New User, question about Friday's DME appointment

[retired_guy]

Straight 6 might be great for some, such as you and the OP perhaps. For me personally if some techie tried to restrict me to one fixed pressure, especially a low one, there would be problems. For me if I'm not getting 7 or better I think I'm going to suffocate. That seems to vary with a lot with folks, and it may have to do with my crappy lungs. But at 9/14 my O2 stays perking along at 93% which is pretty darn good for an old guy with "severe" (my shiny asx) emphysema. Don't accept anything the good doctors tell you......................

My humble opinion is if a techie dude were to prescribe a fixed 6, I would be happy to oblige by using a machine that would vary between a low of 6 and a high of 10. Not that I don't trust the wisdom of the techies, but they really don't have a lot of experience with my body. 2 hours in a sleep clinic don't cut it.

My point is this: Telling the OP that s/he is going to be uncomfortable with his/her titrated pressure of 6cm before the OP even starts therapy does no-one any good. The OP needs to try the titrated pressure. If it's enough to control the OSA, the OP will likely find that 6cm provides plenty of air for comfortable breathing. Moreover, the OP may be just as likely to find that 6cm feels like a hurricane and have some trouble exhaling against the pressure as s/he is to find that 6cm is so low that inhalation is problematic.

In my opinion it does no one any good to tell a newbie who has not even started therapy that their titrated pressure is too low or too high to ever be comfortable. Let 'em start their therapy with an open mind and then tell US whether they are having problems with inhalation (inhalation pressure may be too low for comfort) or exhalation (exhalation pressure on may be too high).

And when a newbie DOES complain of "not being able to breathe comfortably", it's equally important to tease out whether the breathing difficulties lie with inhalation (not enough air for comfort) or exhalation (too much air for comfort) rather than just assuming the newbie's problem must be "pressure is so low no one can breathe" or "pressure is so high no one can breathe"

Thank you for the dressing down robysue. I guess I was not clear that I was expressing MY opinion on this subject. I don't recall telling the OP or anyone that their therapy was too high or too low.

But you have successfully reminded me who this web site really "belongs" to, so I'm done now.

[PaulaO2]

Retired-Guy, you are both stating your opinion, neither is berating the other.

Let's bring this back on topic and assist the OP with his/her issue please.

[SleepyDreamCatcher]

Thanks to everyone who has replied. It is very interesting to me to hear all your opinions. I'm both looking forward to my appointment Friday ands little apprehensive. Since my DME is a part of the hospital systems work for I hope to be able to establish a positive and comfortable working relationship with them. Since our aim is to provide excellent customer service I am hoping that by going in as an educated and aware consumer we can work together to put together a system that works well for me. This may be a dream, but I'm going to try to catch it.

Finding the right mask/nasal mask/nasal pillow seems to be more of a trial and error affair and more subject to difficulties. I notice that many posters talk about having multiple masks. Is that because it took longer than the 30 days return limit to decide they didn't like the mask?

And one more question... Do insurance plans cover a battery back up system for power outages or is that something I'm going to have to buy on my own?

Thanks so much for your thoughts.

[Sleepster]

Finding the right mask/nasal mask/nasal pillow seems to be more of a trial and error affair and more subject to difficulties. I notice that many posters talk about having multiple masks. Is that because it took longer than the 30 days return limit to decide they didn't like the mask?

Yes, they'll give you another mask after the first 30 days. It also happens that the DME will give you two to try and you have to return the one you don't like before the 30 days is up.

And one more question... Do insurance plans cover a battery back up system for power outages or is that something I'm going to have to buy on my own?

We're on our own when it comes to battery back ups. If weight is not a concern a 12-volt deep cycle lead-acid battery will give you the best bang for your buck. PRS1 machines run natively on 12 volts, so there're no converters involved. Turning off the humidifier greatly extends battery life, as do solar chargers. Next time I see a storm coming I'm buying an extra battery for my car. I'll have two fully charged batteries and a full tank of gas to recharge them. Plus solar cells.

For camping I'd do the same thing, unless I was back packing a considerable distance from my vehicle. Then I'd get a lighter lithium ion battery and still have at least some solar charging capability.

There's no sense in being grumpy and sleep deprived, or as those closest to me would say, grumpier.

[Stargazer]

My question, is should I still request from the DME to get an APAP & set it to work as a CPAP?
[/size]

Hi SleepyDreamCatcher and welcome to the forum!

I'm a little late to this "party" but I would def request an APAP! As you have read, it provides much more flexibility. At the very least, a data-capable machine.

