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Please, we need your advice!
#11
RE: Please, we need your advice!
The only thing with an alarm to go off would be an oximeter. She would wear it as she sleeps and an alarm would go off when the blood oxygen level goes below a certain percent.

But, really, a month of trying it? That's all? And she would rather have an expensive, invasive, painful surgery instead? Is she aware the vast majority of patients who have these "sleep apnea" surgeries still have to use CPAP anyway?

When it comes down to it, Josh, only she can do it for herself. You can surround her with alarms but, really, she has to be an active participant. If you want to protect her as you say, then get her back on CPAP. Convince her that you want her to be around for a long time, not slowly dying of system failure or, at the least, heart failure.
PaulaO

Take a deep breath and count to zen.




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#12
RE: Please, we need your advice!
Hi Joshua Miller,
WELCOME! to the forum.!
I encourage your wife to try again with CPAP therapy and you can keep us posted as to how her treatment is going,so she can get the help she needs.
I wish you both good luck, hang in there for more responses to your post.
trish6hundred
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#13
RE: Please, we need your advice!
Hi eseedhouse,

I understand your point of view.

The insurer sent us the machine (completely new) and they asked us to use the CPAP according to the instructions in the attached manual. That was all the support they gave us. The first time was more than a year ago. She has made several attempts to reuse CPAP but she always suspends it in two or three hours because she can't sleep with it.

As for using a different machine, that is unlikely because the insurer doesn't own differents machins. We can't consider the option of buying a machine because of the high cost.

Anyway, (apologize for insisting) we need a monitor as well to determine if CPAP is doing its job or not, so we insist on asking which monitor can be useful for this purpose and that has a good alarm.

Thanks.
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#14
RE: Please, we need your advice!
Thanks Chill.
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#15
RE: Please, we need your advice!
(02-26-2017, 12:21 AM)Joshua Miller Wrote: Hi eseedhouse,

I understand your point of view.

The insurer sent us the machine (completely new) and they asked us to use the CPAP according to the instructions in the attached manual. That was all the support they gave us. The first time was more than a year ago. She has made several attempts to reuse CPAP but she always suspends it in two or three hours because she can't sleep with it.

As for using a different machine, that is unlikely because the insurer doesn't own differents machins. We can't consider the option of buying a machine because of the high cost.

Anyway, (apologize for insisting) we need a monitor as well to determine if CPAP is doing its job or not, so we insist on asking which monitor can be useful for this purpose and that has a good alarm.

Thanks.

A data capable CPAP will tell you if CPAP is effective, and we can, will and do help with that.  We look at data from the machine Identify issues, and discuss treatment tweaks.    How much we do is really up to you.
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#16
RE: Please, we need your advice!
Joshua, I was in exactly the same position as your wife and the first few months were a disaster as far as CPAP was concerned. Then I discovered this forum and within 6-8 weeks my therapy was working well for me. Initially I hated the whole process, now I'm in horror of it not being available. It's my godsend. Let these very knowledgeable folks work their magic for your wife.
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#17
RE: Please, we need your advice!
(02-26-2017, 12:21 AM)Joshua Miller Wrote: The insurer sent us the machine (completely new) and they asked us to use the CPAP according to the instructions in the attached manual. That was all the support they gave us.

I am horrified to hear this - your wife has been treated with callous incompetence. Moreover, she has been set up to fail. CPAP therapy requires careful tuning and optimisation, under the care of somebody who knows what they are doing and are invested with a desire for the best possible outcome. You obviously have that desire, and the people on this forum know what they are doing. With a little bit of practice and persistence, you and your wife will also know exactly what you're doing.

Quote: She has made several attempts to reuse CPAP but she always suspends it in two or three hours because she can't sleep with it.

I'm not surprised, given the poor service which has been given. A littlebit of time spent on the proper setup and monitoring will make all the difference.

Quote:As for using a different machine, that is unlikely because the insurer doesn't own differents machins. We can't consider the option of buying a machine because of the high cost.

I don't know your insurer, but I doubt if they own any machines at all - this is outsourced to a durable medical equipment dealer (DME) who will most definitely have more than one type of machine available.

Quote:Anyway, (apologize for insisting) we need a monitor as well to determine if CPAP is doing its job or not, so we insist on asking which monitor can be useful for this purpose and that has a good alarm.

Please do not apologise - there is no need to apologise for trying to do the best possible for your wife and family. There is a ventilator made by Resmed which includes an alarm - the Aircurve ST-A. http://www.resmed.com/us/en/healthcare-p...0-sta.html However, this is designed for people with neuromuscular disease and other conditions which prevent them breathing. It's not a treatment for sleep apnea.

