Which nasal mask did they have you try? If you can use just a nasal mask, the alarm isn't as much of an issue since you can breath through your mouth if something happens...can't do that with full face mask. Every mask says not to wear without being hooked up to a machine for a reason...and being hooked up to a non-working machine is every worse. At least if you have a mask on without being hooked up, you can get air through the mask/mask hose...when you are hooked up via the machine hose you can't get any air in except through the vents, which just isn't enough.
A lot of people think they are mouth breathers but do very well with nasal masks- there are a lot more available to pick from too. One that might work well for you would be the ResMed Swift- it is a nasal pillow mask. Once you have the headgear adjusted you will rarely ever need to readjust it- maybe after a month or so when the headgear starts to lose elasticity. There are no clips or anything- it pulls down into place faily easily and even if during the night you wanted to take a break, you can let it ride up above your nose without taking it completely off. It is one of the most durable masks I've used- there really isn't anything that can break on it even if it gets steped on. I used my Swift for over 6 months, until I got my ComfortCurve. ComfortCurve might also work, but the silocone check pads feel too tight for a lot of people- I ended up shaving mine down from the back side. The other problem is that the silicone check pads tend to fall off, if you're not careful taking it on and off. Its been forever since I used a regular nasal mask and I've never needed a full face mask, so I can't help much there.
Your hair can work to an advantage with some masks- including Swift. I just got several inches cut off mine (enough that they donate it for making wigs for children with medical problems)- I miss being able to loosely put it in a pony tail when I put my mask on and then taking the ponytail holder out so the hair is between the two straps & let the weight of the hair hold the lower strap in place...turning a disadvantage into an advantage!
Another thing you'll need are hose quick connects- https://www.cpap.com/productpage/hose-q ... nnect.html They make it easier to hook the hose up to the mask, machine & humidifier- much easier then the rubbery end of hoses.
Feeding tube is because I was unlucky enough to catch a flu bug that damaged the nerves to my stomach a few years ago. Everyone else who caught it got over it, but I basically never did. Not fun, but you have to deal with what life throws at you.
Christine
a quadriplegic's questions about cpap
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Coach
Christine and Rested
Jesus Christine, a feeding tube yet? Of course we do have to deal with what life throws at us, play the hand we're dealt and so on, but--well, I've read that (some?) Buddhists believe that the soul chooses the (about-4-month-old) fetus to inhabit that will provide it with the karmic challenges it needs. If your soul is getting what it aimed for, wow.
But back to me, a fascinating subject indeed. (I'm presently publishing the earlier of my two autobiographical novels on the SCI site I frequent. I'm posting a new chapter every Monday and there are six there now. At least two people have even read all six so far, so now I know I really am interesting. Heh heh, eh Jess?) I'll run the Res-Med products you (Christine)and Rested mention by Fran tomorrow. I mentioned this site and how active its board is to him and was surprised he didn't know about it. Telling him made it so that while I can still publicly trash him if he goes non-compliant on me, I can't be sure it'll be safely behind his back; he may lurk.
I mentioned earlier that I'd recovered from my 3 A.M. today deep funk by the time I waked. I didn't mention that on waking I ached like I had a bad UTI (Urinary Tract Infection, the bane of those of us who use in-dwelling catheters--see Christine, you mention your feeding tube, I counter with my catheter). I'm actually doing antibiotics for a UTI this week. A way I know I slept this morning after I took off the mask is that I was dreaming I was talking to my GP and suggesting I had a second organism making me symptomatic and that it was resistant to the Cephalexin I'm doing. Shut me up. Thanks again for the suggestions.
But back to me, a fascinating subject indeed. (I'm presently publishing the earlier of my two autobiographical novels on the SCI site I frequent. I'm posting a new chapter every Monday and there are six there now. At least two people have even read all six so far, so now I know I really am interesting. Heh heh, eh Jess?) I'll run the Res-Med products you (Christine)and Rested mention by Fran tomorrow. I mentioned this site and how active its board is to him and was surprised he didn't know about it. Telling him made it so that while I can still publicly trash him if he goes non-compliant on me, I can't be sure it'll be safely behind his back; he may lurk.
