Update on Dad

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

Post by HoseCrusher » Tue Mar 24, 2015 5:18 pm

WOW!!! Look at the progress you have made...



OK, here is a magnifying glass. Look harder...


This is unbelievable.

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chunkyfrog
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Re: Update on Dad

Post by chunkyfrog » Tue Mar 24, 2015 5:32 pm

I'm crossing my fingers for you.
---Ouch, forgot about those webs!

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BleepingBeauty
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Re: Update on Dad

Post by BleepingBeauty » Tue Mar 24, 2015 5:43 pm

HoseCrusher wrote:WOW!!! Look at the progress you have made...



OK, here is a magnifying glass. Look harder...


This is unbelievable.
Look harder, indeed.
chunkyfrog wrote:I'm crossing my fingers for you.
---Ouch, forgot about those webs!
Thanks again, CF, but I thought frogs only had toes...

Speaking of frogs, I want one of these squeaky toys for myself: https://www.youtube.com/watch?v=HBxn56l9WcU
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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wilsonintexas
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Re: Update on Dad

Post by wilsonintexas » Tue Mar 24, 2015 6:30 pm

You are almost there.

On the facemask, you might consider the following mask:


The Oracle HC452 Oral CPAP Mask is a unique mask which delivers CPAP therapy through the mouth only. It features diffused exhalation, an adjustment dial, and single strap headgear

If he is having problems getting the headgear on, this one goes into the mouth, it may be easier to have him put on. There are no prongs to put in the nose, and I think it less claustrophobic than most. There is less stuff fitting across the face.

I have not tried it, so it is an uninformed opinion.

I seem to remember a hybrid mask that was a mouthpiece and had nasal prongs. I think that it was 'strapless'. I looked on CPAP.com and do not see it.

It cold also be that It never existed.

Good luck and keep us informed.

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archangle
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Re: Update on Dad

Post by archangle » Tue Mar 24, 2015 7:06 pm

The Oracle is unique and has some advantages, but it can dry out your throat, and the feeling of not breathing through the nose was uncomfortable to me. Your have to use nose plugs or learn to block your nose off internally when you put it on. There's some info in the Useful Links in my signature line below.

It can be a miracle or unusable depending on the person.

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BleepingBeauty
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Re: Update on Dad

Post by BleepingBeauty » Tue Mar 24, 2015 7:30 pm

wilsonintexas wrote:You are almost there.

On the facemask, you might consider the following mask:


The Oracle HC452 Oral CPAP Mask is a unique mask which delivers CPAP therapy through the mouth only. It features diffused exhalation, an adjustment dial, and single strap headgear

If he is having problems getting the headgear on, this one goes into the mouth, it may be easier to have him put on. There are no prongs to put in the nose, and I think it less claustrophobic than most. There is less stuff fitting across the face.

I have not tried it, so it is an uninformed opinion.

I seem to remember a hybrid mask that was a mouthpiece and had nasal prongs. I think that it was 'strapless'. I looked on CPAP.com and do not see it.

It cold also be that It never existed.

Good luck and keep us informed.
Thanks for the suggestions. I've considered an oral mask for Dad, and that may be the way we end up going. What I really like about the Oracle is that there's only one headgear strap (if you even choose to use it - the possibility of wearing/using the mask without any headgear at all is VERY appealing for someone who has claustrophobia). The only thing I don't like about the mouthbreathing (purposely with the Oracle, of course) is the drying effect it has; I would think that would make anyone very uncomfortable, and my preference would be for Dad to use a "regular" mask for his therapy, encouraging him to breathe nasally. He's gotten pretty used to the P10 I've had him wearing, and I'm glad he's been able to tolerate it because it'll make things easier for him if he's already used to wearing any mask. I love that it's so minimal, but the large pillows aren't large enough; I really wish there was an extra-large for it, because the P10 would then be near-perfect for him.

I considered the Hybrid, as well (that's the mask I use and love, myself), but I think the headgear is too much to ask of him (yes, it has headgear, as does the other "hybrid" out there, the Mirage Liberty).

He's keeping the P10 on all night, thankfully; I hope his positive experience with it will help him better tolerate whatever mask he ends up using. He's not getting totally effective therapy with it, but he is using the machine, and his AHI is generally between 5-10. He's certainly not there yet, but he's getting much better sleep than before (his AHI was 56 during the at-home sleep study).

I need to tweak things (and I will).

Thanks 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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BleepingBeauty
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Re: Update on Dad

Post by BleepingBeauty » Tue Mar 24, 2015 7:39 pm

archangle wrote:The Oracle is unique and has some advantages, but it can dry out your throat, and the feeling of not breathing through the nose was uncomfortable to me. Your have to use nose plugs or learn to block your nose off internally when you put it on. There's some info in the Useful Links in my signature line below.

