a quadriplegic's questions about cpap

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
Coach

On message-board and self diagnosis

Post by Coach » Tue Oct 04, 2005 12:16 pm

Snooze,

You're absolutely right there's diagnosing going on. Jess and I, and I'm sure others, know the importance of gathering as much input as we can in preparation for seeing any doctor and especially a new doctor. There are duds and good ones with blind spots, too. Without a little (admittedly sometimes dangerous, sometimes even mistaken) knowledge we just don't know what to ask and, worse, can't know how to assess what we hear. That said, I assume your intent is to warn us not indiscriminately to accept each other's diagnostic guesses about one another. If that is your intent, you're right, and thanks.

Coach

power failure with CPAP

Post by Coach » Tue Oct 04, 2005 12:31 pm

Christine,

A couple of things.

1. I assume with power failure I can just remove my mask? Happily, I can get it off. And since I sleep without CPAP now, I'll then be able to go to sleep and be no worse off than I have been till now? Or will the mask being on and the power off create problems? Is that why the alarm? I'll ask my rep tomorrow.

2. On Cheyne-Stokes (Chenye-Stokes?): I've got some CHF, which is still mild. BiPAP does seem likely in my future.

3. As to saying how I do with CPAP, sure, I'll just extend this thread saying how it's going. Thanks for your interest.


snoozeandlose
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Post by snoozeandlose » Tue Oct 04, 2005 2:30 pm

Yes, my point is to educate yourself and weight all information carefully. I agree that educating yourself is crucial since no one physician or even 10 can know everything about everything i.e. my sleep doc who never heard of taping your mouth and didn't beleive I was serious when I said I did. By the way I am still waiting for the results of my sleep titration study done at the end of August. The DME informed me I was not supposed to know how to reset my machine. Duh, it doesn't take a $100 visit or whatever they want to charge my insurance company.

I have become such a better consumer since following the posts on this site. A big thanks to everyone for all the help.


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christinequilts
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Re: power failure with CPAP

Post by christinequilts » Tue Oct 04, 2005 3:27 pm

Coach wrote:Christine,

1. I assume with power failure I can just remove my mask? Happily, I can get it off. And since I sleep without CPAP now, I'll then be able to go to sleep and be no worse off than I have been till now? Or will the mask being on and the power off create problems? Is that why the alarm? I'll ask my rep tomorrow.
In normal situations, power outages are not that big of deal- espeically with nasal masks. With a full face mask, there could be problems if you didn't wake up right away to take the mask off...add in your additional problems, and it could possibly be a major problem. When the xPAP is running, the CO2 is getting washed out of the mask & when its not, too much CO2 can build up which is not good, and could potential make it even harder to wake up. If you live in a area with very few power outages, it probably isn't a concern; but if its like were I grew up were power outages were a fact of life, I would definantly want some sort of alarm or backup power source. Honestly, my best friend was recently put on CPAP with full face mask- I mentioned a backup or alarm system in passing to her as something she might want but isn't 100% necessary because it is not as much of an issue for an otherwise healthy person. I wouldn't say it is absolutely necessary in your case, but it is something to consider. Having worked in the insurance/case management field in the past, I would think it could be another plus for starting with a BiPAP that has the alarms. Being a person with multiple medical issues myself, I know that all too often the doctors & other medical professionals tend to forget that everything is connected together and may not consider all the ramifications of what they recomend. That is why its important to educate yourself and to have someone coordinate your care- especially when things get complex.

It does sound like a BiPAP is going to be needed- how soon is anyone's guess. They do have to prove to your insurance that CPAP doesn't work- even in my case with very clear severe CSA, they had to start my titration with CPAP just to prove it didn't help. In my case, my sleep doctor took a little different approach on getting insurance approval for my BiPAP ST- he lent me a machine for free for a month from the lab so it was clear that it was beneficial before we even got insurance involved. Considering BiPAP ST rent at over $600 per month and they knew I wasn't going to use the labs DME, it was a very nice gesture- plus it made getting approval much easier.

