Archives for posts with tag: CPAP

I am not impressed with the DME company I was set up with for the sleep apnea stuff.

Every person I have talked to, every forum I have lurked on, every CPAP supply website (which I do take with a grain of salt because they profit from selling more masks) … they all say the same thing. A CPAP mask is an individual thing and what works great for one person will be the leakiest and most uncomfortable contraption for the next person. All of our faces are shaped differently. There is no “one size fits all” solution.

I have used a ResMed Quattro Fx mask for over a week now. It works great and is fairly comfortable, except for one thing: it’s eating away the bridge of my nose! I have tried everything I could find – liners, loosening the mask, tightening the mask, band aids, cushions, ointment with cushioning … it’s still bruising the bridge of my nose and I’m waking up with blisters on the side of my nose. (I guess the skin on my nose is the same as the skin on my torso – really, really thin and hypersensitive … it looks so bad after removing any kind of bandage, the infectious disease doctors thought I had a nasty skin infection while I’m going “it’ll clear up in a few days, it’s not an infection, it’s from the bandage.”) I did some research, and decided I want to try one of the hybrid masks – nasal cushions attached to a mask over the mouth. The skin around my mouth has not had any problems.

So I call the DME provider on Wed and tell them I’m having problems with the mask and want to exchange it and try out a hybrid. They don’t seem too keen on an exchange. “So you want the technician to come out and help you adjust the mask fit?” NO. I want to try a totally different mask. “The first available appointment is Friday between 9 and 12, will you be home then?” I blocked out my Friday morning and the bridge of my nose looked forward to some relief. I did think about just not using the damn thing for a couple of nights, but I feel so much better using it (me, not my nose).

Today’s Friday. I sat around all morning, alternating between knitting and reading. I got a call a little after 11:30 from the technician, who calls to make sure I’m home. He says he’s still a ways away, but I want him to help me with the fit of the Quattro, right? NO! I want to try a hybrid mask. He doesn’t know what I’m talking about, even though the CPAP sites have a separate category for hybrid masks. I describe it to him, he finally recognizes what I’m talking about as the ResMed Mirage Liberty and doesn’t know why I want to try it. What’s wrong with the mask I have? I explain about the bridge of my nose. He tries to talk me into trying different things, I say I’ve already tried that and that and that and that … “Well, I don’t have a hybrid mask with me – I’ll have to call the office and have her order one and it probably won’t be here til sometime next week. Are you sure you want to try the Liberty?” YES!! He’ll call me sometime next week when he has it in hand. I didn’t even bother to ask why it hadn’t been ordered Wed.

I won’t think about what happens if the Liberty doesn’t fit my face. (Although I do already have a plan. If my DME won’t order the other company’s hybrid mask, called the “Hybrid”, I’ll buy it myself because reading reviews it seems like if one hybrid doesn’t fit well, the other will. It’s half the price of the ResMed Liberty, but I get the feeling that my DME only offers ResMed respiratory stuff.)

Two other random unimpressions: CPAP masks fit differently depending on whether you’re sitting up or lying down (not to mention whether you’re lying on your side or your back). Why then, wouldn’t you fit a mask in the lying down position? Or at least mention it to a new CPAP user? This is why I try not to trust just one source of information. I don’t remember what I did before the internet.

My CPAP machine was set up stupidly. It didn’t show any kind of data; the “sleep quality report” told me how many hours I used the mask. That’s it. Well, I am nothing if not resourceful. I not only figured out how to get into the number data on the machine telling me about apnea numbers and mask leakage, I also figured out how to get into the clinician’s screens to change settings. (No, I did not change anything therapeutic. But I did set the clock to the correct time so that the data would correlate to actual time instead of being 5+ hours off.) The next project is downloading the open source code program floating around out there that can read the data from the SD card in the machine. (Yes, I looked at the manufacturer’s site for the software. They refuse to sell it to patients. Apparently us sheep are incapable of processing our own data and have no business wanting to know anything about our sleep quality. No, I’m not bitter – much.)

I wonder what Sheldon would have to say about all this?

Last night was my first night at home using my new CPAP machine. Wow. There’s a bit of a learning curve.

First, the machine wants me to breathe more than I want to. It wants me to take more and deeper breaths, and it signals it’s displeasure with my slow shallow breathing by making the mask quiver: that is going to take some getting used to. Last night, I’d go along with it for awhile, but then it’d just get to be so much work. It’s easier to be still. So I’d start “fighting” it. (If I didn’t have a mask over my nose and mouth, I would have yelled at it about cooperation and playing nice … I know. It’s supposed to make me breathe, that’s the whole point. Still. It’s going to take some time for us to feel like partners.)

Then there’s the humidifier. Did you know that you need to fill the tank with water for the humidifier to work? Otherwise, morning brings a very dry nose and mouth. It felt like I’d been up all night shouting myself hoarse at a video game. (Yes, I speak from experience. Both staying up all night and making myself hoarse by yelling at a video game I’m playing.) I need to integrate the CPAP into my morning and bedtime routines. Fill the tank and clean the tank and mask every day.