I mentioned earlier that I'd recovered from my 3 A.M. today deep funk by the time I waked. I didn't mention that on waking I ached like I had a bad UTI (Urinary Tract Infection, the bane of those of us who use in-dwelling catheters--see Christine, you mention your feeding tube, I counter with my catheter). I'm actually doing antibiotics for a UTI this week. A way I know I slept this morning after I took off the mask is that I was dreaming I was talking to my GP and suggesting I had a second organism making me symptomatic and that it was resistant to the Cephalexin I'm doing. Shut me up. Thanks again for the suggestions.
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jess928
Feeding tubes...I know about those. I just got one this summer. To make a long story short, the bipap, which I started using in January of ’04, somehow caused me to develop asthma. Never heard of that happening before, but it definitely happened to me – I saw a doctor the other day who FINALLY actually listened and tested me and I definitely have asthma. I am worried about controlling my asthma now, but I am also so relieved because I have been having breathing problems for nearly two years and had no idea why. Everyone seemed to think it was my condition deteriorating (which had never happened before, except for my needing the bipap). I got the feeding tube because all the asthma and breathing problems were making me so sick that I couldn’t eat and was losing weight. Hopefully with treatment my appetite will improve and I will feel better and be able to go to college in January (I was supposed to start in August but couldn’t because of my health). That would make me absolutely ecstatic, but I won’t count my chickens…
Coach and Christine, it’s nice to hear from the two of you about what you’ve been through. I look around at all my friends and they are so healthy and vibrant and totally unencumbered by physical barriers. My brother is 15, at least 6’2” and plays football and lacrosse. I try not to be jealous but I am...really I try but it’s just so hard to make your mind control your emotions. But people like you, and others I’ve talked to in similar circumstances to myself, give me hope that I can get through this without being permanently traumatized.
Good luck, Coach, and I hope you find a mask that works. Are you using a heated humidifier? I am a major proponent of those, as I suspect that the dry air flow from the bipap was what triggered my asthma. Hopefully my heated hose will come soon and I’ll be able to try turning the humidifier up higher.
By the way, where do you post your autobiography? You sound interesting.
Oh and chronic UTI’s...wouldn’t you know it, I know about those too. Less of a problem now though than they used to be...
Jess
Coach and Christine, it’s nice to hear from the two of you about what you’ve been through. I look around at all my friends and they are so healthy and vibrant and totally unencumbered by physical barriers. My brother is 15, at least 6’2” and plays football and lacrosse. I try not to be jealous but I am...really I try but it’s just so hard to make your mind control your emotions. But people like you, and others I’ve talked to in similar circumstances to myself, give me hope that I can get through this without being permanently traumatized.
Good luck, Coach, and I hope you find a mask that works. Are you using a heated humidifier? I am a major proponent of those, as I suspect that the dry air flow from the bipap was what triggered my asthma. Hopefully my heated hose will come soon and I’ll be able to try turning the humidifier up higher.
By the way, where do you post your autobiography? You sound interesting.
Oh and chronic UTI’s...wouldn’t you know it, I know about those too. Less of a problem now though than they used to be...
Jess
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christinequilts
- Posts: 489
- Joined: Sun Jan 23, 2005 12:06 pm
Jess-
If you want, you can PM me here if you want to talk about feeding tube stuff. I've been on both sides- worked in adult foster homes during college and had several clients on feeding tubes and now I've been on one for 4 years now. As much as I hate it, it is better then stuggleing to get enough calories in when you can't keep anything down.
And UTI's..know a little too much about them too. I had a congenital defect that made me more subceptable to UTI/kidney infections and lead to one of my kidney failing.
Ironically I earned my Masters degree in Rehabilitation Counseling to help people adjust to disability and have ended up with more personal experience then I ever wanted.
Christine
If you want, you can PM me here if you want to talk about feeding tube stuff. I've been on both sides- worked in adult foster homes during college and had several clients on feeding tubes and now I've been on one for 4 years now. As much as I hate it, it is better then stuggleing to get enough calories in when you can't keep anything down.