It can be a miracle or unusable depending on the person.
Thanks for that info. It's definitely a "love it or hate it" kind of mask; don't imagine there are any "meh" opinions among those who've tried it.

I watched the video on fitting and saw the nose plugs they use; I was thinking a swimmer's nose plug would be more comfortable (worn outside the nostrils rather than inside) and just as effective (provided you can get used to mouthbreathing on purpose, of course). It's something to think about. I'll see if Dad even finds the idea appealing.

Thanks 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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BleepingBeauty
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Re: Update on Dad

Post by BleepingBeauty » Wed Mar 25, 2015 7:39 pm

Believe it or not, Dad got his equipment today.

I got the machine I wanted for him, but not the mask (I'd asked for a FitLife). I told the RT who called this morning (to tell me he would be here today) that Dad likely needed the Large from what I found online for a sizing guide. Of course, he showed up with a Small, put it up against Dad's face, and confirmed that he does need a Large. He told me the Small was all they had wherever he went to pick up supplies, so that's what he got. I made him write on the paperwork I signed that he'd get Dad the Large to try ASAP. In the meantime, he gave him an Airfit F10 (a FFM); it's not what I had in mind for Dad, but it doesn't seem to leak, and Dad's tolerated it well so far (this afternoon while watching tv). We'll see.

We got the usual know-nothing answers from the RT to the usual questions. He said he was completely unfamiliar with any APAP, that he's only comfortable with CPAP machines, and he referenced the paperwork (booklets) and made phone calls to get answers he didn't have. He put the HEPA filter in backwards, told me that the filters get replaced every few months, that the white one will get dirty and you just flick it with your fingernail to clean it and then put it back in again , that OptiStart and Auto Start are the same thing (they're not), etc.

I asked him where the vented air came out of the FitLife, and he looked at me like I was living on Mars. First, he told me there was no vent on the mask at all. Really? Then he said the air comes out of the anti-asphyxiation valve. Seriously. I corrected him about what that valve is for, and then I asked where the exhaled CO2 goes, and he just looked at me blankly... Oy. When I briefly looked at the mask, myself, I couldn't find any vent holes; I think the air must come out of the area where the elbow is affixed, but I'm not sure. Dad never tried it on, so I never had the opportunity to feel any vented air coming from it. I looked through the mask's booklet a bit, but I didn't see anything about intended vent (leak rates); I just think I didn't look hard enough or long enough, knowing Dad wouldn't be keeping the Small. The fact that the RT was clueless is the point. FWIW, he said it's the first time he's ever seen that mask. You're an RT, you're fitting people with this shit all day long, and you don't know what's out there for options? It's not like the FitLife just came out yesterday. SMH

Don't know how long it'll be before I see the FitLife in a Large size, but as long as Dad's okay with the F10 for now, I'm fine, too. Mentally, he's ready to throw up his hands and be done with all of it (the xPAP struggle, seeing doctor after doctor, taking pill after pill, and still feeling debilitated and useless). I told him that, quite frankly, he's nearly 86 and can certainly say, "No more!" and just let nature take its course from now on; stop all the doctor visits, stop taking the pills, forget the xPAP, etc., but that he has to understand that none of us knows what the result will be. It could be better, or it could be much worse. (He's had several moments like this since I've been here with him, when he just gets so fed up with everything that he threatens to stop all of it; but then he seems to back off and keep on keepin' on.)

I implored him to give the xPAP a solid two weeks before he decides he's had it. I told him that for most of us, it's not an overnight fix (no pun intended) and it can take some time to feel better. I also keep telling him that he'll have a chance of physical recovery only if he's getting good sleep, so he needs to give this a real chance and see if it helps. He agreed, so I'm hopeful. I'll probably have this same conversation with him every day (maybe several times a day) because his memory is really failing, but I'll repeat it as often as necessary and encourage him to keep trying. That's all I can do. (Although, if push comes to shove, I could employ the guilt card. I was raised Jewish, so I'm very familiar with guilt. If/when Dad says he's done with therapy, I could utilize all the rigmarole I went through just to get him set up, with hopes that he'd agree to keep trying to make it work. <I'm evil> )

Wish us luck.
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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BleepingBeauty
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Re: Update on Dad

Post by BleepingBeauty » Thu Mar 26, 2015 5:25 am

Well, that was fun while it lasted...

Dad put the the F10 on last night but, when I went in to check on them and say goodnight a little while later, he had the mask in his hand. My mother said he suddenly got crazy from the claustrophobia and wanted it off immediately, so she helped him take it off. He was agitated about it and wanted to just chuck everything at that moment, but I gave him back the P10 I brought with me (the one he's been using, although it doesn't fit him well), and he put it on. I just went in to check on him a few minutes ago, and it sounded like the machine was not running but, on closer inspection, it actually was (is it possible that it's too quiet? ). He's still got the P10 on now, so that's a bonus.

