Update on Dad

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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BleepingBeauty
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Update on Dad

Post by BleepingBeauty » Thu Mar 19, 2015 4:36 pm

Dad had a home sleep study recently, and he was diagnosed with severe apnea (AHI of 56; AI 45.3; HI 10.5; only 1 Central all night; no snoring; sleep efficiency of 53%). His O2 desats weren't terrible (min of 77%), but his Desat Index (4% drop) was 52.3/hr. He obviously needs a machine.

LSS, there's one (and only one) DME that their insurance approves, and that company has shown themselves to be irresponsible and, in a word, shitty. It's not a national chain DME, but they really do suck. I've made four phone calls to them since they got Dad's referral from the PC last Friday. Each time I call and leave a message with someone, I'm assured that one of the Respiratory Therapists will call me back; nobody has. Yesterday, I was told emphatically that either their RT manager or their top RT would call me and come by today to evaluate Dad; needless to say, we never even got a phone call.

When I pushed for information yesterday, I was finally told (by the receptionist, after waiting on hold for awhile) that Dad will be receiving an S9. She wouldn't specify a model, but I objected anyway since the S10 is the newer line and they're obviously pawning off an older machine (even if it's never been used). But again, nobody has called me back to discuss this.

I've decided to call Dad's PC doc tomorrow and tell her exactly what I want a specific prescription to say so that this asswipe DME can't fuck around with which machine they're going to provide. I'd rather Dad get a Respironics machine (just because that's what I use and am familiar with, and because I already have the software needed), but I'll be fine with him getting an S10 and dealing with their software if need be. I'll let them fiddle with the mask-fitting, but the machine will be specified.

The recommendation from the sleep study company is for a titration in a lab, of course, but with Dad's condition, that's not wise. They advise an auto with pressures wide open (5-20), of course, but his doc hasn't said anything about who (if anyone) will be monitoring his therapy and making appropriate adjustments. She hasn't referred him to a sleep doc, so I don't know what her game plan is for his treatment. (It seems nobody cares very much, so I'll be more than happy to monitor him, myself, and adjust his therapy as needed.) For now, he's using my backup APAP with settings of 8-13; some nights, he doesn't go much above 9 all night, and other nights, he's pinning the upper limit of the range. He thinks he sleeps on his side most of the time, but his sleep study indicates that he spent more than half the night on his back.

So which machine should I ask his doc to prescribe? Is the Airsense 10 that much better than a PRS1 Series 60? And which mask(s) would you guys recommend he try? I've had him using the P10 (nasal pillows) because he's claustrophobic (was pulling off the FFM I had him using early on) and the P10 is the only other mask I brought with me from AZ; but he's got long nostrils, and the large P10 pillows are leaking more than I'd like. So, long nostrils, a mouth-breather, and he's claustrophobic, which makes the right mask a tricky proposition. I thought maybe a total face mask would be a good option, but I've never tried one, myself. What say you guys?

TIA
Veni, vidi, Velcro. I came, I saw, I stuck around.

Dx 11/07: AHI 107, central apnea, Cheyne Stokes respiration, moderate-severe O2 desats. (Simple OSA would be too easy. ;))

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Sleeprider
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Re: Update on Dad

Post by Sleeprider » Thu Mar 19, 2015 5:32 pm

Well we now know how you come by your name BleepingBeauty.

Respironics / Resmed. Both make very good auto machines. You don't seem to be heading towards a bilevel, so, I'd say it doesn't matter which one you get from a therapeutic standpoint. Both will give great feedback.

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Bill44133
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Re: Update on Dad

Post by Bill44133 » Thu Mar 19, 2015 5:53 pm

You might try the a mask that doesn't have the forehead support. I also am a bit claustrophobic. I use the ZZZ mask by probasics which works good for me.

Sounds like your dad is good hands with his daughter leading the charge.


I wish you well...