And UTI's..know a little too much about them too. I had a congenital defect that made me more subceptable to UTI/kidney infections and lead to one of my kidney failing.
Ironically I earned my Masters degree in Rehabilitation Counseling to help people adjust to disability and have ended up with more personal experience then I ever wanted.
Christine
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Coach
Diability in general, last night in particular
Jess and Christine and everyone,
The feeding tube easier, the asthma diagnosis a relief--I can relate. I was relieved when my docs and I decided to go with an in-dwelling catheter, not the options that were theorectically preferable but I thought in my case impractical. I'm older than Christine, two generations older than Jess, and that was a long time ago--not to be coy, 1965. I'm a strong believer in sometimes accepting the adequate rather than reaching too hard for the perfect, not that the asthma diagnosis is quite analagous to my preference for the in-dwelling Catheter or Christine's for the convenience of the feeding tube, but Jess's relief at hearing it kind of is.
Hm, I'm not smooth today. I slept badly night before last and worse last night--was awake I think 10 separate times in 9 hours--, am tired. I expect in a month I'll have pretty well adjusted to CPAP, but I better have. I'm not even quite certain I need it, which isn't really a help. I probably do, but my first pulmonologist, whom I liked and who impressed me, didn't think so. He's moved on, and I wish I could have him and my present guy argue it out in front of me. Most people seem to feel as I feel today, get diagnosed, do CPAP, and feel better. I felt fine, got diagnosed, was told to do CPAP, and damn.
My meeting with Fran was okay, not great. He was encouraged, says I'm doing better than he feared I would. He's going to think some more, talk some more, tinker, get me the nasal mask that's been suggested here, and return next Thursday. I'm going to keep on with the nasal mask I have and see if I get more comfortable. I can take it on and off, but I can't (yet) tell it's-hurting-because-I'm-getting-used-to-it from it's-hurting-because-a-strap-is-twisted.
Jess, the SCI site on which I'm posting THE HEALING is at http://www.spinalinjury.freeuk.com/homepage.htm So far the book's reception has been luke warm, but a few people seem to be reading it. The posts are labeled by Chapter, and Chapter 1 has drifted back to page 3, I think, of the Threads List. Six chapters are there now, and I post a new one every Monday. I hope you take a look. Shucks, I hope word sweeps the Net the book's there and first a trickle, then a flood . . .--but I'm not betting on it.
The feeding tube easier, the asthma diagnosis a relief--I can relate. I was relieved when my docs and I decided to go with an in-dwelling catheter, not the options that were theorectically preferable but I thought in my case impractical. I'm older than Christine, two generations older than Jess, and that was a long time ago--not to be coy, 1965. I'm a strong believer in sometimes accepting the adequate rather than reaching too hard for the perfect, not that the asthma diagnosis is quite analagous to my preference for the in-dwelling Catheter or Christine's for the convenience of the feeding tube, but Jess's relief at hearing it kind of is.
Hm, I'm not smooth today. I slept badly night before last and worse last night--was awake I think 10 separate times in 9 hours--, am tired. I expect in a month I'll have pretty well adjusted to CPAP, but I better have. I'm not even quite certain I need it, which isn't really a help. I probably do, but my first pulmonologist, whom I liked and who impressed me, didn't think so. He's moved on, and I wish I could have him and my present guy argue it out in front of me. Most people seem to feel as I feel today, get diagnosed, do CPAP, and feel better. I felt fine, got diagnosed, was told to do CPAP, and damn.
My meeting with Fran was okay, not great. He was encouraged, says I'm doing better than he feared I would. He's going to think some more, talk some more, tinker, get me the nasal mask that's been suggested here, and return next Thursday. I'm going to keep on with the nasal mask I have and see if I get more comfortable. I can take it on and off, but I can't (yet) tell it's-hurting-because-I'm-getting-used-to-it from it's-hurting-because-a-strap-is-twisted.
