Husband needs help badly

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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Julie
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Re: Husband needs help badly

Post by Julie » Wed Nov 26, 2014 1:29 pm

Hi - I agree that his low pressure setting needs to be raised for more effective therapy.

I agree with Palerider that Pugsy's notes go into detail that mine do not .

I have a Mac and if you need help, please PM me (or just write here).

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Pugsy
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Re: Husband needs help badly

Post by Pugsy » Wed Nov 26, 2014 1:35 pm

scarlett6 wrote:Remstar Pro DOM 460P
REF460P
The correct choice from the equipment menu would be this.

PR System One 60 Series Pro CPAP
That choice is right below the PR System One 60 Series Plus CPAP you have showing right now.

The Plus and Pro wording is critical.

For humidifier this would be the correct choice even if not using the heated hose at this time.

PR System One 60 Series heated tube humidifier with heated tube.
It must be this one because the other System One humidifier won't work with the 60 series machine.

Both of those are working and active links at this time.

The PR System One machine doesn't record oxygen levels at all. The only thing that is on the SD card in the machine will pertain to his sleep apnea therapy. Something else is needed to evaluate oxygen levels.
Start with what you have on hand at the moment and that is the SD card in the PR S1 machine.
His prior issues with the nasal symptoms...sneezing and/or congestion...were probably related to the humidifier setting. He may have needed more or less humidity (it varies among individuals as to what makes the nasal mucosa happy) and the reduction in pressure wouldn't be the normal thing to adjust for those symptoms..humidity level delivered would/should have been the thing to change...either more or less depending on what he was using at the time.
Reducing the pressure by over half probably is causing sub optimal sleep apnea therapy meaning allowing too many apnea events to happen and along with those the usual typical OSA symptoms.
Now maybe there was room to reduce the pressure and not sabotage the therapy too much but we don't know what is going on in terms of therapy until we see the software results.

I have no experience with a Mac so I will leave those details to those that do.

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palerider
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Re: Husband needs help badly

Post by palerider » Wed Nov 26, 2014 1:49 pm

scarlett6 wrote:Still cannot get equipment to register properly in Profile.
I again called the manufacturer.

REF460P
pick the line that says exactly this: PR System One REMStar 60 Series Pro CPAP Machine

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archangle
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Re: Husband needs help badly

Post by archangle » Wed Nov 26, 2014 6:31 pm

scarlett6 wrote:Trouble trying to post in profile...

Remstar Pro C-Flex+
System One Heated Humidifier
Nasal Mask is F&P Eson CE0123
Software (called manufacturer, they say it should be: Encore Anywhere. This is not on the drop down list, so it won't let me post in profile.)
S/N P08937148 7CCF

I think I also failed to post his sudden onset of hypertension when pneumonia developed..

scarlett6
You're in luck. The Pro model is an excellent manual CPAP machine. It records the information needed to figure out whether his CPAP is working correctly.

I'll warn you that many doctors are too lazy, arrogant, or greedy to check the data the the machine records and may want to do new $leep te$t$.

You can read his AHI numbers off of the screen and that will give you info about how his therapy is working now. You can also use the free SleepyHead program to look at the data in the same level of detail that a good doctor would use. It's not quite as good as a real in-lab $leep te$t, but it's darn good and it's recorded every night.

Many of us find we have to take a much more active role in our own therapy. We know how to read the data and change the pressure.

BTW, you do need to change the entry from "Plus" to Pro" in your profile.

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Janknitz
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Re: Husband needs help badly

Post by Janknitz » Wed Nov 26, 2014 7:30 pm

For starters, if you're not up to using Sleepyhead, we can guide you to read the very limited data the machine will show you without software. I'm not at home where I can look at my machine, but perhaps someone will chime in with how she can check the AHI if the data isn't locked and how she can check it if it is.

The AHI is the apnea hypoxia index and it will give us some idea if he is getting adequate pressure to treat his apneas. It should be under 5, ideally under 2. There's also "large leak" data which ideally should be 0. All that you will see on the machine screen is 7 and 30 day averages, but that will tell us a lot.

The other question is how often does he replace the mask and headgear? Over time they wear out and begin to leak, and if he isn't replacing it when needed he may be getting inadequate therapy regardless of the settings.

If the reduction in pressure was done surrendipitously--that is without data and without follow-up, then I'm feeling really angry on your behalf. That doctor made a casual change that perhaps cost your husband some brain cells and heart damage. Grrr!
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Sleeprider
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Re: Husband needs help badly

Post by Sleeprider » Wed Nov 26, 2014 8:00 pm

Machine data would be useful to review for clues to recent problems. May I also suggest he ask his doctor to do a more complete physical workup including testosterone and hormone levels. I'm reading between the lines here, but I think it would be a good idea to involve your physician in an overall evaluation, and referral to a specialist to get a look at the sleep data.

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scarlett6
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Re: Husband needs help badly

Post by scarlett6 » Wed Nov 26, 2014 8:49 pm

I am still unable to update my profile, despite changing the things you all have suggested. I don't know what the hangup is.

scarlett6

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archangle
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Re: Husband needs help badly

Post by archangle » Wed Nov 26, 2014 10:08 pm

scarlett6 wrote:I am still unable to update my profile, despite changing the things you all have suggested. I don't know what the hangup is.

scarlett6
It looks pretty good now.

