Archives for posts with tag: Sleep apnea

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?

First I waited for them to figure out why they keep finding infiltrates in my lungs. (Still no clue.) Then I waited for them to decide what the two nodules in/on my lung and liver are. (Still guessing – adopting a wait and watch strategy.) Next I did a sleep study, waited a week for another sleep study, waited another two weeks for my doctor to come back from vacation.

Now? Had the doctor appointment, found out I’m getting a CPAP machine with supplemental oxygen and am now waiting for the medical equipment company to call again. They called a bit earlier to say they’d gotten the faxed orders, but now they have to wait for insurance company approval before they call me again to set up an appointment to come and show me the ins and outs of the machine … here’s hoping it’s sometime this week since we’re working next week! (Not to mention it’d be really nice to sleep and breathe through the night.)

 

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.

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