Jess, the SCI site on which I'm posting THE HEALING is at http://www.spinalinjury.freeuk.com/homepage.htm So far the book's reception has been luke warm, but a few people seem to be reading it. The posts are labeled by Chapter, and Chapter 1 has drifted back to page 3, I think, of the Threads List. Six chapters are there now, and I post a new one every Monday. I hope you take a look. Shucks, I hope word sweeps the Net the book's there and first a trickle, then a flood . . .--but I'm not betting on it.
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Coach
Diability in general, last night in particular
Jess and Christine and everyone,
The feeding tube easier, the asthma diagnosis a relief--I can relate. I was relieved when my docs and I decided to go with an in-dwelling catheter, not the options that were theorectically preferable but I thought in my case impractical. I'm older than Christine, two generations older than Jess, and that was a long time ago--not to be coy, 1965. I'm a strong believer in sometimes accepting the adequate rather than reaching too hard for the perfect, not that the asthma diagnosis is quite analagous to my preference for the in-dwelling Catheter or Christine's for the convenience of the feeding tube, but Jess's relief at hearing it kind of is.
Hm, I'm not smooth today. I slept badly night before last and worse last night--was awake I think 10 separate times in 9 hours--, am tired. I expect in a month I'll have pretty well adjusted to CPAP, but I better have. I'm not even quite certain I need it, which isn't really a help. I probably do, but my first pulmonologist, whom I liked and who impressed me, didn't think so. He's moved on, and I wish I could have him and my present guy argue it out in front of me. Most people seem to feel as I feel today, get diagnosed, do CPAP, and feel better. I felt fine, got diagnosed, was told to do CPAP, and damn.
My meeting with Fran was okay, not great. He was encouraged, says I'm doing better than he feared I would. He's going to think some more, talk some more, tinker, get me the nasal mask that's been suggested here, and return next Thursday. I'm going to keep on with the nasal mask I have and see if I get more comfortable. I can take it on and off, but I can't (yet) tell it's-hurting-because-I'm-getting-used-to-it from it's-hurting-because-a-strap-is-twisted.
Jess, the SCI site on which I'm posting THE HEALING is at http://www.spinalinjury.freeuk.com/homepage.htm So far the book's reception has been luke warm, but a few people seem to be reading it. The posts are labeled by Chapter, and Chapter 1 has drifted back to page 3, I think, of the Threads List. Six chapters are there now, and I post a new one every Monday. I hope you take a look. Shucks, I hope word sweeps the Net the book's there and first a trickle, then a flood . . .--but I'm not betting on it.
The feeding tube easier, the asthma diagnosis a relief--I can relate. I was relieved when my docs and I decided to go with an in-dwelling catheter, not the options that were theorectically preferable but I thought in my case impractical. I'm older than Christine, two generations older than Jess, and that was a long time ago--not to be coy, 1965. I'm a strong believer in sometimes accepting the adequate rather than reaching too hard for the perfect, not that the asthma diagnosis is quite analagous to my preference for the in-dwelling Catheter or Christine's for the convenience of the feeding tube, but Jess's relief at hearing it kind of is.
Hm, I'm not smooth today. I slept badly night before last and worse last night--was awake I think 10 separate times in 9 hours--, am tired. I expect in a month I'll have pretty well adjusted to CPAP, but I better have. I'm not even quite certain I need it, which isn't really a help. I probably do, but my first pulmonologist, whom I liked and who impressed me, didn't think so. He's moved on, and I wish I could have him and my present guy argue it out in front of me. Most people seem to feel as I feel today, get diagnosed, do CPAP, and feel better. I felt fine, got diagnosed, was told to do CPAP, and damn.
My meeting with Fran was okay, not great. He was encouraged, says I'm doing better than he feared I would. He's going to think some more, talk some more, tinker, get me the nasal mask that's been suggested here, and return next Thursday. I'm going to keep on with the nasal mask I have and see if I get more comfortable. I can take it on and off, but I can't (yet) tell it's-hurting-because-I'm-getting-used-to-it from it's-hurting-because-a-strap-is-twisted.