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Nyre
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Re: Update on Dad

Post by Nyre » Thu Mar 19, 2015 6:05 pm

Sounds like your dad is in good hands. Don't give up. Keep diligent in getting what you want

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Elle
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Re: Update on Dad

Post by Elle » Thu Mar 19, 2015 6:12 pm

That ZZZ mask Bill mentioned looks like it might work for claustrophobia.

Sorry it is such a struggle. I sometimes wonder if doctors don't spend as much time and effort with older people. Your dad is lucky to have you.

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BleepingBeauty
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Re: Update on Dad

Post by BleepingBeauty » Thu Mar 19, 2015 8:07 pm

Sleeprider wrote:Well we now know how you come by your name BleepingBeauty.

Respironics / Resmed. Both make very good auto machines. You don't seem to be heading towards a bilevel, so, I'd say it doesn't matter which one you get from a therapeutic standpoint. Both will give great feedback.
Yep, they're both good names, and I won't quibble about whichever brand he gets (as long as it's an auto). I just want the fucking ( ) company to do the right thing, for a change. Pipedream, I know...
Bill44133 wrote:You might try the a mask that doesn't have the forehead support. I also am a bit claustrophobic. I use the ZZZ mask by probasics which works good for me.

Sounds like your dad is good hands with his daughter leading the charge.


I wish you well...
Thanks, Bill. Here's a kick in the head: The FFM I brought with me from AZ *is* the ZZZ Mask. That's the one he was ripping off every night, and it's the least objectionable FFM I know of (so much silicone, so little hard plastic, and nothing on the forehead). *sigh*
Nyre wrote:Sounds like your dad is in good hands. Don't give up. Keep diligent in getting what you want
Thanks, and no worries about being diligent. My name on this forum is BB for a good reason, and they'll find that out if they keep jerking me around. If you notice, the roadrunner (appropriate for someone from AZ) in my avatar is munching "expletives." hehe
Elle wrote:That ZZZ mask Bill mentioned looks like it might work for claustrophobia.

