CPAPtalk.com

I completed my sleep study in mid August. I received my machine September 30th. I was apprehensive because up until now, I could only get a “good night’s sleep” on my belly with my face buried in my pillow. But the Doctor said not to worry that anything could be overcome with the equipment that was available.
When the Home Health provider called he wasn’t as optimistic with the choices. He explained the prescription was binding and gave me a choice between two masks, and what ever mask I tried on I had to buy.
The first night was a bad experience. The pressure of 12 was too great for me with the nose pillows. I kept waking with air forcing its way through a very dry mouth, and even worse, I struggled to exhale. But, I stuck it out for 3-4 days.
Finally, I called my Doctor, explained to him that the CPAP given me was capable of APAP with C-flex and it sounded like the right thing for me. He said he would consider it and let me know. But, in the mean time I needed to change to the mask given me from the sleep study.
I got word the next day that the home health care provider would be contacted to make the changes. Several days went by, I made few phone calls, but received no answers as to when. I changed masks, received some relief when I breathed in but, exhaling seemed more difficult.
I dug through this site and found the information I needed to change the settings. I changed the CPAP setting of 12 to AFLE with a range of 5-14. After 1-2 nights I tweaked this to 7-12 with a C-flex of 3 and finally realized what you all have been talking about.
I called my doctor, to discuss the changes and keep him in the loop. I had to leave a message with his assistant. I explained why I had made each change and the results of those changes.
I received a call from the home health care provider, finally to see how things were going. I explained everything in detail. He lectured me on the evils of making my own changes and instructed me that the machine was capable of a 4-20 setting. I explained again why I used the chosen settings and left it with the agreement he would get with the doctor.
I received a call from the Doctors office explaining the new prescription of 4-20. I felt like I was not communicating. After lots of phone tag, the doctor reached me at home.
To my surprise, I was lectured like a child. I interrupted him to make my case and reminded him how he had sold me on the idea that to make this work compliance was key. I explained that compliance was impossible as long as discomfort was so great and that if he objected to my taking an active aggressive role in my therapy then, I needed to find a new doctor. He agreed and continued to lecture me. I told him he needn’t concern himself further and told him good bye.
I wanted to say: I guess asking you for a prescription for the set up manual and software is out of the question, huh?
Well, I’m on my own for now, but from the looks of things a lot of you are doing great and I’m encouraged by that. In closing I want to thank everyone for their posts which have helped me alot.

WOW what a story.

A couple comments

You were lucky to get a machine that was an APAP right off the bat.

2) forget keeping the doc in the loop or the DME that obviously leads to trouble unless you have an idea that the doc is supportive to begin with.

S0, question is now how much your copay is for this machine.

Can you complete the compliance with minimal DME involvement and get the insurance co to buy the machine? If so that is what I would go for.

Software doesn't require a prescription. Insurance most likely won't pay anyway so just buy it on CPAP.com if you want it.

New masks -- if you want to try another are also available without preseciption from Cpap.com. Yes you will pay out of pocket but compare that to the copay on an inflated dme price and you won't be too upset.

Sounds like you are well on your way.

You don't say what machine you have not but a lot of the folks here will share info on setup and/or for $6 (though it pains me to pay for something that should have been in the box) you can get most any manual on ebay.

You are on the right track.

7 - 12 sounds good. With the software you can see how high you actually go. If you are hitting 12 you might want to make it 7 - 13.

I know you don't want to see that doc again, but you might want to call his office and see if you can't get a copy of the prescription and sleep study. You may need this and you have a right to it. OR, you can get a new doc to request the records and give you copies (regular doc -- doesn't need to be a sleep doc).

Figure out what your insurance needs for you to own the machine etc. so you can leave that DME behind too.

Hang in there. You are going down the right path.

Copay with deductible etc, was $500.

The machine is a Remstar Auto C-flex with heated humidifier. I have the card. It's recording the data. I just need to buy the software after the dust settles and learn how to recover, analyze, interpret and use the data.

The autopap has gone up to 14. I haven't tried it higher. Until I find the right mask I'm going to have to leave it at 12...leaks, sinus issues, swallowing air etc. I think I will overcome most of these in time and with the right mask. I have not yet gone back to the pillows, the Mirage Swift. I'm still using the Respironics Comfort Select.

As for the prescription I asked the doctor for a copy and a copy of the sleep study twice. I will have to go in person and probably have to pay for a copy.

Paying for a copy of your sleep study is not that big a deal should be less than $1 per page and sleep studies are typically 6 or 7 pages.

You say $500 copay to the DME. Is that the total outlay for the machine and the mask you have? Or is there more to come? Also, if it is the total copay do you now own the machine or is that what you figure with the rent to buy period? I am just asking to make sure you are not paying the DME (whom is being a pain anyway) more than a cash purchase. Your machine is just under $700 on CPAP.com. Mask not included. I assume you got a humidifier with that and included in the $500?

