Feel like I'm not getting enough air

For a while now, I feel like I'm not getting enough air. I changed from nasal mask to full face mask because of talking in sleep and mouth breathing. I still feel like I'm not getting enough air with the full face mask. I'm wondering if it is just that I'm used to the pressure now after being on it for almost two years. I smoke (which I know is a no no, pcp fussed at me again this week about it) and am wondering if it is reduced lung function. I have a REMstar Plus w/ cflex so I get no data from it to know how the therapy is actually working. My setting is 10 with cflex setting of 3. I called my PCP and the nurse told me she will tell dr, but in the meantime, to call sleep doc because he may want another sleep study to retitrate. Has anyone else gone through multiple sleep studies for retitration? If they make me go again, it will be my 5th sleep study . I hope I can convince the sleep doctor to get me a new machine with data capability and possibly APAP??? I see everyone putting what their AHI's, leak rate etc is and no one has ever even given me that information from even one of the sleep studies I've had. They just set the pressure on the machine and sent me off. The last sleep study did determine that I have RLS and PLMD in addition to the OSA. Wow, I just feel powerless in controlling my therapy. I don't feel like having yet another sleep study and sent out the door with no way to track my therapy. They'd probably get a more accurate reading if I could do APAP at home because I'd be comfortable instead of all wired up in an uncomfortable bed. I'm venting about this dilemma, but need advice in how to approach to sleep specialist to get what is needed to have more info about efficacy of therapy.

If it were me.......I'd say to the doctor......"I don't like this machine, I want something better. This is what I want.....REMstar Auto with A-Flex.....make it happen!"

They're working for YOU (you and your insurance are presumably paying their bills). It's YOUR health.

Den

turn Cflex down to #2

You're right. It IS time to take some control! Contact your sleep lab(s) and request a copy of the data summary report from each of your sleep and titration studies. This is NOT the same as the dictated results report. The data summary report should run about 5-6 pages and include a few graphs. You might as well ask for the dictated reports as well if you weren't given them at the time. These are part of your medical records and in the US you have a legal right to copies of these records. The lab staff may delay and have to get permission from the doctor to do so as most patients don't request copies of these reports. Jusually just the savy patients you find in these forums.

Then explain that you are having difficulties again, feeling like you are not getting enough air, and TELL THEM you are requesting that they order a loaner autoPAP for 2 weeks to ascertain a better pressure setting for you. Also remind them to order a loaner heated humidifier w/that autoPAP. If the sleep doctor won't order the autoPAP loan for you try talking your family doctor into doing so. To save time, the pressure range on the autoPAP should be set just 2 cms or so below your current set CPAP pressure and up to the 20 cms that is the top pressure most autoPAPs can provide, at least for the first week. If the DME or the sleep lab is willing to do the download at one week, then the pressure range can be narrowed and reset based on the first week's data to further tweak your pressure needs.

Meanwhile, to get you some temporary relief you might try dropping the C-Flex to 2 or even 1. That might help. Do you use the Ramp? Do you need it? You could try turning the Ramp off too, that might help you to get to sleep sooner w/o fighting to breathe.

Since you are a smoker, when is the last time you had a Pulmonary Function Test, or at least a Spirometry? An EEG to check for pulmonary hypertension? Its probably a little early yet for an ABG. Those results might give more information and help w/your next request which is for an autoPAP of your very own in place of your Plus.

If you have a good relationship w/your family doctor, he can write the orders just as easily as a sleep doctor can. Just remember with an auto the doctor needs to specifiy a pressure range, even if it is the wide open 4 cms to 20 cms.

Two years is a little early yet for insurance to replace your CPAP. Your doctor may need to write a Letter of Medical Necessity before your insurance will approve a new purchase. Especially if one of the new M series autos is scripted - or another manufacturer's auto - as that will require replacing the humidifier as well unless you already have a stand alone heated humidifier instead of the integrated humidifier.

RLS and PLMs are often relieved or eliminated w/CPAP therapy. Good luck!

From the replies I now know I must be "assertive" if I'm going to get anywhere with this.

I will change the cflex setting to see if i get relief until I get this straightened out. Also, I do not use the ramp feature. I stopped using it shortly after I got the machine. I felt like I couldn't breathe on ramp, so I go straight to the 10 pressure when it turns on.