I have no idea how the FitLife might work (or not) for him, but I want to find out, and soon. It's obvious that the F10 isn't the right mask for him (big surprise), so I have to try to get something that fits him and gives him decent therapy. He's got to start getting effective treatment so he can see how important the therapy is and feel the positive difference it makes or I'm going to lose this opportunity to finally get him on a machine. This process has been years in the making (he resisted having a sleep study done for forever), and now, to be so close... <fingers/toes/eyes crossed that this works out>

Can't help but think that if Dad had started therapy even just a year ago, he wouldn't be dealing with the memory issues he now has. Makes me sad.

Are there any other masks you guys can suggest I try for him? He's claustrophobic, has long nostrils (the Large pillow leaks) and sometimes mouthbreathes (although I think he's doing less of that now). I did mention the Oracle to him and tried to explain how it works; I think I'll show him the fitting video and see if it appeals, but he's very fastidious about his teeth, so he may dismiss that mask outright. (I don't like the dry mouth factor of the Oracle but, if it can work for him and he's willing to try, I'll go for it.) I'd certainly consider a regular nasal mask, but I fear the claustrophobia will be a factor with that type of mask, too...
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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TexasTom
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Re: Update on Dad

Post by TexasTom » Thu Mar 26, 2015 5:57 am

Bleeping.... You are a wonderful daughter.

Something tells me you could even get Apria straightened out!

Keep up the good fight. Now only if I could get you to Austin, TX to keep kicking my rear until I start working out for an hour a day. Irony best prevention against the progression of Parkinsons is working out daily. Just need to keep moving!

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archangle
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Re: Update on Dad

Post by archangle » Thu Mar 26, 2015 7:16 am

http://www.healthcare.philips.com/main/ ... efault.wpd

Note the "built in radial diffusion leak ports" note. That looks like the exhaust port. It might be a neat idea since it spreads it around.

Image

With the Oracle mask, it might be a good idea to have a good rinse with Listerine before and after masking up to help with consequences of dry mouth.

Watch the sizing and adjustment on the Oracle. There are different sizes of the mouthpiece, and there's a screw adjustment that tightens and loosens its grip on your lips.

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Pugsy
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Re: Update on Dad

Post by Pugsy » Thu Mar 26, 2015 7:37 am

Look at the Pilairo Q nasal pillow mask...the pillow has a more slotted inner cone and the way it is made it is overall very forgiving for those that need a larger size.
I gave mine to a forum member I met in person who had the same problem with the regular Large nasal pillows and his large slotted nostrils and believe me...his were huge ( I had initially thought he was joking ) and it could have worked for him if he could have kept his mouth closed.

Your dad may not tolerate a FFM due to the claustrophobia issues and even if he mouth breaths some with a nasal pillow mask it might not mean that the therapy is in the toilet all the time. Even if it was in the toilet for a short period of time it would still be preferable to have that and have most of the night be okay than not using the machine for the bulk of the night because the mask is totally off his face.

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robysue
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Re: Update on Dad

Post by robysue » Thu Mar 26, 2015 7:54 am

Pugsy wrote: Your dad may not tolerate a FFM due to the claustrophobia issues and even if he mouth breaths some with a nasal pillow mask it might not mean that the therapy is in the toilet all the time. Even if it was in the toilet for a short period of time it would still be preferable to have that and have most of the night be okay than not using the machine for the bulk of the night because the mask is totally off his face.
I second everything Pugsy says here.

Before dismissing the P10 or any other nasal pillows mask, it's important to look at the leak line your Dad is getting with the nasal pillows mask. If the leaks are staying out of the official Large Leak territory for most of the night, they won't matter in the long run if it allows your father to sleep with a mask on his nose. And even if the leaks do go into Large Leak territory for 20-30 minutes here and there, that's still better than sleeping with NO mask for the entire night because of claustrophobia issues.

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BleepingBeauty
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Re: Update on Dad

Post by BleepingBeauty » Thu Mar 26, 2015 8:23 am

TexasTom wrote:Bleeping.... You are a wonderful daughter.

Something tells me you could even get Apria straightened out!

Keep up the good fight. Now only if I could get you to Austin, TX to keep kicking my rear until I start working out for an hour a day. Irony best prevention against the progression of Parkinsons is working out daily. Just need to keep moving!
Thanks, Tom. I've always had a soft spot for Dad (we're very much alike, personality-wise, and I've always been close to him), and I'm glad I'm here to help with all of this (and everything else). Can't say I'd put this much effort into Mom, if she was in the same place; I like to think I would, but...