In my opinion, if you can get the doc to write a script for a specific machine, that would be the best case scenario. Have him/her write, "dispense as written" as well.

I'm new here as well and I received a ResMed S9 Escape (brick), then I was lucky to upgrade to an Elite from the DME. She misrepresented some info so I bypassed her and had my doc write the RX for an AutoSet. I finally have the machine I didn't realize I wanted from the beginning (I didn't do my homework)!

Hopefully, with all this info from everyone, you can get the machine you'd prefer on the first go 'round! Good luck and keep us informed!

[SuperSleeper]

Okay, I'm going to jump in here just one time.

While I understand the desire to advise brand-new CPAP patients to live with their prescribed pressure for a time period before considering pressure changes, I have to say that I tend to agree with retired_guy that sleep doctors, RTs or technicians should not be averse to starting off brand new patients on Auto-CPAP (APAP) set to operate within a small range of pressures.

Some of the points retired_guy alluded to I tend to agree with, such as:

1. Ask for an APAP, because (for most patients) they generally deliver better therapy within a set range of pressures. After all, that's why we all like APAPs over CPAP around here, and APAPs can be operated in CPAP mode if need be. He even states this in his first post: "So it becomes why not have the more capable machine?" I agree with him here.

2. He states "In my case a pressure of 6 would leave me feeling like I was suffocating all night." He didn't say that the OP would automatically feel the same way. In fact in another post, he said, "Straight 6 might be great for some, such as you and the OP perhaps."

3. He then states his opinion that "Setting a machine on 6 and sending you home doesn't sound like a very good idea to me.". I sort of agree with him here. I personally believe that with today's APAP algorithms, it's perfectly safe to set a small range of pressures so that the machine can adjust pressure to lower AHI throughout the night according to the patient's changing needs. Gone are the days when poorly programmed APAPs would have "run-away pressure". That just doesn't happen with modern APAPs now, unless they're defective. So i don't think it's an unreasonable suggestion that if a lab-titration pressure is 6 cmH2O, the technician could safely give the patient an APAP set to 6-10. If the patient doesn't need the higher pressures, the machine will not deliver the higher pressures.

4. He's also right that lab titrations are (at best) an approximation of the most effective single pressure that will prevent most apnea events. I believe that a set pressure via an in-lab titration can be a good starting point, but that one set pressure assumes that everything will be the same in the patient's home-- the same as far as the surroundings and distractions, the same as far as the patient's physical condition from day-to-day, the same as far as what they ate that day, what drugs they took and a number of other factors.

This unproven faith that one single pressure is best for most new patients makes a LOT of assumptions. That's the whole reason behind giving a patient an Auto-CPAP machine - to allow for and adjust to a patient's changing needs during the night and also from day to day as conditions change. So, why do we deny that to a patient, refusing to give them anything but a single-pressure CPAP simply because they are brand new to all this?

retired_guy was not suggesting that the OP change or completely ignore the prescribed pressure. (as in changing the pressure from 6, up to 8 or 10)... Rather, he was suggesting that the technician might have better served the patient by A) prescribing an Auto-CPAP machine, which has a lot more benefits and options, either in CPAP or APAP mode, and/or B) Properly set-up an Auto-CPAP machine which for most patients is likely deliver more effective therapy than single-pressure CPAP (even for brand new OSA patients).

As always, just my opinion, but I personally believe that all obstructive sleep apnea patients should be given an APAP machine unless there is a clear and compelling medical reason not to do so. APAPs offer so much more as far as options of treatment. It just makes sense. And also, no matter what, I think that all prescribed machines should be fully data-capable so patients and doctors can monitor the ongoing effectiveness of treatment and use that data to make small adjustments as needed.

[PaytonA]

I agree completely!

[SleepyDreamCatcher]

SuperSleeper,

Thanks so much for the thoughtful post you made today. I've printed it and will be taking it with me to my next appointment with the Sleep Tech at the end of the month so that I can make a case for changing the settings on my new S9 AutoSet.

Thanks to everyone who responded and gave their input. It was greatly appreciated. I have my new unit now, but that is a story of another post.

[Gabby]

SuperSleeper,

Thanks so much for the thoughtful post you made today. I've printed it and will be taking it with me to my next appointment with the Sleep Tech at the end of the month so that I can make a case for changing the settings on my new S9 AutoSet.

Thanks to everyone who responded and gave their input. It was greatly appreciated. I have my new unit now, but that is a story of another post.

So pleased you are up and running with an Auto set.
Good luck to you in the land of CPAP,