Jess, the SCI site on which I'm posting THE HEALING is at http://www.spinalinjury.freeuk.com/homepage.htm So far the book's reception has been luke warm, but a few people seem to be reading it. The posts are labeled by Chapter, and Chapter 1 has drifted back to page 3, I think, of the Threads List. Six chapters are there now, and I post a new one every Monday. I hope you take a look. Shucks, I hope word sweeps the Net the book's there and first a trickle, then a flood . . .--but I'm not betting on it.
Guess what guys....my asthma medicine is working....at least a bit. I'm trying not to get too excited. I've been let down before.
Coach, I hope you're doing better with the CPAP. Don't despair, it really does take time to get used to...believe me, I went through hell but I think I may have it ALMOST figured out. This took nearly two years. Not to discourage you - I don't think most people have it as tough as I did.
Christine - I'm sending you a PM.
Jess
Coach, I hope you're doing better with the CPAP. Don't despair, it really does take time to get used to...believe me, I went through hell but I think I may have it ALMOST figured out. This took nearly two years. Not to discourage you - I don't think most people have it as tough as I did.
Christine - I'm sending you a PM.
Jess
Re: a quadriplegic's questions about cpap
Hello....from the future. I wonder how any of you who participated in this thread are doing, or if you will ever see this post. But 2022 me, quadriplegic about to start cpap, is deeply appreciative of your insights and advice.
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ChicagoGranny
- Posts: 14463
- Joined: Sun Jan 29, 2012 1:43 pm
- Location: USA
Re: a quadriplegic's questions about cpap
Most of them were posting as guests, so they will not get notifications that this thread has been revived.
I suggest you start a new thread of your own. Members will be able to easily track your history as you continue through the process of adopting CPAP.
Welcome!
Re: a quadriplegic's questions about cpap
To Granny
I don't mean to hijack this thread but I need your help.
When I try to send an email, I receive a response saying "your email has been sent" but then it sits in the outbox for hours without being dispached. What am I doing wrong? Any tips? Sorry to bother you with this but I am really frustrated and have spent a lot of time trying to figure it out.
Thank you
Clownbell
I don't mean to hijack this thread but I need your help.
When I try to send an email, I receive a response saying "your email has been sent" but then it sits in the outbox for hours without being dispached. What am I doing wrong? Any tips? Sorry to bother you with this but I am really frustrated and have spent a lot of time trying to figure it out.
Thank you
Clownbell
_________________
| Machine: ResMed AirSense™ 10 AutoSet™ CPAP Machine with HumidAir™ Heated Humidifier |
| Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear |
ResMed AirSense 10 Autoset with built in humidifier
Resmed P10 pillow mask
Resmed P10 pillow mask
Re: a quadriplegic's questions about cpap
Not Granny but I can help with this one.
When you send a private message to someone it will sit in YOUR OUT BOX until the recipient actually opens it and reads it and THEN it will move automatically to your SENT box.
It's your way of knowing when your private message has been received by someone.
It's normal forum operational feature.
Sometimes the person you send the private message to just simply hasn't been online to open their In Box to see your private message.
It will move to the sent box though as soon as the person reads it.
_________________
| Machine: AirCurve™ 10 VAuto BiLevel Machine with HumidAir™ Heated Humidifier |
| Additional Comments: Mask Bleep Eclipse https://bleepsleep.com/the-eclipse/ |
I may have to RISE but I refuse to SHINE.
If you want to try the Eclipse mask and want a special promo code to get a little off the price...send me a private message.
If you want to try the Eclipse mask and want a special promo code to get a little off the price...send me a private message.
Re: a quadriplegic's questions about cpap
Thanks, Pugsy, I received the same reply from Granny. I would have never guessed it. Learned something today. 
_________________
| Machine: ResMed AirSense™ 10 AutoSet™ CPAP Machine with HumidAir™ Heated Humidifier |
| Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear |
ResMed AirSense 10 Autoset with built in humidifier
Resmed P10 pillow mask
Resmed P10 pillow mask