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DreamDiver
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Re: Husband needs help badly

Post by DreamDiver » Wed Nov 26, 2014 10:54 pm

scarlett6 wrote:I am still unable to update my profile, despite changing the things you all have suggested. I don't know what the hangup is.

scarlett6
scarlett6, I might have missed it, but if nobody has suggested it, you might want to consider investing in an inexpensive oximeter. I understand you don't have a windows machine. If you can get access to one (local library? university?), it might be worth the effort. It's a lot to learn, but there are a lot of helpful, smart people here who can steer you in useful directions that may help to get your husband back his pep. The data from the oximeter can be linked with the data from your CPAP machine in Sleepyhead. (Once you have exported the data.)

This one oximeter very popular:
http://www.semedicalsupply.com/CMS50D-P ... 0dplus.htm

For less than half the price, same machine:
http://www.aliexpress.com/item/50D-plus ... 07165.html (I bought this one. This particular Aliexpress seller is reputable.)

There are other fancier machines that offer readout of recorded data right on the device itself.
http://www.aliexpress.com/item/60F-Hand ... 46359.html

It may be too much for now. If so, just put this suggestion on the shelf for future reference.

Best of luck,

Chris

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scarlett6
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Re: Husband needs help badly

Post by scarlett6 » Thu Nov 27, 2014 2:09 pm

I will order the oximeter, but right now I have a house full of Thanksgiving company making it difficult to work through much of this. My husband seems to be perked up a bit today, but I am still very concerned and will next try to wade through more of these suggestions and try to understand them.

Thank you,
scarlett6

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scarlett6
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Re: Husband needs help badly

Post by scarlett6 » Tue Dec 02, 2014 1:21 am

Here is at least part of the information you all asked me to post. Please bear with me here. My own health is really rough or I would have attended the appointment with him. I am doing my best to get this information together and posted.

I think I recall him telling me that the original sleep study place was no longer there. By the way, he never saw a physician in the initial place, despite multiple complaints about dryness and noise.


Husband went to appointment today 12-1 and saw technician who indicated settings were OK.

I don't see a copy of a prescription in the papers he brought home, but I do have Diagnostic Results Split Night Study and Interpretation, Recommendations.

Reason for study: History of sleep apnea with CPAP intolerance at 13 CWP and full face mask.

Diagnosis: Obstructive sleep apnea/hypoxia and upper airway resistance. Moderate to severe with an overall apnea/hypoxia index of 28 events per hour, increasing in REM to 79 events per hour; breathing related arousal index 28 per hour, minimum oxygen saturation in sleep 82%.

Control of obstructive apnea/hyponea, upper airway resistance and snoring with nasal CPAP set at 8 CWP.

Periodic limb movements of sleep, typically non-arousing. (not specifically addressed but to be followed)

Recommendations: Nasal CPAP represents the most consistently effective therapy for sleep disordered breathing. (The record indicated that alternatives were discussed in context of likely success rates, but I do not know what those were.)

It also says that the patient has received a renewed (???) prescription for nasal CPAP of 8 CWP with a nasal gel mask (Zest) interface and also recommends weight reduction, not driving when sleepy and avoiding alcohol before sleep

There are several pages of diagnostic results describing numerous detailed parts of the study. I can try and provide details of those, if needed.

I hope this gives you all some of the information you need and tomorrow I will go back and review what else you suggested posting or doing.

Thank you,
scarlett6

.

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scarlett6
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Re: Husband needs help badly

Post by scarlett6 » Tue Dec 02, 2014 1:30 am

You know, considering some of the symptoms he is exhibiting, my first thought would be maybe he needs to be on O2.

scarlett6

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kaiasgram
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Re: Husband needs help badly

Post by kaiasgram » Tue Dec 02, 2014 1:51 am

scarlett6 wrote:You know, considering some of the symptoms he is exhibiting, my first thought would be maybe he needs to be on O2.
Maybe, but it could just be that the current (lower) settings are not adequate. Around here we've learned to question when a tech (or in some cases a doctor) says "The settings are OK" or "You're doing fine" because the comment may not be based on really examining the data from the machine. Sometimes the docs/techs/resp therapists only glance at the data to see if the patient has been using the machine.

Fortunately your machine has treatment data. One way to check hubby's AHI would be to look at the data on the machine's display panel. There's a brief tutorial at the link in my signature box. The last video on the PR machine (about 7 minutes long) should show you how to access the menus and see what his AHI is. If you can get the breakdown of that AHI (AI, H, CA) that would be even more helpful.

I'm still wondering if the big decrease in pressure is the problem, or part of the problem. He might need O2, but we don't know yet if it's because his machine is letting too many apneas slip through, or if he actually needs supplemental oxygen.

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scarlett6
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Re: Husband needs help badly

Post by scarlett6 » Tue Dec 02, 2014 2:29 am

OK, will try to determine the tutorial you are referring to and look at his machine in the morning. It is 2:30 am here.

Some of the symptoms are really worrisome. I think I pretty well covered those n my initial post.

Thank you,

scarlett6

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kaiasgram
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Re: Husband needs help badly

Post by kaiasgram » Tue Dec 02, 2014 2:52 am

Yes you described the symptoms clearly and they are worrisome symptoms. They do sound like sleep apnea symptoms and based on your description they coincide with the lowering of the pressure, which is why I'm still wondering whether that big decrease in the pressure setting has compromised the effectiveness of his treatment.

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