Newbie Question about APAP / PR System One with C-flex

[frh]

My so far rather short journey with Sleep Apnea started a couple of weeks ago when my wife had a Sleep Study. (But this tale isn't about her so I'll let her log-n if she has something to say.) I was sitting in the chair next to her bed, reading a brochure and realized I have a lot of the symptoms the brochure listed. Since it took over a month to get her in to see the doctor, I pushed them for the first appointment with any doctor they could get me in to see.

I got lucky and saw a different Doctor on Thursday, 2 days later. (I like the guy, and boy am I glad it was with a different doctor than the jerk she saw...) They scheduled me for the Sleep Study the following Tuesday, and the follow-up a week and a half later on Thursday (tomorrow). I know that 's pretty quick, but I'm getting real tired of not being very functional during the day.

I got there at 8 pm, was all wired-up and tried on a couple of masks by 8:30. (A "nasal pillow didn't seem too uncomfortable.) Then I stared at the ceiling for over an hour. So I gave-up and asked if I could take a sleeping pill. The tecnician said it wouldn't affect the study. I got woke-up at 1 am and she put the machine on me. I woke again right on schedule at 4 am to use the restroom. My nose was a little sore, but she said I'd get used to it. I asked about BiPap and she said she would let me try that the rest of my sleep. It seemed easier, but it wouldn't let me finish exhaling before it kicked-in. She said I'd get used to that too. (So I halfway expected the doctor to write a prescription for a BiPAP machine.)

The technician confirmed she wouldn't have put me on the machine if I didn't have Sleep Apnea. So I called the Insurance company. They told me they would approve the prescription as soon as they got a request from a Durable Medical Equipment supplier.

Three days later on Friday (at 4:30 in the afternoon) I got a call from a Respritory Supply company. I told them it would probably be easier to deal with the company my wife is already getting oxygen (for her COPD) from. They said no problem and offered to fax the prescription over to the other company.

I called Tuesday morning to ask if they received the prescription. I discovered CPAP is handled by a different department than the Oxygen people we have been dealing with. I called the CPAP Clinic and learned they have both of our prescriptions, but didn't get to them yet. The lady wouldn't set-up an appointment at their CPAP Clinic until they had authorization from the insurance. I told them they already supply my wife's oxygen, and the insurance already told me they would approve it as soon as they got it. But they still wouldn't set up an appointment. I told them since my follow-up with the MD is Thursday, I hoped to get at least one night sleep with it before I saw him.

I asked them what kind of equipment they have and they told me either Respritonics M Series or PR System One. Being more than a little frustrated with them, I said I wanted the System 1. They said if I insisted, I could have it.

They called back just before 5 pm today (Wednesday) and said they had approval, but their next opening is Monday afternoon. Since I already read the System One user manual I asked them if they need a new prescription from the doctor for them to turn-on the C-Flex feature.

Turns out the doctor specified an APAP machine on the prescription. Then they told me I can't have that or even the C-Flex turned-on unless the doctor calls for a setting of 12 or above. My setting is 6. They told me I would have to wait until Monday to talk to a Respiratory Therapist for a better explanation.

Can anyone enlighten me about what's going on before I see the Doctor at 11 am tomorrow? (I'll be able to read any responses on my PDA.)

[Huffer]

You're getting a great xpap. Don't squawk too much until you have it in your hot little hands, and then gradually make some changes. Read some posts from from people on this site who have fought tooth and nail for a data capable machine. Try it out, and then talk to your dr, and if you still have some questions, post them here. BTW, I prefer the A-flex mode.

[JohnBFisher]

... I was sitting in the chair next to her bed, reading a brochure and realized I have a lot of the symptoms the brochure listed. ...

Yup. It's sometimes easier to read and believe than admit it to yourself. My wife read an article 20 years ago. She shared it with me. I said "maybe". I was undecided ... until the night I snored so loudly both of the kids woke up screaming. "Okay, okay. I'll talk with the doctor about it!"

By the way, welcome to the Forum! Hopefully you'll find helpful answers here to questions you didn't even know you would have!

... They called back just before 5 pm today (Wednesday) and said they had approval, but their next opening is Monday afternoon. Since I already read the System One user manual I asked them if they need a new prescription from the doctor for them to turn-on the C-Flex feature.

Turns out the doctor specified an APAP machine on the prescription. Then they told me I can't have that or even the C-Flex turned-on unless the doctor calls for a setting of 12 or above. My setting is 6. They told me I would have to wait until Monday to talk to a Respiratory Therapist for a better explanation.

Can anyone enlighten me about what's going on before I see the Doctor at 11 am tomorrow? (I'll be able to read any responses on my PDA.)

Well, if I were in your shoes, I would tell the doctor that I found it hard to breathe against the continuous pressure. But I found BiPAP to be better. Though I understand that I don't need the two pressure levels, I wonder if there is a feature of the APAP unit that would make it easier to exhale.

If I'm not mistaken from your post - every bit of that is true. You are just providing information to your doctor that will convince him you should be able to use one of the Flex settings (C-Flex).

You probably should also talk with your doctor about tracking your own therapy. Not that you want to change it, but you want to see if it is effective or not. You will want to know if your mask is leaking, if the AHI (apnea-hypopnea index) increases, and so on. There will soon be patient available software for the Respironics PR System One series. Most (decent) doctors want their patients to be involved in their therapy!

You might also be able to talk your doctor into enabling the Auto part of the machine. For example, if you come home exhausted and stressed, and you are then you are more likely to snore / sleep badly, it might indicate your pressure needs will change. Another thing that can often increase your pressure needs is alcohol. If you drink too much before going to bed it tends to increase the number of severity of the apneas.

The good news is that your doctor wants you to have an APAP unit from the start. That you hit it off with him (and that you are a take charge person) indicates to me he wants to have you involved in your therapy. That is a very good sign.

Also, the PR System One has gotten some very good press by the members of this forum. I used Respironics machines for many, many years. They tend to be very sturdy. One CPAP unit lasted almost 19 years. One of their BiPAP units lasted about 13 years! I still have one of their M Series BiPAP units.

Anyway, I hope that helps. Good luck with your doctor visit. Hope it goes well for you.

[frh]

Follow-up: First, I was wrong, the doctor did not specify APAP. Simply CPAP with C-flex and a pressure level of 6. The guy wouldn't check the little box that said no substitutions, and got irritated when I told him I want to take an active part in managing my Sleep Apnea. I will not be going back to him.

I have an appointment tomorrow morning with the DME provider to exchange the Swift LT mask to a Swift XT mask. The LT mask is making my left nostril and upper lip sore. The FX mask probably won't be any better for my left nostril, but it didn't make my upper lip sore at the sleep study. While there I intend to tell them I want a full face mask and an APAP machine instead. (My insurance says one mask every 3 months, and if I have to buy a Swift FX out of pocket it will be cheaper online and I know it will work on good nights.)

This business of them giving me a cheap machine led me to a lot of investigation. When I related my experience so far with the Respiratory Therapist at a competing DME supply company, he told me I should be on APAP. He also said he likes patients who participate in their Sleep Apnea treatment. As an alternative to using the software they don't want me to have, he offered to download and print-out the data from my card every couple of weeks (if I bring my prescription to his company). I made an appointment with my regular MD next week and am going to push him to re-write my prescription for APAP.

Here's why: I have severely restricted nasal passages. A broken nose when I was a kid left me with a deviated septum blocking about half of my left nostril. I’m a mouth breather, always have been. I also suffer from allergies. Not much I can do about pollen, and I'm not going to get rid of my dog. A shot 3 or 4 times a year keeps the sneezing and sinus congestion at a somewhat tolerable level (at least before CPAP). Other than an occasional Benadryl (which I hate), I do not take antihistamines. I always figured the side effects are worse than the congestion. I tried a neti pot the other night. It was a strange sensation trying to pour salt water through through my nostrils. I think it helped, but it still bordered on being one of the bad nights.

I was breathing relatively easy the night of my sleep study. But I have a feeling if I had done it on a congested night the results would be a lot different, and I would have a higher pressure. (I have not changed the pressure yet because if I did, I would have no basis for comparison this early into CPAP.)

Of the last 7 nights with CPAP, 3 have been great. I wake-up the next morning full of energy and raring to go. Last night I even pulled the mask away from my nose a couple of times to see if the machine was on.

Of the other 4 nights, one was somewhat challenging, two have been bad, and I totally gave-up about 1 am on one. On the bad nights, if I can breathe through my nose at all, I have to consciously inhale to get enough air through the mask. Breathing out against the pressure can be even more of a problem. When I'm congested, exhalation through the mask is lengthy and labored, even if the mask is disconnected from the machine.

I am really tired of taking Ambien, but on congested nights I simply can't fall asleep, and won't stay asleep without a sleeping pill. The night before last a lot of air was coming out of that little exhaust port on the mask while I was trying to inhale. And I was mostly exhaling through my mouth. On the days following those bad nights I feel really tired and crappy.

Still, I figure it is better to wear the mask than to not wear it on congested nights. But I worry that I will get used to breathing through my mouth with the mask on.

At this point I think APAP and a full face mask (if I can find one that will work with my facial hair) would work a lot better. Am I on the right track?

[cflame1]

If you're mouth breathing... and it sounds like you need to at times. You'll need to get a FFM.

I know people will try to tell you that it's uncomfortable, and you probably will think that it's uncomfortable... but you'll need it.

I have allergies myself (and asthma) and my nose gets congested. On those congested nights you could need more pressure to get past the congestion... but you also don't want to lose it all out an open mouth.

[frh]

Thanks, cflame1. I just walked in the door after 10 hours of running around / Dr. appointments. Whew... The first stop this morning was with the DME provider to change masks. They special ordered a Swift FX (what my prescription called for) to replace the Swift LE that was hurting my nose/upper lip.

I told the Therapist I was having trouble breathing through my nose when I am congested and wanted a full face mask that would allow me to wear my glasses. I expected some flack, but he pulled out a Respironics Full Life mask https://www.cpap.com/productpage/respir ... dgear.html from his cabinet. (Sorry, haven't figured out how to embed the link on this forum yet.) A large size mask leaked like crazy. A medium size felt comfortable, didn't have any leaks as far as I could tell, and I can wear my glasses with it.

I expected him to read my card and let me know what was happening when I slept. But he didn't seem interested. I told him I was going to try to get my doc to change my prescription to APAP. He didn't seem to understand I was serious and said it wouldn't matter, their policy is to provide a standard / base machine for anyone with a pressure under 12.

This afternoon I dropped-off my prescription and sleep study at the company I talked to the other day. The guy said the mask and heater the first company gave me were purchased by the insurance and I will only have to give the machine and bag back to the first company. He said they will probably provide another new mask and heater. (Wow, 2 masks.) He told me it will probably be Tuesday or Wednesday of next week before they call me to set-up an appointment to pick-up the new machine. That's OK because I have an appointment with my regular Doc on Wednesday. If I can get the prescription changed to APAP he said they will fill it that way. I sure hope my GP co-operates...

[SleepingUgly]

Put moleskin or some kind of protection on your nose with the Full Life, whether you think you need it or not. If you don't need it, no harm. If you did, you'll be glad tomorrow!

[frh]

SleepingUgly, thanks for the tip. Is Moleskin something I can run up to Walgreens or Walmart and pick-up before going to bed tonight?

Rick

Edit 1: Should have searched the internet before I asked the question. Looks like the Walgreens around the corner has it.

Edit 2: Ran up to Walgreens, bought a package, but think I will try the first night without it.

[SleepingUgly]

Sorry, I went to bed early last night! I hope it went OK without the moleskin. The Full Life beat my nose up in one night and then turned it into a pimple colony (never knew so many pimples could fit in such a tiny space). If yours didn't, great. If it did, now you know what you have to do. If your nose is bad, I'm not sure I'd put anything on it until it clears up because it will likely exacerbate it, even with moleskin. But you'll have to use your judgment about that, given what you know about your apnea and whether you should not treat it while your nose heals.

[frh]

Actually I did use the moleskin after all. It worked great but I don't really know what would happen if I tried to sleep without it. I'm going to start another (less verbose) thread about my experience with the mask.

Rick

[getafix]

A basic question. What exactly is a moleskin? Is it some sort of padding? If so, how would it help? Would it prevent from having a good seal with the mask?