Respironics has an autoBiPAP coming out later this fall, so it might be beneficial to try CPAP until that comes out and we get see what it is all about. If you were going to get a regular BiPAP, I would recomend making sure it can be upgraded to BiPAP ST, if you need it in the future if the CSR (Chenye-Stoke Respiration- which is a specific type of CSA) and decreased muscle strength affects your breathing at night more then they are now. The only BiPAP I am aware of that has that ability is the Respironics Synchrony- Puritan Bennet also has a BiPAP that is suppose to have ST capabilities that is much cheaper too. If you want to read some info from ResMed about their AutoSet CS2 that is in FDA trials & CHF w/CSR, here is a link to their newsletter from 2003- http://newsletters.resmed.com/Newslette ... 0911r1.pdf


Coach

Outages

Post by Coach » Tue Oct 04, 2005 5:12 pm

Christine,

Oy. I'm in northern New York north of Watertown and there are FREQUENT outages, though they often last less than a minute. I'll definitely talk to the rep tomorrow about an alarm tomorrow. I wonder if I'm not going directly to BiPAP because of insurance. I'll ask my rep that, too. My doc knows him well, it seems, which I think will help us do this right. This site is almost overwhelmingly active, isn't it? I've read very few other threads. I read and post on an SCI (Spinal Cord Injury) site but there are so few of us that it's easy to read everything new. Here it must be awfully time-consuming, but the amount of help I've been offered proves there are quite a number of CPAPists more or less keeping up. Humans: so cruel, so stupid, so wise, so kind!


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Re: Outages

Post by christinequilts » Tue Oct 04, 2005 5:33 pm

Coach wrote:Oy. I'm in northern New York north of Watertown and there are FREQUENT outages, though they often last less than a minute.
If the power only goes out for a few seconds, I just hear a quick alarm & everything is fine...over a minute and I get the loud, wake up- something is wrong alarm that won't stop until I do something with my Synchrony. I think one minute is long enough that most machines wouldn't kick back on automatically- its definantly something to look into when deciding on your machine. I never realized for the longest time that all xPAPs didn't have alarms- it wasn't until someone mentioned in it in a post that I realized my mom's CPAP doesn't have one. I honestly think that they should have some sort of alarm- even my feeding pump beeps for a few seconds when the power goes off or is disconected and it has a built in battery (of course feeding pumps, much like IV pumps in the hospitals, can be a little to sensative when it comes to all their alarm settings...I wanted to throw the first one I got out the window more then a few times). Heck, I even have an alarm clock that makes a few short beeps if it gets unpluged...


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Post by Sergeant Bob » Wed Oct 05, 2005 1:12 am

Coach, I'm wondering if, since the main problem you have is low oxygen readings without major symptoms of of OSA, maybe just sleeping with O2 might not be effective for you.
When I was in the hospital recently I was on O2 and I slept like a baby. I have pretty bad OSA (my snoring shakes windows and my oxygen levels go to the low 60%) but when I was on O2 my wife actually had to get up and check to make sure I was breathing.
Just an idea, and it would be alot easier to deal with than fighting with a mask. Heck, some of us with full use of our hands have to battle with them.

Coach

just o2

Post by Coach » Wed Oct 05, 2005 9:02 am

Sgt,

I wish. I've been using O2 for 18 months and it doesn't do enough. Subjectively, I sleep fine, but the overnight oxymetry showed dozens of times I shifted levels of sleep. I waked this morning very much not looking forward to CPAP and wondering whether I will decide I should cut my ridiculously thin but 12- to 18-inch long hair to make donning the mask myself easier. The Lincare rep will be here in minutes.

Christine,

Thanks for the follow-up. Feeding pump?


Coach

just o2

Post by Coach » Wed Oct 05, 2005 9:02 am

Sgt,

I wish. I've been using O2 for 18 months and it doesn't do enough. Subjectively, I sleep fine, but the overnight oxymetry showed dozens of times I shifted levels of sleep. I waked this morning very much not looking forward to CPAP and wondering whether I will decide I should cut my ridiculously thin but 12- to 18-inch long hair to make donning the mask myself easier. The Lincare rep will be here in minutes.

Christine,

Thanks for the follow-up. Feeding pump?


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Post by ufo13 » Wed Oct 05, 2005 1:47 pm

COACH:

I can't think of anything to add to the great posts you have gotten already but i just want to wish you the best going forward the next few weeks to solve the O2 problem. The other thing i will add is WATERTOWN, NY oh brother - i was stationed one winter at FORT DRUM IN THE 60'S and i've never seen SNOW like you get up there except in UTAH!


Best to you,

steve,
ufo13

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Coach,

First home CPAP tonight and notes to posters

Post by Coach, » Wed Oct 05, 2005 2:41 pm

So I saw the Lincare rep today. It's early and problems remain but he's returning Friday. Tonight I'll use a nasal mask and experiment to see if I can get it back on after I take it off. I think with practice it'll function. At my sleep study the tech said I needed the full mask because of some mouth breathing but Fran, the rep, thought the nasal would help until we devise something better. Today was mostly him familiarizing me with the equipment and me him with my limitations and abilities.

