with software (you'll have to get that on your own, the DME and doctor won't help with that), you may be able to problem solve some of this if your doctor is not helpful. WE can help too, if you tell us what's going on.

Janknitz wrote:I just reread your first post and I should add that with most insurers, you are in danger of losing your machine because you are not meeting the compliance requirements. You need to really pin this doctor down on the difficulties you are having and get some help fast. That should be the focus of your visit.

Are you CPAPing less than 4 hours a day, or just CPAPing in chunks of less than 4 hours at a time?

I'm not sure whether "compliance" is 4 hours a day or 4 hours at a time. It may can't say for sure with your insurance company. Medicare says, "Over a 30 day period, your patient has used CPAP or Bilevel PAP for ≥ 4 hours/night ________ % of the time. Medicare requires 4+ hours/night of use ≥ 70% of the nights in 30 consecutive days for continued coverage for PAP therapy."

My EncoreViewer software with the card reader indicates a "day with 4 hour usage" even if the usage is chunks of time less than 4 hours. The display on the machine, even without the software and card reader, will show "sessions > 4." As best as I can decipher it, this is "nights with more than 4 hours total usage," not "individual CPAP sessions greater than 4 hours." i.e. Three two hour CPAP sessions show up as OK.

One trick though, I think a "day/night/session" measurement runs from noon to noon.

Just turning the machine on and letting it blow probably won't work. It can distinguish between breathing and no mask or blocked hose.

I also believe the machine can't tell between sleep with CPAP or awake with CPAP. If you lie awake in bed trying to sleep, or even watch TV or read with the CPAP, it will show up as "compliance time." Watching TV or reading isn't just a ploy to make good numbers, either. It may help you get used to CPAP.

Go to your machine when it's turned off. Open the cover where the display is. Push the right arrow button (upper right button). It will probably show you "Therapy usage" and "sessions>4". What does it show for sessions>4? It should show a 7 and 30 day average.

As for dealing with the doctor/DME:

Call your doctor's office and get a prescription on paper for a CPAP and mask before doing anything else. They should just give you a copy, but be sneaky if you have to. "Just in case you have problems while traveling and need a replacement machine or mask on a weekend." Or "I want a copy for insurance purposes. They said I should have one."

Then, if necessary, you can buy supplies and a machine online. (Possibly at your own expense.)

OK, So I have a plan of action for tomorrow's meeting with sleep doctor, thanks to everybody's input. Here's what I'll do:

A. Explain how it's going:

Problem: 2 hours issue:I wake up after 2 hours every night. Usually I take the mask off at that point and sleep through the rest of the night, which was my original goal before I learned I had OSAH. But, on the encouragement of this group, one night (Sat. 3/26)I persisted in putting mask back on. Result: woke up every hour for the next three hours. Next day, was having a hard time remembering the names of basic objects (fork, refrigerator).

Solutions I have brought about to attempt to address the problem:
a. Sun 4/3: drool accumulating in corners of mask and awakening me by tickling the sides of my mouth: cut a 2" square from a Whippity Wipe, fold in half, and tape (masking) to corners of mouth. Problem solved.
b. blister/pimple on bridge of nose from fiddling with mask in middle of night: preventative Band Aid. Problem solved.
c. Mon 4/11: Ordered correct-sized headgear from Apria. Mon 4/18: follow-up call re: status of order (another week).
d. Tues 4/12: half Xanax before bed: Didn't fall asleep for hours. This is very unusual, until I discovered my next point . . .
e. Sun 4/17: Realized that machine becomes aggressive sooner when I lie on back. This keeps me up, which is uncommon for me: usually I fall asleep within a few minutes of turning off light. I like to lie on my back until I'm just about to fall asleep and then roll onto my side. So I've started putting my mask on when I lie down, but not hooking up to machine until roll over onto side. This has nipped the beginning-of-night insomnia triggered by machine. Problem solved.