Sorry it is such a struggle. I sometimes wonder if doctors don't spend as much time and effort with older people. Your dad is lucky to have you.
Thanks, Elle. I would have thought the ZZZ Mask would be good for Dad, too, but that's the one he was ripping off. Maybe I should try it again, now that he's more comfortable wearing any mask at all. He's been much more cooperative about it lately, wearing the P10 all night for the past several nights. (He was ripping that one off, too, for awhile.) I'll bring it up in the morning and see how he reacts to the prospect. I'm not even sure that the size I have is right for him, but hopefully, he'll be willing to give it another go.

~~~~~~~~~~~~

Update: The stupid company did call late this afternoon, but they called my cellphone (and not the house phone) and left a message that they need to speak with me about the CPAP "for your mom." I've told them each time I've called that I'm calling on behalf of my Dad, and the order clearly states my Dad's name (which cannot be confused with a woman's name); just more of the incompetence and/or indifference that I seem to encounter everywhere I turn these days. Grrr. (I didn't have the cell on me at the time, so I missed the call. I'll be trying them again first thing in the morning...)

Thanks, everyone, for your replies and suggestions. I appreciate it.

Does anyone use a total face mask, and is it good for someone with claustrophobia? I would think it'd make things worse, but I thought I'd read some reviews of that type of mask here awhile ago that stated that it feels more "open" than typical masks, so the claustrophobia is mitigated with it. Maybe I'm nuts. Well, I *know* I'm nuts, but...
Veni, vidi, Velcro. I came, I saw, I stuck around.

Dx 11/07: AHI 107, central apnea, Cheyne Stokes respiration, moderate-severe O2 desats. (Simple OSA would be too easy. ;))

PR S1 ASV 950, DreamWear mask, F&P 150 humidifier, O2 @ 2L.

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Re: Update on Dad

Post by HoseCrusher » Thu Mar 19, 2015 8:47 pm


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BleepingBeauty
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Re: Update on Dad

Post by BleepingBeauty » Thu Mar 19, 2015 9:11 pm

HoseCrusher wrote:This looks interesting...

https://www.cpap.com/productpage/RespCa ... -Mask.html
Thanks. That's the mask that *I* use. I happen to love it, but I think there's too much mask to seal for Dad. He was recently diagnosed with Alzheimer's (not dementia) and has to be helped to even put the P10 on; he never remembers to split the back of the headgear and sometimes wears the pillows upside down. In short, the simpler the mask, the better for him. And I think Dad's nostrils are too long for any large nasal pillow (unless someone makes an extra large one; that might work, but only if it's longer and not just larger around)...
Veni, vidi, Velcro. I came, I saw, I stuck around.

Dx 11/07: AHI 107, central apnea, Cheyne Stokes respiration, moderate-severe O2 desats. (Simple OSA would be too easy. ;))

PR S1 ASV 950, DreamWear mask, F&P 150 humidifier, O2 @ 2L.

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Re: Update on Dad

Post by Pugsy » Thu Mar 19, 2015 9:19 pm

You might look at the Pilairo Q nasal pillow if you can get your hands on one. The nasal pillows probably the most suited to long slotted nostrils of any nasal pillow mask I have ever seen. It's a one size fits all and it's a generous size. Might work.

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BleepingBeauty
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Re: Update on Dad

Post by BleepingBeauty » Fri Mar 20, 2015 5:34 am

Pugsy wrote:You might look at the Pilairo Q nasal pillow if you can get your hands on one. The nasal pillows probably the most suited to long slotted nostrils of any nasal pillow mask I have ever seen. It's a one size fits all and it's a generous size. Might work.
Thanks for that suggestion, Pugsy. The Pilairo looks like it could be the answer, and I'll buy it outright if the DME can't/won't provide it. I like the idea of the whole face mask for him (if he could be fitted with one) for two reasons: 1, I swear I read reviews here once upon a time that indicated it's great for claustrophobic users because the field of vision is expansive, and 2, there'd be no worries about mouth-breathing. But I think he's gotten used to the P10 now, so the Pilairo might be perfect for him (if he's stopped mouth-breathing, of course).

Obviously, I can't tell from the data if the leak is coming from around the P10 or if he's mouth-breathing, and my mother's got hearing issues, so she hasn't been of much help in making that determination. He drinks a good amount of water daily, but he hasn't complained about waking up with a very dry mouth; hard to tell what's happening during the night in that regard.

This whole process is so much more difficult when you're trying to help someone who can't fully grasp the significance of effective therapy (and whose partner still rolls her eyes about the whole thing). Mom *is* better about it these days - i.e., not so vocally negative - but she still thinks Dad has enough to deal with and that adapting to xPAP is futile; doesn't help that a local friend keeps telling her that her own machine has been in the closet for a year now. (Thanks, lady.)

I know Dad would fare much better during daylight hours if he was actually getting some good sleep at night. I don't expect a miraculous recovery, but decent sleep would at least give him a fighting chance to recover from the physical issues he's still experiencing post-surgery and hospitalization. I just want his remaining time on the planet to be more enjoyable. He laments his situation frequently (feeling helpless/useless/dependent), and it would do him a world of good mentally if he could feel more productive again.

Veni, vidi, Velcro. I came, I saw, I stuck around.

Dx 11/07: AHI 107, central apnea, Cheyne Stokes respiration, moderate-severe O2 desats. (Simple OSA would be too easy. ;))

PR S1 ASV 950, DreamWear mask, F&P 150 humidifier, O2 @ 2L.

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Madalot
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Re: Update on Dad

Post by Madalot » Fri Mar 20, 2015 8:43 am

BB -- your father (parents) are SO lucky to have you. You are doing a BANG UP job trying to get this taken care.

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BleepingBeauty
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Re: Update on Dad

Post by BleepingBeauty » Fri Mar 20, 2015 9:33 am

Madalot wrote:BB -- your father (parents) are SO lucky to have you. You are doing a BANG UP job trying to get this taken care.
Thanks, Maddie. I'm doing my best, but this DME is really pissing me off. They've already proven to be incompetent just with phone calls, so I'm dreading the actual equipment process. They told me this morning to expect a call from the RT again today, but I'm not holding my breath... I'm sure I'll be making yet another call to them this afternoon to bitch and moan about being ignored again.

Whatever happened to the concept of the squeaky wheel? I'm squeakin' (and I'm doing my best to be nice about the bullshit treatment I'm getting from this DME so far), but I'm not gettin' any grease. Maybe they know they're the only game in Humana's town, so they can sit on their butts and not care about customer service?

I suspect the bleeping will be necessary soon. I hope they're prepared for it.
Veni, vidi, Velcro. I came, I saw, I stuck around.

Dx 11/07: AHI 107, central apnea, Cheyne Stokes respiration, moderate-severe O2 desats. (Simple OSA would be too easy. ;))

PR S1 ASV 950, DreamWear mask, F&P 150 humidifier, O2 @ 2L.

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Re: Update on Dad

Post by Janknitz » Fri Mar 20, 2015 1:24 pm

If he's managing to keep his mouth closed, then one of the newer generation of nasal masks might be just right for him--e.g. the Wisp or the Nano. They are small and unobtrusive, and I love their softness. I'm getting almost no leaks with the Wisp (except for the occasional repositioning when I turn over in bed). It is comfortable, and because it's so light and small and doesn't plug up my nose I don't feel the least claustrophobic in it. The headgear sucks, though.
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BleepingBeauty
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Re: Update on Dad

Post by BleepingBeauty » Fri Mar 20, 2015 1:58 pm

Janknitz wrote:If he's managing to keep his mouth closed, then one of the newer generation of nasal masks might be just right for him--e.g. the Wisp or the Nano. They are small and unobtrusive, and I love their softness. I'm getting almost no leaks with the Wisp (except for the occasional repositioning when I turn over in bed). It is comfortable, and because it's so light and small and doesn't plug up my nose I don't feel the least claustrophobic in it. The headgear sucks, though.
Thanks, Jan. I'm not sure that he's mouth-breathing, but I suspect he is. I have to remind him several times (after putting the P10 on each night) to breathe only through his nose. (He tends to want to inhale through the mask and exhale through his mouth. )

But I'll keep these two masks in mind if I think he can stop the mouth-breathing. It'd be much easier if we didn't have to fit him with pillows at all; if I can just train him away from the mouth-breathing, a nasal mask could work well. Thanks for the suggestions.