You have the same machine I do and I love it. Mine is set at 10 - 15 with a titrated pressure of 13. It runs much of the night at 10. As you can imagine leaks at 10 are less than leaks at 13.

On the interface (mask), I haven't tried that comfort select you have. I use the swift. You were doing what happens to most people with any kind of nasal interface (mouth breathing/leaking)

A good number of us tape our mouths. Opinions on tape vary. I like 3 M paper tape. Reasonably gentle. Fold over the edges so you can grab for quick pull off if necessary. I also use an ace bandage (like a commercial chin strap) Others have their versions.

Yes, I look rather funny when I go to bed, but hey, it works. Just have to be careful to not clench your jaw and work at tongue on the upper palete.

The respironics comfort select looks to me to be a nasal mask. You aren't having the mouthbreathin trouble with that mask too? Same general idea, puts air at pressure up your nose, I would suggest trying the taping wtih that mask too at least for now while you work at getting it all to work right. Some can not tape, but I think those people are rare AND LUCKY!

If you are leaking too much the cpap isn't doing you the good it could.

JM wrote:(snip)

The autopap has gone up to 14. I haven't tried it higher. Until I find the right mask I'm going to have to leave it at 12...leaks, sinus issues, swallowing air etc. I think I will overcome most of these in time and with the right mask. I have not yet gone back to the pillows, the Mirage Swift. I'm still using the Respironics Comfort Select.

(snip)

With the Swift, which you pictured, I had a very hard time with leaks.

If you wish to research these things, using the Search button above, look for sinus--saline wash with syringe, bulb, neti pot or irrigator.

For swallowing air, the term is aerophagia.

And, of course, search for your Comfort Select mask.


Here is a link to all KINDS of Swift fixes, compiled by Rested Gal:

Swift Fixes

More Swift Fixes:

More Fixes for the Swift

JM,

It certainly sounds like you have got your self management well under control.

It is dissapointing to hear stories of doctors/respiratory specialists, not really listening to what their patients are saying. But you appear to have solved that problem as well.

It has seemed to me for some time now, that lowering one's cms to a tolerable level is far better than trying to persist at high levels such that one gets so frustrated that the therapy gets abandoned.

Most people seem willing to put effort into understanding what is taking place in their therapy.

The masks are to me the problem of the day. Trying to get a comfortable mask seems to be the single biggest collective challenge for people on cpap therapy.

Some Doctors do tend to be nervous about patients exercising control over their own therapy. In some cases they may be justified but from the bulk of stories here, some are not.

Cheers & keep up the good work

DSM

Paying for a copy of your sleep study is not that big a deal should be less than $1 per page and sleep studies are typically 6 or 7 pages.

You say $500 copay to the DME. Is that the total outlay for the machine and the mask you have? Or is there more to come? Also, if it is the total copay do you now own the machine or is that what you figure with the rent to buy period? I am just asking to make sure you are not paying the DME (whom is being a pain anyway) more than a cash purchase. Your machine is just under $700 on CPAP.com. Mask not included. I assume you got a humidifier with that and included in the $500?

You have the same machine I do and I love it. Mine is set at 10 - 15 with a titrated pressure of 13. It runs much of the night at 10. As you can imagine leaks at 10 are less than leaks at 13.

On the interface (mask), I haven't tried that comfort select you have. I use the swift. You were doing what happens to most people with any kind of nasal interface (mouth breathing/leaking)

A good number of us tape our mouths. Opinions on tape vary. I like 3 M paper tape. Reasonably gentle. Fold over the edges so you can grab for quick pull off if necessary. I also use an ace bandage (like a commercial chin strap) Others have their versions.

Yes, I look rather funny when I go to bed, but hey, it works. Just have to be careful to not clench your jaw and work at tongue on the upper palete.

The respironics comfort select looks to me to be a nasal mask. You aren't having the mouthbreathin trouble with that mask too? Same general idea, puts air at pressure up your nose, I would suggest trying the taping wtih that mask too at least for now while you work at getting it all to work right. Some can not tape, but I think those people are rare AND LUCKY!

If you are leaking too much the cpap isn't doing you the good it could.

I received what seems to be the cover sheet to the study. It states: "...During the titartion phase there appeared to be provocation of central apneas. At the final pressure of 12cm of water, there was near complete resolution of sleep-disordered breathing for a final respiratory disturbance index of 7.4. The Lowest saturation recorded was 94% at this setting."

The $500 includes mask, humidifier, card, & machine. It's my understanding that after a 10? month rental period its mine. The therapist from the DME is supposed to monitor the card and report to the doctor. However, I believe this therapist might go by way of the doctor. At this point I'm not sure what position the DME will take. That's why I say I'll wait 'til the dust settles before I buy the software etc.

I've considered the tape after reading some of the posts but have not yet tried it. I don't normally sleep with my mouth open. I have awakened as I felt my cheek, usually the right one, puff up before I release. I feel like a blow fish. I think it's worth a try.

Thanks snoregirl...

birdshell, thanks for the links....


JM