I also rediscovered that I drool when I sleep. Not much of a problem, wipe it away with your hand or on the pillow when it starts bothering you, right? Except that THERE’S A MASK IN THE WAY! So it doesn’t automatically get wiped on the pillowcase. No, you need to remove the mask (or lift it up if you’re feeling daring), wipe it away, and replace the mask, making sure you get a good seal or the CPAP doesn’t work. (Of course, without a good seal I wouldn’t have to fight about breathing rates, but I’m trying to be a good patient.) Then, just as you start settling in again … more drool!

The last thing I’m going to talk about today is my dog. He’s a 10-12 pound Yorkie-Poo with a very cute face and short little legs. Meaning: he can’t jump up on my bed by himself, but I’m a sucker when he steers those puppy-dog eyes my way. I have an ottoman next to my bed for him to jump onto and from there he can get on the bed. Usually. Last night, he woke me up twice by yipping and pawing at my arm. He’d gotten down, the CPAP hose fell across the ottoman, and his way up was blocked. Yes, I picked him up. Yes, I moved the hose for him. He also woke me up a few times barking and growling so much I thought there was a stranger in the house. There was – the CPAP hose.

I’m going to try routing it a different way tonight. Wish me luck!

Today, I got a compliment and a criticism in the same sentence at tai chi. “Moves look good but no forces.” (native Chinese speaker) I just wanted to yell AAAARRRGGGGHHHH. I feel like Luke Skywalker with Yoda, trying but not doing. Spirals. Circles. Stupid forces. (Yeah, I know. They won’t be stupid once I figure them out. But right now …) All I can do is keep experimenting. I do wish we were still doing push hands, though. It’s less work when you don’t need to imagine the forces you’re deflecting – it helps to have real people “coming at you” with real forces. I haven’t reached the point where I can pull those forces out of the air. Yet.

In other news, I finally have an appointment to get my CPAP machine and oxygen. They’re coming to the house on Monday after a morning rehearsal. It means missing a meet and greet lunch with our new conductor, but it was that or wait another week … and I’m so over waiting. My patience no longer exists. Just two more nights, then I’m looking forward to a nap with the new machine. A planned nap, unlike the disaster that happened yesterday …

I swore I was not going to take a nap, just go to bed early. I was wrong. I sat down to watch The Big Bang Theory while drinking a green shake. I don’t know how long I was out, but the show was over, the television had shut itself off, and my dog was ensconced on my lap, licking at the green shake that had spilled all over my shirt and shorts when I somehow fell asleep while drinking it. I’m still not sure who got the lion’s share of that shake – me or Boo. Guess I was tired … and really glad my aunt got me a washing machine!

 

I got the results of my first sleep study: I stop breathing 11 times an hour when I’m laying awake watching television; when I finally fall asleep, I stop breathing 41 times an hour and my oxygen levels go down to the 70s. I always did like to pick and choose which rules to follow – I guess the one where breathing is an automatic bodily function is one I don’t like.

I have to wait for the results of my second sleep study; my doctor is on vacation and I don’t see her until the 9th of September. I know they’re hoping to get the oxygen up to the 90s without supplemental oxygen, but I won’t find out for another week+. Until then, I’ve given myself permission to nap if I feel like it, without guilt. (Okay, so I have been napping. But with guilt.)

Next up will be figuring out the CPAP mask. I was okay with the one that covered my nose and mouth until I got home the next day and realized that the skin on the bridge of my nose was compromised by just the one night. It’s healing now, but I’m a little worried about the long-term – I have no desire to fight MRSA again. Time for some research. Amazing how the internet has made it so much easier to find things out.

On Tuesday night, I did the first night of what turns out to be a 2 night sleep study. I was hooked up to more wires than I have ever been in my life – even after spending all that time in and out of the hospital years ago. I felt like I was in the Matrix with some Big Brother thrown in there. There were wires sprouting from my forehead, face, neck, top of the head, back of the head, chest, back, legs, and hand. There were two belts around me and two different thingies stuck in my nostrils. (Plastic does not smell pleasant.) Once all that was hooked up, I laid in a bed with a video camera watching me all night … it was mounted on the wall at the foot of the bed and the little green light blinked at me all night.

Then they expect you to sleep!

I’m not sure what was more unnerving, the wires that kept me stiller than usual because I was afraid I’d tear them off or the video camera with someone watching me all night.

I did manage to drift in and out of sleep, and after paying attention the past couple of nights at home, I can say that it actually was a fairly typical night of sleep that they recorded. Apparently not good.  The tech said I’d get a call within 48 hours if they didn’t need me to come back. I got a call. But instead of telling me not to come back, they were calling to make sure that I’d be there next week. They left a message reiterating the date and time and the importance of keeping the appointment, then needed me to call back to confirm that I would be there. I go back this Tuesday for a CPAP mask titration. Same deal as last week, except that someone will be adjusting the mask and rates all night.

Let’s see, I’ve got something in my arm to monitor my blood sugars, something in my abdomen to regulate insulin, and now I’ll be getting something on my face to regulate my breathing.

I am Borg. Resistance is futile. But at least I may finally be able to get a good night’s sleep again!

 

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