New(ish) diagnosis - sleep apnea


#61

Yes, my loaner machine has a cellular connection that uploads to a website that they’re able to see at my weekly appointments. Well, I assume they could check it at any time if they wanted to, but they’ve always just downloaded it at the beginning of my appointment. I’m assuming after my trial, I’ll check in with them periodically to get settings reviewed…but I’ll have to ask about how that works.

I asked if I could log onto the website to look at the data it generated myself, and they said unfortunately not. :slight_smile: She did, however, show me what the website was displaying and go over some of the numbers she was looking at (such as the 95% pressure number) and what it meant, because she knew I was interested.

There’s also a sticker on my loaner machine saying that there’s an app. I will download that when I get my own machine and see what it does.

As for buying supplies off Amazon, I’ll have to see what my insurance coverage is like. If they are skimpy (and they probably will be!), then I may go that route. I couldn’t find anything cheap on Amazon.ca, but I did see quite a bit on Amazon.com, and surprisingly it did ship to Canada.


#62

We just had a chance to talk tonight about this. He said in the United States, if insurance was in play, they would check to make sure the machine was being used. If the machine wasn’t being used, or with the frequency required by the insurance carrier, it wasn’t covered.

It will be nice for you, once you have your own machine, to be able to use the app to better understand your patterns - I’m hoping that’s how/why the app is there. Things have changed a lot he said, since he was involved; he wasn’t aware of any apps the patient used, only his respiratory therapists. I’m guessing just like the advances we have in diabetes treatment, respiratory has its own advancements too!


#63

Well, I’m not sure the app will allow me to do anything, but it might provide interesting information. There are already statistics on the machine’s main screen that I can look at. But all the pressure settings and such are hidden and I’m not supposed to know how to get to them (though I do, but I haven’t touched them). It does seem that they left a lot of settings open to me changing them, though…from what I’ve read, they can lock down the machines so that virtually nothing can be changed by the user. I quite like the way they have set up my machine, including settings (such as setting the “exhale pressure releif” function to maximum) and things like providing the heated tubing so quickly and showing me how to use those settings, that I think made my transition a lot easier than it otherwise could have been. The weekly appointments have been really useful, and it seems that’s something almost no one gets.

My insurance has ridiculous criteria, though I’m sure using the machine will be one of them. (I have a friend who’s covered under the same insurance and did mention something about making sure I use it religiously to get coverage.) Not a problem for me, since I’m exhausted all the time lately (I think my thyroid is still low, plus a few other things are low), so I’m doing a lot of sleeping with it. :slight_smile: I’ve been making a point of using the CPAP every time I climb into bed and not allowing myself to take it off even if I can’t sleep (such as the first two weeks when I really didn’t get much sleep), because I know if I let myself remove it, it’s like ignoring nighttime CGM alarms…very hard habit to break!


#64

I’m thinking now of my OmniPod and if someone could just lock it down and prevent me from adjusting my own basals or insulin/carb ratios. I shudder at the thought. I was glad when I read how you were sticking with it, even though you were having trouble adjusting. I kept hoping the therapist would find the right fit/match for you!

It seems like you are really getting a lot of benefit from the machine, which is great! Our son-in-law recently got one and he said it has helped him a lot - in that he isn’t as tired during the day as he was before the cpap. I’ll have to ask him if he is able to use an app and what kind of machine he has.

Have you looked into any of the cleaners they have out there for cpaps? They were advertising one on television not too long ago. I’m wondering if it would be worth the expense - $200 - $300 US. The commercials made it sound as if you can’t/shouldn’t live without one!


#65

I agree, I change my pump settings all the time. And there are lots of people who change their CPAP settings, even though they aren’t technically supposed to. So far I’ve been quite happy going through the company I’ve been working with. Next week I’ll have additional questions for them, such as for example the pressure range I have right now is 7-12 but most mornings I wake up and see 11.0 or 11.5 as the pressure number. So I’m not sure if that should be so close to the upper end of the range or should be more in the middle. So far the people I’ve been working with (except for one guy) seem quite happy that I have such questions and are happy to make changes if needed, and I trust their recommendations since it’s been such a good experience so far. I can see how people who are not getting the close follow up that I seem to be getting would get frustrated, especially if it’s set up in a way that makes it hard to use!