Friday I'll be in bed when he gets here, which is where I'll be using CPAP, so he'll be able to get a clearer understanding of what I can and can't do. Plus he's calling his Respironics agent today. Really the essence of my problem seems to be my 1-handedness (except when I'm lying down, since when I'm not lying down I'm leaning on my second arm) and lack of pinch.

Guess what? I hate this! But expect to hate it less after a fairly brief stretch of being intermittently depressed. Now some individual notes

Rested, the mask straps you suggested seem unlikely to work. I can't put the lower strap around my neck before putting the mask on because I do everything 1-handed and can't snap most snaps button most buttons or velcro velcro. Something the clicked in and out may work, but we've not found it.

Jess, Fran explained to me that the first two conditions than make us breathe are first, CO2, and 2nd, lack of O2. Those of us who are shallow breathers and retain CO2 tend to adjust, so we tolerate higher than normal CO2 concentrations. We therefore depend on lack of oxygen to trigger us to breathe. If we're given oxygen, then both our primary signals we should breathe are de-activated, hence your experience. Does that seem right? I think the relatively small amount of oxygen I'm being given is okay.

UFO, there's actually more snow at Drum (and Watertown, its slogan when you were here "City of the Future," a daunting idea) and a little south, like Pulaski (its present slogan more or less "salmon fishing capital of the world"). We usually get significantly less here in Redwood, though only a slight shift in the wind off Lake Ontario and boom, we're in the snowbelt. Two years ago we got five or six feet in 3 weeks from Christmas into January but that was it. Drum's now huge, takes big planes.

Christine, there's no alarm on my CPAP but is a beep beep beep when my O2 goes off. It might not wake me but will get my attention if I wake enough. I brought it up with Fran and he thought the vents in the mask were adequate to make the masks safe. When I said I thought the CPAP masks saved many more than they killed, he was shocked and said he'd never heard of anyone dying because of wearing a mask. I kept pressing but didn't insist on having an alarm. Think I let him off too easy?

Snooze and Prof and whomever I missed, don't mean to leave you out. Whadda team whadda team! Thnx.


jess928

CO2

Post by jess928 » Wed Oct 05, 2005 3:35 pm

Coach,

Obviously you should do whatever works for you. I'm glad that you and your doctors are aware of the CO2 issues, because they can be insidious. One suggestion - if you're going to be taking O2 at night, you might want to get an end-tidal CO2 monitor. I don't know if they used this at your sleep study - they did at mine. It is a device that you can clip on to the exhalation port of your mask, and it will measure the amount of CO2 you are exhaling. That way you can know for sure if the extra O2 is causing you to retain CO2.

Have fun with your PAP (heh. heh. heh.)

Jess

Coach

fun

Post by Coach » Wed Oct 05, 2005 5:45 pm

Jess,

I admit that even though fun would be fun, it's not at the top of my list of expectations; but I've been wrong before. Heh heh back atcha. Wish me sweet dreams.

Coach

first night

Post by Coach » Thu Oct 06, 2005 2:05 pm

Fun, I didn't have. Big surprise, eh? I used the nasal mask and successfully replaced it twice in the night. My second hand was free when I was on my back, so I could get the mask in place and then pull the straps enough on to my head to keep it in place when I got up on my elbow to pull the straps the rest of the way on. I started at 10:40 P.M., managed to fall asleep, waked at 11:40 P.M. with my nose hurting but toughed it out and got to sleep until 2:30. I never dead (oops--that's a Freudian slip for "did") seem to sleep after that, but know I did. At 3 A.M. I gave up and took the mask off but at 3:30 put it back on and was surprised to find my nose no longer hurt. It still wasn't hurting at 4.

When I took the mask off for good at 6 A.M. my nose was sore again but no longer hurt when I waked for the day at 7. As I said, I felt like I hadn't slept since 2:30, but know I did since I didn't hear my aide arrive, heard her already in the kitchen at 7.

For a first night, I think not bad. The worst time was the beginning, at 10:40 P.M., and an overwhelmed stretch from 2:45 to 3:30. I'm not confident even now, but not feeling overwhelmed either. I'll try again tonight and see my rep Fran at 8 A.M. tomorrow. I'm not feeling overwhelmed, but I do still hate this. Too bad for me, heh heh.

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Post by rested gal » Thu Oct 06, 2005 2:41 pm

Coach, see if you can drag Fran out of the clutches of a no doubt well-meaning Respironics rep, and have Fran get you the ResMed Activa nasal mask to try for just one night. Might make all the difference in the world. Best sealing nasal mask of all, imho...the straps are worn very loose. Don't let the RT or the rep or anyone discourage you from trying an Activa with "Oh, that one would be too big and heavy..." etc. Just give it a try.