B. Obtain full copy of sleep study.

C. Ask Dr. to explain leak data, ramp settings, and pressure since started with new mask.

D. Determine what, exactly, I have control over with machine. Find out if ramping up has really been disabled. One RT told me it had been; the other says I have control over it. If it has been disabled, ask Dr. to ask Apria to rig my machine so I have more control.

E. Observe Dr.'s response to mention of self-titration, self-monitoring for leaks, Encore Viewer software—to determine the level of support I can likely get from her. Speak with Lab Director, who has told me, specifically, to call about anything.

Wish me luck and learning at my appointment, everybody!

That sounds like a good plan!

Your descriptions give a lot of good information. Now, in terms of your waking or being uncomfortable because the machine pressure goes up to an uncomfortable level, you need to know what your pressure and ramp settings are.

I'm going to make a guess that your pressure settings are "wide open" and that's what's causing you to wake after two hours--you go into REM sleep, and because your machine settings are not dialed in closely to a titrated pressure, the machine has to "chase" your apneas during REM. This bumps the pressure up higher than it needs to be, and that higher pressure is disturbing your sleep.

Doctors don't necessarily "get" this. They often think that a "wide open" pressure range will "catch" any apneas, but it just isn't so. The algorithm for these machines is pretty slow at responding to apneas and "pre-apneas" because the manufacturers figure a lot of these may be leaks and adding too much pressure too quickly will make the leak even worse. So when an actual event occurs, the machine has to give you a lot of pressure to catch up to the event and stop it. These machines are also pretty slow to drop the pressure after an event. So when the setting is wide open, you get too much pressure once it decides to respond to an event, and it stays up for a long time once it goes up.

Depending on how your doctor responds, we can help you dial in your pressures so that this is less of an issue. But here's an experiment to try tonight. The ramp button defaults to the starting pressure, even if the ramp feature is not supposedly turned on. So tonight, after the machine wakes you 2 hours in, try this--hit the ramp button instead of taking the mask off. That will bring the pressure back down and you MAY be able to continue to sleep (but you may also still be awakened every time the pressure goes up again--that's why the adjustment is needed).

Wow, thanks for your response, Janknitz.

Re: results of titration study, the doctor wrote, "CPAP of 8 good for supine nonREM but no optimal pressure found for REM sleep" and "Flex is set at 4-9 cm of H2O." Is this the kind of thing you are talking about? In the report about how I did during the first month, she wrote, "pressure does not typically reach 9 cm of H2O," but that might no longer be relevant b/c I had been using nasal pillows at the time and since then have been using a mask, which has been easier for me.

I'll be sure to try your experiment tonight!

It would be so helpful if I could read the pressure level in the middle of the night. That way, I could say to the doctor, "When I wake up, the pressure is at x." It may well be that the pressure is what wakes me up. It's like waking up to a fat, old man aggressively huffing in my face—in bed. Not that I've had that experience, thank the merciful gods! Anyway, other displays on the machine are lit up, and they aren't even necessary! But the RT said a display of the pressure is not possible with this machine.

napstress wrote:It would be so helpful if I could read the pressure level in the middle of the night. That way, I could say to the doctor, "When I wake up, the pressure is at x."

Am I missing something? My REMstar Auto M displays the pressure any time it's on. It's not backlit, but I keep a flashlight handy. As long as I don't turn the machine off, it continues to display the current pressure for a while. It even keeps the pressure on the screen if I take off my mask. It seems to take several minutes at least to drop the pressure back down after it's autoadjusted up.

hopefully your Dr. will respect the fact you want work to help make their job easier & make your therapy work.
coming right out & saying you wish to adjust settings yourself is a slippery slope, depending on your provider.
Keep that enthusiasm ! you are on the right track, especially for coming here.The folks on this site make it golden !
find the right mask & dial in correct auto range & you are good to go.... but beware of the cpap police..... some would rather us to be sheep