My Husband and Sleep Apnea....I need you help

[DreamOn]

frtwome,

I wish your husband all the best. What a wonderful Christmas gift this is for both of you. I hope he does really well with his therapy and feels more like his "former self" very soon. I know this has been a difficult path for you both.

Also, I use the Mirage Activa LT mask. One thing that's very important is not to secure the straps too tightly with this mask. Adjust the top (there's a dial to move the mask closer or farther from the nose bridge) and then pull in the bottom straps JUST past the point where it leaks--no more. The mask almost "floats" on the face. If he does develop any nose bridge soreness, it could be that the mask isn't quite the right size, it's not adjusted quite right, or he may need something between mask and bridge of nose to protect his skin. I love the Activa LT when it's adjusted right.

Once he gets situated and accustomed to everything, if his machine can report "leak rates" and other data, we can teach you how to read that information. I don't think you ever mentioned which machine he has exactly, so I don't know if it is one that's capable of reporting full data. I believe you said earlier that he breathed through his mouth during the titration study, so he may find that he has a problem with mouth leaks (therapy air escaping from his mouth), so keep an eye out for that, as it could make therapy less effective. He may not even be aware that it's a problem if it mainly happens when he's in deep sleep. We can offer some tips if that occurs. Or he may have to try the full face mask. I know they can be more difficult, but there are many people here that do use them successfully.

I mentioned in an earlier post about condensation forming in the hose. Since it's wintertime, you'll probably find you'll need a hose cover to insulate it from the cooler room air. The condensation is called rainout, and it isn't pleasant when the water goes up your nose!

I hope that David woke up refreshed from his nap! He has a lot of sleep to catch up on! I hope you'll be sleeping more soundly soon too. Please remember that we're always here if needed.

~ DreamOn

[dsm]

Hi Dori,
Guess what, DME was here at noon today very very nice man, He talked with us both, but the best part was that he listened to what David's fears were. He didn't give in to less then what David's doctor required, except for the mask. David told him just how much that he was really against wearing the full face mask. And the DME agreed that the full face is very hard to get use to. He fitted David with a Resmed Mirage Activa. But David & the DME agreed with one another that if this mask does not work good enough to bring the apnea events down quick enough, that David will use the full face.
Right now David is sleeping with the mask & machine on. Dori, I am so use to hearing so mush noise coming from David that I have to know. The first night that your husband used it, was he unusally quiet? I have been in there to check on David every ten minutes, because it's kind of scary not hearing the sounds that I am use to. He went in there to nap at 3:30pm today, and now at 6:08pm his is still sleeping with no interuptions, I don't know what to think of this. If this is real sleep that David is getting right now, he will be thrilled. This is so exciting, but yet a little scary, no knowing for sure.
Thanks,
Judy

Judy, I know how anxious you are to get started and hopefully if the stars are in alignment by now you'll have something set up for tomorrow or the latest Thurs. I think it may be a good idea to stay with the DME for now if just for the mask exchanges if necessary(most have a 30day exchange policy) and any hands-on assistance you might get from them if you're lucky enough to get a knowledgeable RT. Once you actually have the equipment and start asking questions here you'll be on your way. Keep us posted, you're with you.

Judy

This is sounding very very good !!!.

It will be the most wonderful Christmas news if hubby suddenly sees he can have a new life & how to do it !!!.

Merry Christmas + lots of happiness to you both

DSM

[goose]

Hey Judy,
Yes!! What he is experiencing is good sleep!!!!!! That's fantastic!!!!! What you shouldn't hear is snoring!!! You'll hear the machine ebb and flow as he breathes, but it should be pretty quiet compared to what you're used to.....

To add some to what DreamOn said. With the Activa LT or the Straight Activa you want to make sure the mask straps are not too tight. That forehead piece has 3 or 4 notches (the LT has a dial) which will move the mask either closer or further from his face. For me I needed it as far away as I could get it, but it depends on how the face is shaped. (if he moves it too far and the piece comes off, it's easy to put back -- in fact it's one of the things you'll dismantle to clean it).
The easiest way to tell if the Activa mask is adjusted ok is that when it is on and inflated, he/you should be able to reach up and that "puffy" loop around the edge should be inflated so that you can squeeze it (that's how I adjust it on my face after inflation so it doesn't leak.....just squeeze the "balloon" and let it re-inflate.). If it's flattened out and not "squeezable" then the mask is too tight and the "Active Cell" is not doing what it needs to do in order to seal......
For me, the greatest thing about the Activa (LT) is that when I turn from side to side it doesn't start leaking. That inflatable part just kind of moves a little bit with me and retains the seal it has....
Will it leak?? Yup!!! Mine leaks sometimes, but so far it's the most comfortable mask I've found, and it leaks the least of any mask I've used!!!!
Size is also important. If it's too large, ask for a smaller interface.....In the LT the smaller interface is counter intuitive and called the "Large-Wide"....I don't remember what it's called in the Activa, but it's the same piece - just named differently!!!

Merry Christmas Judy, to you both. It sounds as though he'll be on his way to better and more restful sleep. Now you just have to get used to it being quiet!!!!
Take care
cheers
goose

[DoriC]

Hi Judy, good news about the DME and David's willingness, I'm so happy for you even though getting started is a very scary business for spouses watching and waiting and not knowing exactly what they're supposed to be observing or adjusting. I don't know much about masks other than FF but I know the Activa is a popular one here. Hopefully David will not mouth breathe and his mask will suit him,that's the tricky part. When Mike had his titration study the tech told me they started him with an Activa I think, but during the night they had to change him to a FF because his jaw dropped open in REM and the whooshing noise scared him so much he was happy to wear the FF and never questioned it again. I'll also confess that I had many sleepless nights waking and checking to see if he was really OK. He was pretty out of touch with what this therapy was all about. Even though I could hear the machine and see the rise and fall of his chest, I kept waiting for the snores, silences, gasps and restless movements that I was used to which never came. I must admit I kind of wore myself out with lack of sleep until our Dr gave me a stern lecture and truthfully told me that Mike was looking healthier than me and that he wouldn't suffocate, the worst that could happen is he might take his mask off during the night(that's all he knew how to do) which did happen a few times in the beginning. Of course today is an exception for you but I found it's best to try to keep to a normal sleep and nap schedule. Mike naps for about an hour or so in late morning and then he's good until bedtime about 11PM and sleeps until about 8AM. Hope this helps, take a deep breath, Dori

[dsm]

DoriC

Great that your hubby is progressing well. It would be interesting to hear your thoughts again on what you think his attitude is to cpap now (today) since he has now been using it for quite a while. Will he admit to being 'wowed' ?

Cheers

DSM

[JohnBFisher]

It's great to hear you and your husband had a good experience with the DME.

... I have been in there to check on David every ten minutes, because it's kind of scary not hearing the sounds that I am use to. ...

It's wonderful to hear someone other than my wife say that!!

It's pretty clear when I need a new sleep study. When my wife keeps waking me because I'm not breathing, it's time to get the study. But with every new machine she keeps checking to be certain I'm breathing, because my breathing is so much more quite and stable.

The good news is that it is a very, very good sign.

... He went in there to nap at 3:30pm today, and now at 6:08pm his is still sleeping with no interuptions, I don't know what to think of this. If this is real sleep that David is getting right now, he will be thrilled. ...

The very first time I got my CPAP, I slept for about 10 hours the first night. I then took off several days from work and slept 10 hours each night and took naps in the afternoon. I suspect my wife wondered if I had developed narcolepsy!

Here's hoping the rest of his nap went well and he continues to sleep well.

[DoriC]

DoriC

Great that your hubby is progressing well. It would be interesting to hear your thoughts again on what you think his attitude is to cpap now (today) since he has now been using it for quite a while. Will he admit to being 'wowed' ?

Cheers

DSM

You've made me ponder that question because Mike doesn't volunteer too much about the improvements in his quality of life(he's a quiet man and I also think he's superstitious) unless I make a point of asking him and then he'll say he "feels great", music to my ears! He just finished reading a book about Joe DiMaggio(he loves the Yankees) and did tell me how good it feels to read again. But best of all is his attitude at bedtime, the anxiety is gone, he's calm and confident and although he's never been too interested in the mechanics, he reminds me to check the water level, adjusts his mask himself and understands quite a bit about the reports now. It's a gradual process, some improvements are startling and some are more subtle but it's all good. As I mentioned in another post in case you missed it, he calls his mask his "girlfriend"! He's another Tiger Woods!

[BlackSpinner]

Dori, I am so use to hearing so mush noise coming from David that I have to know. The first night that your husband used it, was he unusally quiet? I have been in there to check on David every ten minutes, because it's kind of scary not hearing the sounds that I am use to. He went in there to nap at 3:30pm today, and now at 6:08pm his is still sleeping with no interuptions, I don't know what to think of this.

The first time my daughter came home at 3 am from a party she rushed into my room thinking there was something wrong with me because for the first time in her life she couldn't hear me snoring. Yes I was still alive, sleeping peacefully.

It seems he is taking to it really well, some of us do - I slept 10 hours the first time I put it on and normally it took me hours to fall asleep. He may sleep a lot for the first few weeks, catching up on what is called "sleep debt".

It was smart to try it with a nap, there is not so much drama around a nap.

[frtwome]

Hi DreamOn,
Thank you very much.
Now is when I want to learn everything possible with David's therapy. Now that we have the machine, mask & etc. The machine that he has is a Respironincs auto Bipap m-series biflex with smart card, and heated humidifier. DME said the pressure was set at 16. (doctors prescription) It is a used machine, but only has a liitle over one hour use on it. It came with a 6' hose, carry bag. And a new Resmed Mirage Activa mask. The total cost was $900.00
If it has a way to detect leaks, that would be great, so that I know this. And I would love to know how to follow the data myself. DME said that he can keep track of David's progress, over a period of every three months, and will report it to David's doctor and us, because the machine does have the smart card. How can I do this myself?
So far he has been sleeping on his back, and his mouth is closed. He does like to sleep on his side, but right now he is saying that the mask isn't moving correctly with him when he tries to change positions. He hasn't really complained much about the mask, I just wish that I knew for sure that it isn't leaking at all. I will have to go out today to buy the insulation for the hose, so that I can make sure of no condensation. And I was told to use only distilled water in the humidifier. And wash the water container out once a week with a little white vinegar & water. Wash the mask with a mild clear soap & water daily.
So far everything is good, and it is the best Christmas gift ever.
Thank you again,
Merry Christmas to you.
Judy

frtwome,

I wish your husband all the best. What a wonderful Christmas gift this is for both of you. I hope he does really well with his therapy and feels more like his "former self" very soon. I know this has been a difficult path for you both.

Also, I use the Mirage Activa LT mask. One thing that's very important is not to secure the straps too tightly with this mask. Adjust the top (there's a dial to move the mask closer or farther from the nose bridge) and then pull in the bottom straps JUST past the point where it leaks--no more. The mask almost "floats" on the face. If he does develop any nose bridge soreness, it could be that the mask isn't quite the right size, it's not adjusted quite right, or he may need something between mask and bridge of nose to protect his skin. I love the Activa LT when it's adjusted right.

Once he gets situated and accustomed to everything, if his machine can report "leak rates" and other data, we can teach you how to read that information. I don't think you ever mentioned which machine he has exactly, so I don't know if it is one that's capable of reporting full data. I believe you said earlier that he breathed through his mouth during the titration study, so he may find that he has a problem with mouth leaks (therapy air escaping from his mouth), so keep an eye out for that, as it could make therapy less effective. He may not even be aware that it's a problem if it mainly happens when he's in deep sleep. We can offer some tips if that occurs. Or he may have to try the full face mask. I know they can be more difficult, but there are many people here that do use them successfully.

I mentioned in an earlier post about condensation forming in the hose. Since it's wintertime, you'll probably find you'll need a hose cover to insulate it from the cooler room air. The condensation is called rainout, and it isn't pleasant when the water goes up your nose!

I hope that David woke up refreshed from his nap! He has a lot of sleep to catch up on! I hope you'll be sleeping more soundly soon too. Please remember that we're always here if needed.

~ DreamOn

[cflame1]

You'd either need to get a copy of Encore Viewer or Encore Pro... and a Mako DT3500 card reader. From what I understand the machine that you have only will show 7 day and monthly average AHI on the LCD screen. To see more information, the card would have to be read, and the detail report given.

The report will list pressures used, AHI, AI, HI and leaks as well as a lot of other information.

That being said, some DME's will read cards when asked, but keep in mind some charge for that as well.

[frtwome]

Hi,
Thank you so much, what a truly special Christmas this is. So much more than I expected.
I know that David has a sleep dept to pay, but I can't help but feel over anxious. But I do have a lot of patience, but I can hardly wait for him to show signs of feeling better. What will be great is when he feels better (not so grouchy) and has a different look in his eyes when looking at me. Instead of that look that says ( go away and leave me alone). David is a wonderful, loving husband. And I feel sure that he will come back to me. Just takes time, like everyone here has said and has dealt with. But so far, he is doing quite well.
Take care,
Judy
HAVE A VERY MERRY CHRISTMAS!!!

Hi Dori,
Guess what, DME was here at noon today very very nice man, He talked with us both, but the best part was that he listened to what David's fears were. He didn't give in to less then what David's doctor required, except for the mask. David told him just how much that he was really against wearing the full face mask. And the DME agreed that the full face is very hard to get use to. He fitted David with a Resmed Mirage Activa. But David & the DME agreed with one another that if this mask does not work good enough to bring the apnea events down quick enough, that David will use the full face.
Right now David is sleeping with the mask & machine on. Dori, I am so use to hearing so mush noise coming from David that I have to know. The first night that your husband used it, was he unusally quiet? I have been in there to check on David every ten minutes, because it's kind of scary not hearing the sounds that I am use to. He went in there to nap at 3:30pm today, and now at 6:08pm his is still sleeping with no interuptions, I don't know what to think of this. If this is real sleep that David is getting right now, he will be thrilled. This is so exciting, but yet a little scary, no knowing for sure.
Thanks,
Judy

Judy, I know how anxious you are to get started and hopefully if the stars are in alignment by now you'll have something set up for tomorrow or the latest Thurs. I think it may be a good idea to stay with the DME for now if just for the mask exchanges if necessary(most have a 30day exchange policy) and any hands-on assistance you might get from them if you're lucky enough to get a knowledgeable RT. Once you actually have the equipment and start asking questions here you'll be on your way. Keep us posted, you're with you.

Judy

This is sounding very very good !!!.

It will be the most wonderful Christmas news if hubby suddenly sees he can have a new life & how to do it !!!.

Merry Christmas + lots of happiness to you both

DSM

[frtwome]

Hi Goose,
Yes...it is fantastic. I will do what you said with the mask to see if it is adjusted correctly, I want to make sure that it is sealed with no leaks, I've got to get more familar with this so that I know for sure that it is working properly. David ended up sleeping 3 hours with his first nap wearing the mask, and 4 hours straight sleeping last night. He still got up at 4:00am, I think that's because he is so use to doing that, he just got himself use to doing that instead of going back to bed and trying to get more sleep. I didn't sleep a whole lot last night because of checking on him, and it will definately take me awhile to get use to the quiet, and making sure that David is ok.
But so far, no complaints with the mask. That is just great.
Thank you very much,
Have a very Merry Christmas!!!

Hey Judy,
Yes!! What he is experiencing is good sleep!!!!!! That's fantastic!!!!! What you shouldn't hear is snoring!!! You'll hear the machine ebb and flow as he breathes, but it should be pretty quiet compared to what you're used to.....

To add some to what DreamOn said. With the Activa LT or the Straight Activa you want to make sure the mask straps are not too tight. That forehead piece has 3 or 4 notches (the LT has a dial) which will move the mask either closer or further from his face. For me I needed it as far away as I could get it, but it depends on how the face is shaped. (if he moves it too far and the piece comes off, it's easy to put back -- in fact it's one of the things you'll dismantle to clean it).
The easiest way to tell if the Activa mask is adjusted ok is that when it is on and inflated, he/you should be able to reach up and that "puffy" loop around the edge should be inflated so that you can squeeze it (that's how I adjust it on my face after inflation so it doesn't leak.....just squeeze the "balloon" and let it re-inflate.). If it's flattened out and not "squeezable" then the mask is too tight and the "Active Cell" is not doing what it needs to do in order to seal......
For me, the greatest thing about the Activa (LT) is that when I turn from side to side it doesn't start leaking. That inflatable part just kind of moves a little bit with me and retains the seal it has....
Will it leak?? Yup!!! Mine leaks sometimes, but so far it's the most comfortable mask I've found, and it leaks the least of any mask I've used!!!!
Size is also important. If it's too large, ask for a smaller interface.....In the LT the smaller interface is counter intuitive and called the "Large-Wide"....I don't remember what it's called in the Activa, but it's the same piece - just named differently!!!

Merry Christmas Judy, to you both. It sounds as though he'll be on his way to better and more restful sleep. Now you just have to get used to it being quiet!!!!
Take care
cheers
goose

[DreamOn]

Hi DreamOn,
Thank you very much.
Now is when I want to learn everything possible with David's therapy. Now that we have the machine, mask & etc. The machine that he has is a Respironincs auto Bipap m-series biflex with smart card, and heated humidifier. DME said the pressure was set at 16. (doctors prescription) It is a used machine, but only has a liitle over one hour use on it. It came with a 6' hose, carry bag. And a new Resmed Mirage Activa mask. The total cost was $900.00
If it has a way to detect leaks, that would be great, so that I know this. And I would love to know how to follow the data myself. DME said that he can keep track of David's progress, over a period of every three months, and will report it to David's doctor and us, because the machine does have the smart card. How can I do this myself?
So far he has been sleeping on his back, and his mouth is closed. He does like to sleep on his side, but right now he is saying that the mask isn't moving correctly with him when he tries to change positions. He hasn't really complained much about the mask, I just wish that I knew for sure that it isn't leaking at all. I will have to go out today to buy the insulation for the hose, so that I can make sure of no condensation. And I was told to use only distilled water in the humidifier. And wash the water container out once a week with a little white vinegar & water. Wash the mask with a mild clear soap & water daily.
So far everything is good, and it is the best Christmas gift ever.
Thank you again,
Merry Christmas to you.
Judy

Yes, what a wonderful Christmas this is for you and your husband....the gift of a new life!!!

I think that David got an excellent machine! You're very lucky to find one with such few hours. I think you got a great price. And it sounds like the DME is giving you good instructions. I have a ResMed machine myself, so I can't really help you with instructions for reading your Respironics machine's LCD screen (to get leak and AHI information), but there are many people here that can assist you with that.

There may be someone on this forum who can send you the Clinician's Manual for that machine. That has all the information you should need. The manual should explain how to access information on the machine's LCD screen. If you have questions after reading that, just ask and I'm sure you'll get lots of help. It sometimes helps to start a new thread when asking a specific question too.

If the Activa mask is the right size for him and it's adjusted correctly, he should be able to move all around without it leaking. Assuming that it is the proper size, it may take a while to figure out just the right strap tension and nose bridge dial adjustments. I think that most people have a tendency to overtighten masks, and that is one that needs to be looser than some.

I agree with cflame1 that to get the most information you will want to get the software and card reader. That can be purchased online. The software shows visually what's happening during the night, with more detail than the machine's LCD offers. Perhaps someone here can post a few screenshots of their software reports so you can see what it looks like. Or you could search this forum for Encore report examples.

It would be helpful if you could fill out your husband's equipment profile, so it will show every time you post. It really helps everyone to see which equipment you have every time. To add the equipment information, click on "User Control Panel" at the top of your computer screen, then "Profile", then "Edit Equipment". Use the "text" option for the equipment profile, as it's much easier to see at a glance than the image option. You may also want to include a note about your husband's pressure settings. That information can be added to the "Edit Signature" option, which you'll see after clicking on "Profile".

Wishing you a joyous holiday, and a very Happy New Year!

~ DreamOn

[DoriC]

Judy, Just a couple of thoughts. I think David did great last night sleeping 4hrs and remember that was after a 3hr nap in the late afternoon. I think for insurance purposes they consider 4hrs or more as nightly compliance, of course his goal will be 7-8hrs which will happen. I don't know about your mask but with the FF after Mike adjusts his I put my hands around the edges to feel for any air leaking and we adjust. Also in most cases apneas occur more frequently in supine position and during his sleep study Mike had most of his events on his back, so it's a good habit to sleep on the side. If this position produces leaks after you've done all the adjusting you might want to get a special cpap pillow, you can do a search here or start a new thread about bed pillows and you'll get lots of replies. I don't want to throw too much at you all at once but even more important because we are the caregivers, having the software and daily reports is essential to seeing what's happening and giving the experts here the tools to help you understand the data and what adjustments to make. I'm glad you got your Xmas present just in time and a happy,healthy New Year to both of you. Dori

[frtwome]

Hi Dori,
Exactly as you described, is what it was like last night, David ended up taking a three hour nap yesterday evening. When he woke up on his own. He came in here and told "You know Judy, this might not be so bad, I actually feel like a got a little bit of sleep, I think that I might like this" And days before when I told David about your husbands remark about his girlfriend, David said "I think that I can understand that, I might just have me a girlfriend too!"
It's hard to explain how happy I was to hear him excited about this. It's incredible. Last night he actually slept for 4 hours straight. And you are right, I too am pretty wore out tonight, but this time it is from being awake most of the night because of the silence, not all the arm & leg moving and gasping for air.
Judy

Hi Judy, good news about the DME and David's willingness, I'm so happy for you even though getting started is a very scary business for spouses watching and waiting and not knowing exactly what they're supposed to be observing or adjusting. I don't know much about masks other than FF but I know the Activa is a popular one here. Hopefully David will not mouth breathe and his mask will suit him,that's the tricky part. When Mike had his titration study the tech told me they started him with an Activa I think, but during the night they had to change him to a FF because his jaw dropped open in REM and the whooshing noise scared him so much he was happy to wear the FF and never questioned it again. I'll also confess that I had many sleepless nights waking and checking to see if he was really OK. He was pretty out of touch with what this therapy was all about. Even though I could hear the machine and see the rise and fall of his chest, I kept waiting for the snores, silences, gasps and restless movements that I was used to which never came. I must admit I kind of wore myself out with lack of sleep until our Dr gave me a stern lecture and truthfully told me that Mike was looking healthier than me and that he wouldn't suffocate, the worst that could happen is he might take his mask off during the night(that's all he knew how to do) which did happen a few times in the beginning. Of course today is an exception for you but I found it's best to try to keep to a normal sleep and nap schedule. Mike naps for about an hour or so in late morning and then he's good until bedtime about 11PM and sleeps until about 8AM. Hope this helps, take a deep breath, Dori