Even though I’m still physically exhausted most of the time from other health issues, I am definitely sleeping better. I used to wake up every single morning feeling like I had the flu: stuffed up, sore throat, headache, my body aching, and I’d drag myself out of bed feeling like I basically hadn’t slept. Lately I also felt like I was in a brain fog most of the time and would have trouble staying awake in meetings or while sitting talking with people. I don’t experience any of that anymore. And I also (since the lady changed the setting last week) don’t wake up in the middle of the night feeling like I can’t breathe. It’s so much better!!

I have heard of them, but they all seem to use ozone. Ever since that second night when I used ozinated water and woke up with asthma issues (and subsequently read that ozone is a lung irritant and shouldn’t be inhaled by people with asthma), those cleaners make me nervous. :slight_smile:

Right now I clean the little part of the mask that goes in my nose every day and rinse the humidifier, and everything else I wash in soapy water once a week.


#66

Oh wow, if there ever was one, you are a walking/talking/writing advertisement for a cpap!

I’m so glad your experience is a positive one!

I’m also glad I asked about the cleaner. Our son-in-law has asthma (and sleep apnea), so something like this wouldn’t be recommended. I was very close to buying him one! Thank you!


#67

I also found the heated tubing they gave me really, really valuable. I had asthma issues the first few days, then got that, and they went away. But then I fiddled with the settings and I think turned them up too high, and the next night I could barely breathe and lungs felt irritated. Put them back down, and have had no issues since. It seems that too little or too much humidity makes a big difference.

Also, I was talking to the lady last weekend about allergies. She said lots of people find that using a CPAP and breathing filtered, humidified air all night makes their allergies better. I told her how this is the first time in literally years I haven’t woken up stuffed up. :slight_smile: I do still wake up with itchy, watery, sometimes swollen eyes. So I may get a sleep eye mask to see if it helps with that. (We’ll see come spring/summer if I can still breathe through my nose well, if not I will be calling them up and asking for a different type of mask!)


#68

I’ve made my list and I’m checking it twice! LOL We’ve been singing a lot of Christmas carols these days!

I’m asking him if he uses an app and what kind of cpap he has.

I’ll tell him about heated tubing and let him know it’s available if his asthma flares.

And, I’ll let him know about filtered water. I think I’ve heard him mention something about “his” water, so he might be using filtered water already, but it’ll be good to check and let him know it will help.

I’ll ask if he uses a mask or a nasal cannula, but if my memory serves me correctly (and it has been known to fail on countless occasions!) he has a full face mask.

Thank you, Jen, all of this is invaluable information!


#69

@Jen I emailed my son-in-law, and he replied and said I could share it. I really did think a lot of this was all going to be news to him. I was glad to hear that he was already on-track with much of what has been shared in thread. Although he said he doesn’t use the app, he can, and explained what he can do with it.

I use a full face mask cpap from resmed with a heated tube and can make my own adjustments. The main settings I use are tube temp and humidity (raise and lower with the time of year).

I don’t use filtered water I use distilled so there are no minerals that will collect or get trapped in the unit.

I don’t know if it helps with my asthma as my flare ups are more from allergies and believe it or not…smells. Vanilla perfume is a killer. I don’t know why. I love to cook and eat anything with vanilla but there is something with the synthetic perfumes that instantly make it hard for me to breathe.

I have noticed that as long as I keep the mask clean, because of the humidity, I have less problems with nasal infections during the winter.

I dont use an app although I could. I log onto myair.resmed.com and from there I can see all my stats. Hours of usage for the night. How many events I had per hour, how many times I took my mask off or it fell off, and how good of a seal I had based on leakage which is based off of L/min, with a threshhold of less than 24L/min.


#70

That’s great, thanks for sharing! I’m glad he is doing well!

Last night I had some issues with water in my mask, and it fell off and leaked more than usual. It also makes a random whistling noise when I exhale, which is extremely irritating. From Google I’ve found that seems to just happen with the mask I’m using. I can’t seem to find a specific cause or pattern, it just sometimes happens and sometimes doesn’t.

So overall, I didn’t have the greatest sleep last night. I came home today and napped for an hour (which, to be fair, I’ve been doing most days for the past while).