I will ask for the autopap w/ humidifier loaner and see where I get with that. I'm sure the sleep doctor will balk at that because he probably wants to get $$$ for another study. Also, I'll work to get copies of previous studies. These were done at different labs.

As far as getting a new machine, will they still refuse to get one after two years if a different insurance company purchased the first one? I'm definitely going to ask for a REMstar Auto with A-Flex.

I haven't had any lung function tests done, but I'm sure my doctor will order them if I ask for them. I've had to change pcp's and have only seen him a couple of times, but appears to be on top of his game.

I'm so glad I found this forum. Y'all are great. Thank you so much. I didn't know beans about any of this except to put the mask on at night and turn the machine on before I got here. The sleep doctor and the lab definitely weren't informative, but from what I've read that isn't so unusual.

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CPAPopedia Keywords Contained In This Post (Click For Definition): humidifier, cflex, Ramp, auto

I missed it in my first read of your post, but if you've had that machine for two years, the chances of getting an "upgrade" will be very iffy. If you've got your prescription and can afford it, my (updated) suggestion would be to get the machine of your choice from CPAP.COM. If you've got a humidifier for your existing machine, getting a "Classic" Auto w/C-flex would be a less expensive way to go because the humidifier you have will work with that one. There's absolutely nothing wrong with those machines.....I have two of them.....and wouldn't trade them for any of the M Series machines. (the software is a little easier to come by, too)

Den

You should be able to get the new machine from the new insurance company if you get the script for the auto and the medical necessity stipulated. I'm not convinced the cflex adjustment is going to help as it is opnly supposed to be relief from pressure during exhalation.

Have you checked/changed your filters lately?

Do you have large leaks?

Are there perhaps oxygen addition ports on the mask which are not plugged?

10 cm might not keep your airway open during sleep, but it shouldn't limit your ability to inhale.

TerryB

As long as you continue to smoke why care about the quality of your life.

The answer is quit smoking, invest your money in a APAP and the software, and make your life better.

As long as you have money for smokes, having the money shouldn't be a problem, after you have money to burn. Jim

Become the better person, and life longer.

I don't have any large leaks. I wash my reusable filter weekly and change my ultra fine filter monthly or sooner if dirty. There are no oxygen ports on my mask.

Jim, I do want to quit smoking. Your statement "As long as you continue to smoke why care about the quality of your life." sounds a lot like "If you continue to smoke then just throw your cpap machine out and die." Thanks

I've tried searching for software and it looks like cpap.com isn't selling it anymore. Tried directmedical, which I saw in another post, and couldn't find it there either. I typed it in a search engine and couldn't find anything. Is software for REMstar machines still available elsewhere to be purchased. Wouldn't do me a lot of good to get one that is capable of downloading data if I can't find the software. Can you see stats on the machine for REMstar Auto plus apap?

Probably a little harsh on my part, it just doesn't make sense to me to ruin your health one way while worrying about it on the other, is doesn't compute.

It would be better for you to get all of your horses pulling the same directions. We are all behind on taking care of ourselves, a lot of damage has already been done. We don't have the time left to correct our problems, and even less time if we don't do what we know is correct to do. Jim

I have to agree with GoofProof on this one. It makes no sense to worry about not getting enough breath if you still insist on smoking, which is taking your breath away.

I can also relate to you regarding how hard it is to quit because I have been through it myself.

The trick to quitting is not to go into it with the idea that you can't do it because you can. If you were dropped on a deserted island without cigarettes you would quit whether you wanted to or not and you wouldn't die.
So don't just want to quit, do it!!

I sound preachy because I have a 55 year old sister that is dying of emphysema right now. She can no longer leave the house or take care of herself. She doesn't even look like my sister anymore because of the steroids they give her to keep her going. It breaks my heart.

You are totally right Jim. It doesn't make sense to work toward health in one direction and against in another. You may have been blunt, but perhaps that is what I needed to hear and get a good kick in the rear. I've got to tackle the addiction and overcome it.

last post was me. i forgot to log in.

dieselgal..I'm sorry to hear about your sister. Congrats on you quitting yourself. I am going to quit. I did it once before for five years and was dumb enough to pick them back up again. After the first one, I was as addicted as ever. I've been kicking myself in the behind for doing that ever since. I'll still be around three others who do smoke, but I can't make their decisions for them.

When it gets there you have a P.M. Message. You can go to the top right of page to get it, sometimes there is a delay. Jim