She installed all my buttons, so she knows where to push (and she does just that, on a regular basis). So I'll agree that I'm a good daughter when it comes to Dad, anyway.

Sorry I can't help you with the butt-kicking to make you work out. I can't even do that for myself!

Dad was tested for Parkinson's because he's developed the "shakes" at times (tremors?), but the result was negative. When he starts to shake, I notice that his breathing is a bit ragged; he's not hyperventilating, but he's breathing more rapidly than anyone should. At those times, I remind him to breathe deeply and slowly, and he usually calms down and stops shaking. So far, that's working. Now, if I could just get his therapy in line, I'd be a very happy camper and would gladly move on to just dealing with the other things.
archangle wrote:http://www.healthcare.philips.com/main/ ... efault.wpd

Note the "built in radial diffusion leak ports" note. That looks like the exhaust port. It might be a neat idea since it spreads it around.

<snip>

With the Oracle mask, it might be a good idea to have a good rinse with Listerine before and after masking up to help with consequences of dry mouth.

Watch the sizing and adjustment on the Oracle. There are different sizes of the mouthpiece, and there's a screw adjustment that tightens and loosens its grip on your lips.
Thanks for that, archangle! That's exactly where I thought the exhausted air would come from (having not found any other vent holes), but the RT had no idea. I don't know how I missed that graphic, but thanks for posting it!

As to the Oracle, I don't know if the idea even appeals to Dad. It appeals to me if only because the headgear is so minimal (and/or not needed at all), but I don't know if Dad could tolerate the mouthpiece. I will show him the fitting video and see if he's interested in it.

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

I seem to remember (years ago) somebody saying that the Breeze pillows could be used in another mask (maybe the Swift FX?), but I don't remember the details. After a bit of searching, I found this thread, but it's Swift LT and not the FX: viewtopic.php?p=433248#p433248. Maybe I'll try to modify the P10 with the Breeze XL pillows. The P10 came with an extra base, so if I ruin the one I cut, I won't have ruined the mask altogether.

Just call me MacGruber.
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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BleepingBeauty
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Re: Update on Dad

Post by BleepingBeauty » Thu Mar 26, 2015 8:42 am

Pugsy wrote:Look at the Pilairo Q nasal pillow mask...the pillow has a more slotted inner cone and the way it is made it is overall very forgiving for those that need a larger size.
I gave mine to a forum member I met in person who had the same problem with the regular Large nasal pillows and his large slotted nostrils and believe me...his were huge ( I had initially thought he was joking ) and it could have worked for him if he could have kept his mouth closed.

Your dad may not tolerate a FFM due to the claustrophobia issues and even if he mouth breaths some with a nasal pillow mask it might not mean that the therapy is in the toilet all the time. Even if it was in the toilet for a short period of time it would still be preferable to have that and have most of the night be okay than not using the machine for the bulk of the night because the mask is totally off his face.
Thanks, I'll check out the Pilairo for Dad.

I knew before we started the fitting that the F10 was going to be a problem for him, but I hoped against hope... He was fine with it while he was awake, but as soon as the lights went off, so did he.
robysue wrote: I second everything Pugsy says here.

Before dismissing the P10 or any other nasal pillows mask, it's important to look at the leak line your Dad is getting with the nasal pillows mask. If the leaks are staying out of the official Large Leak territory for most of the night, they won't matter in the long run if it allows your father to sleep with a mask on his nose. And even if the leaks do go into Large Leak territory for 20-30 minutes here and there, that's still better than sleeping with NO mask for the entire night because of claustrophobia issues.
Agreed. In fact, I've had Dad using the P10 up until now simply because he was willing and able to tolerate it, even though it's leaking more than I want it to. I had the same line of reasoning you do - that he's better off with some decent therapy than none at all. The LL hasn't been too bad, and the leak line isn't as flat as I'd like it to be, with spikes for much of the night, but it's within reason.

My goal at the moment is not to just tolerate the leaking he's experiencing and be happy that he's using a machine at all, though, because he's not feeling the benefits of a good night's sleep yet, and I think that will be key to him continuing the therapy. He's been using my old machine since I got here (over eight weeks now). The leaks, themselves, are not the problem; it's the absence of results that concerns me. Right now, I think he's placating me by using the machine because I keep telling him that good therapy will make him feel better during the day and enable his mind to work a bit better than it is. So if that doesn't materialize, he's gonna feel like the machine is just one more PITA thing he has to deal with (for no realized benefit) and is likely to stop the therapy altogether.

My parents think I'm a little nuts because I'm putting so much effort into this, but I really want this to help Dad cope with all the other shit he has going on...

Thanks to both of you for the input/ideas.
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.