I adjusted the tubing temperature to be warmer. It’s been colder here, and I read that these things have to be adjusted with the weather. Hopefully that will be better for tonight. With time, I imagine I’ll learn what settings to adjust when to prevent these types of problems.

I’ve now been using the CPAP for about three weeks (just over) and I feel like I have learned a ton so far. Yet I’m sure I’ll continue to learn a lot more!


#71

It seems like it would take a while to get used to sleeping with either a nasal cannula or a face mask, especially if there’s a whistling noise. I can’t imagine. Sort of like the dripping faucet I bet! Here’s hoping that it won’t be much longer before you’re sleeping through the night!


#72

Yeah, the whistling noise comes and goes, but it’s extremely annoying. It’s not related to leaks, because even when the mask isn’t connected to the machine it still makes the noise.

I’ve been using a fan most of the time overnight (often did this before CPAP as well), so that helps to cover the noise of the mask, my breathing, and the machine. :slight_smile: But it obviously didn’t help with the water or the leaking last night.

I do intend to try different masks once I get my own machine. Since this is the only one I’ve tried, it’s hard to tell whether another one would be better.

I think like any medical stuff, this is an adjustment that will take time to fully adjust to, and probably always have the potential to pop up with annoyances every so often.


#73

Happy birthday Jen!


#74

Thanks!


#75

Yay! Just got insurance pre-authorization for nearly 100% coverage the CPAP machine and supplies. They quoted me $2,500 for the machine, tubing, and mask, which does seem more expensive than what I’ve seen on other sites (though I’ll only need to pay about $50 of that). I think that they said insurance covers new mask supplies every two years (though I’ll need to confirm that). So if I need something in the meantime, I may well look into Amazon, if a prescription isn’t needed in Canada


#76

The water should not be there, you are experiencing condensation, try one of two things, turn up the heat on the hose or reduce the heat on the humidifier. Turning up the hose heat too high might be problematic, if too high the warm air might feel smothering.

Another thing you can try is to keep your hose under the cover with you, especially if you like sleeping in a cool room.


#77

Thanks! I will try putting the humidity down a notch (I upped the heat a notch and it was better, but still got a few drops of water). My room isn’t cold, but I do have a fan blowing on my head, so I imagine that might make the area where the tubing is sitting colder. I think it’s sometimes under my bedding and sometimes on top, depending on how I’m sleeping—sometimes when I’m snuggled up, having a bunch of cold plastic stuff under the covers feels uncomfortable.

I had another follow-up appointment today. All the pressure settings are staying the same and everything looks good. I have to do an overnight oxygen test tonight with a unit that looks like it was manufactured in 1995. :rofl: I joked that I was a zombie when I put it on my finger and the guy turned it on and it gave me no heart rate or oxygen numbers for many seconds, but he didn’t seem to take the joke. I’m going to feel like a cyborg for sure tonight with all these gadgets I wear! Hopefully I can sleep okay.

At my next appointment, I’ll be exchanging my loaner unit for a permanent unit to keep. YAY! Hopefully the next appointment will be in two weeks instead of a week. I really appreciate these weekly appointments and such close follow-up, but I get medical-appointment-burnout after a while.


#78

Amen


#79

The way this was explained to me was that your initial purchase is not really a purchase but rather a lease to own plan. If you comply with the use requirements insurance will pay the lease payment, if you don’t comply insurance drops payment and you are left with the bill.


#80

I managed to get my oxygen test done last night, though falling asleep was no easy feat! Between the cable of the oxygen sensor, my pump tubing, the CPAP tubing, and my cell phone cable everything kept getting all tangled and wrapped around one another. Plus with my CGM alarming all night, the sounds from the CPAP machine, and the light from the oxygen sensor (which unfortunately did not have a long cable, so the unit had to sit right next to my head, and since it was probably made in 1995, it had bright red numbers on screen all night and no dimming feature!), it felt like trying to sleep in a hospital! But it is done now. :slight_smile: My oxygen levels did seem sort of low whenever I glanced at them, but we’ll see what the specialists say.

Also, I did take the plunge and downloaded my data into the SleepyHead program. Just because I was really curious to see what was recorded. Not planning on touching any settings. Hopefully I haven’t screwed up the SD card. I did put it back in the machine and it accepted it, which is a good sign. :slight_smile: