my husbands diagnosis of OSA

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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Holli
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my husbands diagnosis of OSA

Post by Holli » Fri Apr 24, 2015 9:14 pm

hello from the USA, my name is hollI and after sharing a wonderful 10 years together my new husband and myself got married last month. he is considered obese but to date has not had any interest at all in losing weight. the week before last was when I reached my breaking point. He has always snored and I have suspected sleep apnea but did not know what it looked like. well his snoring got worse a lot worse after we got married and then last week I was laying on on the couch and he was asleep and I felt him stop breathing. I thought my heart froze as if time stood still I even held my breath just waiting for him to breathe again unsure what to think. after what seemed an eternity I felt his chest rise and fall. And I decided then that my nagging him to get tested was going to stop. I told him I was flexing my new bride muscle and making him go to the doc to sign up for an in home study. That study was this past Monday and Tuesday nights and revealed moderate obstructive sleep apnea. He got his machine last night but while I was asleep he felt the pressure was way off and out of frustration he took it off. I woke up to his snoring and then heard his bteathing stop as I'd heard many times before. I woke him up and said I cannot just lie here frightened that he won't be here when I awake paralyzed with fear. And that giving up was not an option and that he should have woken me up thats what I'm here for to help any way I can. I'm hoping of course he gets relief soon but In the meantime I'm going through these powerful waves of emotion...fear...worry...I'm northeast to lose him we went through so much to wear these rings. I read an article that said sudden death by cardiac arrest or stroke goes to 80 percent with more than 78 percent o2 and over 15 events a night...he had 77 percent in the sleep study. I'm petrified and a mess such a mess. My question is how do you cope when your spouse have it? I try to be strong and may be I'll get better over time because this is just the first week...oh I don't know. I want to be strong for him but inside I'm crumbling.

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kaiasgram
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Re: my husbands diagnosis of OSA

Post by kaiasgram » Fri Apr 24, 2015 9:31 pm

Holli, welcome to the forum. Is your husband willing to log on here and let us help him troubleshoot his therapy issues? If not (or not yet) there are some things you can do. First thing is to let us know the make and model of his machine. We can then tell you if you can use some great software to see what's happening when he's using the machine.

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Papit
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Re: my husbands diagnosis of OSA

Post by Papit » Fri Apr 24, 2015 9:45 pm

Hi Holli. See if you can get him to log on here and fill in his equipment and other info. Folks just starting out on cpap have been well-advised to wear their equipment earlier in the day watching tv or reading to help get used to what it feels like, especially the pressure. It might also be useful for him to get up earlier or retire later so he'll be a little extra tired to help initiate sleep and stay asleep. I don't suppose a glass of wine with dinner would hurt either (although some teatotalers might be on my back about that) and it might help relax him. You and he are in the right place. Best of luck in getting past this early "initiation" phase of the treatment.

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robysue
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Re: my husbands diagnosis of OSA

Post by robysue » Fri Apr 24, 2015 9:47 pm

Holli,

Welcome to the forum.

Most (but not all) of the people here are the spouse with the OSA. We do have a few spouses and significant others of OSA patients.

You write:
Holli wrote:He got his machine last night but while I was asleep he felt the pressure was way off and out of frustration he took it off. I woke up to his snoring and then heard his bteathing stop as I'd heard many times before. I woke him up and said I cannot just lie here frightened that he won't be here when I awake paralyzed with fear. And that giving up was not an option and that he should have woken me up thats what I'm here for to help any way I can.
Somethings you need to understand: Learning to sleep with a CPAP is NOT easy for some of us. And it's sometimes hard for the CPAP newbie to believe that the spouse has any idea of what they're actually being asked to do. (I know that I was convinced that my hubby had NO idea what I was going through each and every night for the first six months of my very long and difficult adjustment period.)

Chances are, when your new hubby woke up and took the mask off in frustration, the idea of waking you up to somehow "help him" deal with the CPAP stuff more than likely didn't even occur to him. And it's pretty common place for newbies to take the mask off, often because the air pressure can seem overwhelming at the beginning.

When you woke up and noticed the mask was not on his nose, you did the right thing in waking hubby up and telling him to put it back on. But fussing at him because you think he should have woken you up is counterproductive.

Since you want to help hubby adjust, here's are some ideas for you to think about and maybe try:

1) Talk to hubby about the CPAP stuff and your desire to help far away from bedtime. Understand that bedtime for hubby may be filled with a certain amount of dread right now. Ask your hubby to describe what the CPAP feels like to him. And don't interrupt him if he starts ranting about how impossible the whole thing feels right now. If you really want to get a taste of what hubby is dealing with, offer to put his mask on and have him turn the machine on so that you can actually feel what he's going through.

2) Ask hubby if he'd like your help in dealing with talking to the doc and/or the DME when he hits snags. That will require him signing the appropriate HIPAA paperwork, but if you deal with doctor types better than he does, it may make a big difference in the long run.

3) When you wake up in the middle of the night and hubby has taken the mask off, wake him up and tell him that he has to mask back up.

4) If hubby starts to complain about the pressure being too much OR if hubby is complaining that he feels suffocated when he has the mask on, he should report the problem to the sleep doc's office. If he won't report his problems to the sleep doc's office and he seems to be in real distress or in danger of just giving up on PAP, then you should report the problem to the sleep doc. They may not do anything about it or have any suggestions on how to handle it, but you need to make it clear to them that hubby is having trouble.

5) Find out exactly what kind of machine hubby has as in both the make and the model. Also find out exactly what make and model of mask he is using. Encourage hubby to know these things as well. If neither of you know the pressure settings, somebody (preferably hubby) needs to know what his script says.

6) Encourage hubby to join cpaptalk.com himself. If he starts complaining about anything CPAP related, be sure to tell him that we're a community of CPAPers who have made the long difficult adjustment to this new way of sleeping. And no matter how oddball his particular problems with adjustment might be, somebody on this board has successfully dealt with them.

I'm hoping of course he gets relief soon
Most new CPAPers do NOT feel better right away. It takes most new CPAPers several weeks to a few months to learn how to sleep well with the equipment. And until you're sleeping well with the mask, the way you feel in the daytime doesn't really improve. However, once you are sleeping well with the mask, most newbies start to feel better in a few weeks to a couple of months. And sleeping well with the mask means you're using the mask all night long, every night AND you're not waking up multiple times needing to fiddle with mask leaks or other CPAP-related problems.

The real trick to becoming a long term CPAPer is persistence: In other words, it's important to NOT give up when the very common adjustment problems start to happen.
but In the meantime I'm going through these powerful waves of emotion...fear...worry...I'm northeast to lose him we went through so much to wear these rings. I read an article that said sudden death by cardiac arrest or stroke goes to 80 percent with more than 78 percent o2 and over 15 events a night...he had 77 percent in the sleep study. I'm petrified and a mess such a mess. My question is how do you cope when your spouse have it? I try to be strong and may be I'll get better over time because this is just the first week...oh I don't know. I want to be strong for him but inside I'm crumbling.
My own advice to you is to simply take some deep breaths and calm down. Seriously.

Most newly diagnosed OSA patients have had their OSA for years without dying. And if a patient becomes fully compliant with CPAP therapy their risks for long term health problems related to untreated OSA go down dramatically---as in become essentially the same for someone with their other health problems.

But fully compliant means you use the PAP all night long, every night. And the CPAP pressure is high enough to be effective in treating the OSA. And the leaks are under control. And you need a full efficacy data machine to make sure of those things.

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Julie
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Re: my husbands diagnosis of OSA

Post by Julie » Fri Apr 24, 2015 9:47 pm

And important also to know is what pressure(s) his machine's set to... too often they're not done properly and we have to tweak them ourselves, which may be why he felt he couldn't breathe properly.

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Nick Danger
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Re: my husbands diagnosis of OSA

Post by Nick Danger » Fri Apr 24, 2015 10:01 pm

Sue is right on target. One other thing to note - he's probably had sleep apnea since at least the first time you heard him snoring (likely 10 years ago). Sleep apnea IS dangerous and it can lead to early heart attack or stroke, but that is unlikely to happen tomorrow (but it might - and it can be scary for the spouse). It usually isn't a quick killer (but it can be...). Freaking out every time you notice him having an event isn't good for you and it isn't good for him. I know it is hard to relax when you are worried about the person you love, but that is the best thing you can do. Try to be gentle, but firm. I suspect that the primary reason he is even trying this is because he loves you. I'm not sure he has bought into the health problems this can cause. As Sue said, many of us had a really difficult time getting used to CPAP.

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Re: my husbands diagnosis of OSA

Post by yaconsult » Fri Apr 24, 2015 10:40 pm

We can help! Try to get him to come here with you. The collective wisdom and experience here is amazing! There are many things that can be done to make his cpap therapy work better and be more comfortable. I would say that MOST people have trouble at the very beginning - it's expected. But there are many solutions and ways to work around problems as they arise.

The mask is the MOST important part and there are three different major types that most people use: nasal, full face, and nasal pillow. For example, I use the Breeze nasal pillow system and the only points of contact are a pad at the back of my head, a pad on the top of my head, and the nasal pillows that rest against the bottom of my nose. That's it. It's very comfortable for me and not confining at all.

You can get an idea of some of the different masks and how they work at ours sponsor's website: https://www.cpap.com/cpap-masks-all.php?sort=rating. Many times, new cpap patients are allowed to try different types and brands of masks when they first get their equipment, so contact your DME/equipment provider and ask. There is not one best mask - we are all different and what works for one is horrible for another.

But you are right, it's very dangerous to go untreated. I lost a dear friend to a stroke after he stopped using his cpap therapy for his very severe apnea. Try to get your husband to watch this youtube video with you so that he knows what you are seeing and hearing: https://www.youtube.com/watch?v=9bFTcmREtqQ. It might help him to understand what you are going through.

Best of luck to you and I hope we get to meet your husband soon! It really, really helps to have a place like this where you can go to for advice and support.

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Holli
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Re: my husbands diagnosis of OSA

Post by Holli » Fri Apr 24, 2015 10:56 pm

Thank you everyone so so much. It really helps to be understood and to be given some wisdom from his likely pov. I'm not tired so i offered to sit with him since he is used to me being with him at bedtime. I can get the make and model of his mask later I imagine it's on it. He has a resmart auto cpap with heated humidifier. His respiratory tech helped him change the clinician settings earlier tonight over the phone so I don't have those atm. I do know he felt a 6 was too high so he is on a 4.5 initial setting. He has been sleeping for about 30 minutes and just woke up to turn to his side. I'm not sure if he is ready to jump in here but I plan to ask him. I do know that his apap records data and that he mentioned to me in his surfing the net today about adjusting he came across mention of software. If we can figure out how to do that I can post it from tonight.

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Holli
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Re: my husbands diagnosis of OSA

Post by Holli » Fri Apr 24, 2015 10:59 pm

The LCD says its at Auto 7.3 cmH right now.

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Holli
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Re: my husbands diagnosis of OSA

Post by Holli » Fri Apr 24, 2015 11:02 pm

And his mask is a full face mask. I'll get the info for it when I can.

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Re: my husbands diagnosis of OSA

Post by yaconsult » Fri Apr 24, 2015 11:07 pm

It would be helpful if you knew what pressure he was prescribed after his sleep study. You might have access to it online or you may have to request a copy of the sleep study.

It sounds like the machine is in auto mode so it will try to adjust the pressure as necessary throughout the night. Once you have the software installed, you'll be able to post the charts from the software and we can see how the machine is adjusting throughout the night.

See pugsy's wonderful post here: viewtopic/t88983/Pugsys-PointersSleepyH ... Hints.html and jules' post here: viewtopic/t35702/Where-A-CPAP-Newbie-Should-Start.html

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kaiasgram
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Re: my husbands diagnosis of OSA

Post by kaiasgram » Fri Apr 24, 2015 11:10 pm

Not sure if SleepyHead works with the Resmart machine.

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Holli
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Re: my husbands diagnosis of OSA

Post by Holli » Fri Apr 24, 2015 11:23 pm

His sleep study was emailed to him so I can get that. I do not believe he was given a pressure rx just bc a night cpap study was never done I think thats a titrating study? Sorry if I butchered that word lol. He was given a resmed apnealink air in home sleep study device that we operated ourselves without a tech here. Of course I will double check the rx to confirm whether or not pressure is mentioned. I thought it was odd that the apap was brought to us and not tested while my husband was asleep to get that setting. But being a newbie I did not question the tech when he said it would automatically adjust to his pressure needs. And I should have apparently. This really is a learning process.

He is still sleeping peacefully...readings have been 6.5 then 6.9. He hasn't woken up once to say anything was bothering him so far. So apparently tonight's new settings are better than last night to this point.

Thank you for those links I really appreciate them. I will definitely read them and show them to my better half in the a.m.

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Re: my husbands diagnosis of OSA

Post by palerider » Fri Apr 24, 2015 11:39 pm

Holli wrote: He has a resmart auto cpap
resMART, or resMED?

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Re: my husbands diagnosis of OSA

Post by yaconsult » Fri Apr 24, 2015 11:41 pm

Tomorrow, during the day, please remove the water tank from the cpap machine as if you were going to fill it. While the water tank is out, turn the machine over and look at the label on the bottom of the blower unit - the part with the display and/or power button.

What we are looking for is the model number. For example, on my machine it says 550P. It won't be one of the long numbers - those are serial numbers. Here's an example from an older machine: Image
That's a Respironics 200M. If you're not sure which number it is, you can just write them all down and we'll figure it out.

The other thing to note is exactly what the model name is on the top of the unit. We're just hoping that you have a data-capable machine that records all the details of treatment.

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