~~~~~~~~~~~~~~

FWIW, I brought a chinstrap with me and tried to get him to use it, but he kept ripping it off in the middle of the night. Less is more with Dad, apparently.

Nearly 4 p.m. now and still no callback from anyone at this terrible DME (big surprise). I think it's time to go into full-on bitch mode with them, as a whole week of this shit is really pissing me off. (I'll ask you all to keep them in your thoughts. )
Veni, vidi, Velcro. I came, I saw, I stuck around.

Dx 11/07: AHI 107, central apnea, Cheyne Stokes respiration, moderate-severe O2 desats. (Simple OSA would be too easy. ;))

PR S1 ASV 950, DreamWear mask, F&P 150 humidifier, O2 @ 2L.

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Re: Update on Dad

Post by bwexler » Fri Mar 20, 2015 2:18 pm

I could never have your patience. I would call and insist on holding until a manager could come to the phone. When they disconnect instead of placing me on hold I would call back immediately. I find 3 or 4 consecutive calls will get someone out of the "meeting" to talk to me. I always escalate my request from the worker Bee to the senior bee to the manager, general manager, owner/president.
If the phone fails, just walk into their facility Monday morning with your specific RX in one hand and a pillow and blanket in the other hand. Let them know you will not leave til you have what you came for in hand.

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