There are also "baby monitors" which monitor the breathing of an infant who may be susceptible to sudden infant death syndrome. I doubt if they would be suitable for an adult, and I'm not aware of anything similar being provided for adults.

As mentioned in a previous post, some oximeters do have alarms. This may be the best solution for your situation.

Quote:While they deciding what treatment to follow, probably with a surgery, she need a monitor that detects this episodes of apnea and trigger an strong alarm, enough to wake it as we both have a very heavy sleep. I'm aware of the dangers posed by an apnea or several apneas at night ...

>Disclaimer - I'm an engineer, not medical professional, so take my advice for what it's worth< Unless she has a very unusual type of apnea, there is little or no immediate danger. Apnea is a chronic disease, in which repeated arousals caused by the lack of breathing causes a cumulative problem over time. People don't just die of a single apnea event - it's something which builds up over time. May I ask who has suggested the use of an alarm? Because I think it's not a good idea, unless her apnea is of a very unusual type. If she has common or garden variety obstructive sleep apnea, the use of an alarm could be counter-productive, causing the release of higher quantities of adrenaline which can cause issues such as heart arrhythmia.

From my personal experience, I was diagnosed with very severe apnea (AHI >60). I use my machine every night, but on occasion it's not possible for various reasons. I know I'll feel like crap the next day, but I have no fear whatsoever that those 60 apneas an hours will kill me overnight. While I have the greatest respect for what you're trying to achieve, unless you're acting on real medical advice, I think you may be worrying unnecessarily.
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#18
RE: Please, we need your advice!
Hi to all:

Thanks Paula02, trish6hundred, bonjour, holden4th and DeepBreathing for your posts,
We have read all and each one very carefully.

Ok... I was analyzing with my wife everything that you have written to us in this thread and well, she agrees that we make a new attempt, this time with the help that you can give us. In truth, we are very grateful for the interest you have shown in our case.

When she uses the machine, she configures it like this:
Humidity level: 3.5
Ramp time: 4.0min

She is using a ResMed machine with an H5i humidifier and a unit S9 with SD Card. Both devices are joined together with a kind of rail.

S9 main technical specifications:

Operating pressure range: 4 to 20 cm H2O
Maximum single fault steady state pressure: 30cm H2O
Pressure measurement tolerance: +/- 0.5cm H2O +/- 4% of the measured reading
Flow measurement tolerance: +/- 6 L / min or 10% of reading, whichever is greater.
Standard air filter: Polyester fiber
Air Outlet: The 22mm conical air outlet compiles with ISO 5356-1


H5i main technical specifications:

Maximum heater plate temperature: 150 ° F (65 ° C)
Temperature cut-out: 165 ° F (74 ° C)
Maximum gas temperature: <= 106 ° F (<= 41 ° C)
Water capacity: 380ml Max.

What changes should we make?

Thanks.
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#19
RE: Please, we need your advice!
By the on/off button, what does it say? Sounds like it will say Autoset.

Is there an SD card in the back?

If there is an SD card in the back, download the SleepyHead software (link at top of page) and use it to view the data on the card. This will tell the two of you how she did the last time she used it. Some of the information will be gone but enough will be there to give an idea of where to start.
PaulaO

Take a deep breath and count to zen.




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#20
RE: Please, we need your advice!
Hi Joshua

Thanks for providing this information. The S9 is a superseded machine but still very effective (I use one myself). However there are a number of different models of S9 and it's essential we know which one you have. The model name will be printed adjacent to the power button, and will include words like Escape, Elite, AutoSet or VPAP. Please tell us exactly what's printed there. A word of caution - the Escape is a very inferior machine which will not give adequate data. If you have one of these, you need to approach your insurer about getting a fully data-capable machine.

Before we can work out what changes to make, we need to know the current settings. The ramp and humidity are basically "comfort" features which (as the name implies) can be adjusted to make your treatment more comfortable. They don't directly affect your treatment. It's mainly the pressure settings we need to know. Depending on your machine it might be a single set pressure or a range (minimum to maximum). This should have been prescribed by your doctor following the sleep study. If you don't have a copy of the sleep study report and the prescription you should try to get hold of them.

You should also get hold of the clinician manual for your machine and some software to help monitor progress. Once you know exactly which machine you have, go to this link http://www.apneaboard.com/adjust-cpap-pr...tup-manual and request the manual. Please read the instructions carefully as there are very many manuals available. Note that the clinician manual is different from the user manual which is supplied to patients.

The software I recommend is called #SleepyHead and is available by clicking here http://www.sleepfiles.com/SH2/ Download and install it, then import the contents of your SD card. The amount of data available is overwhelming, but we can help walk you through it.

Lastly, can you tell us what type of mask your wife uses - the mask is often the key factor in being able to tolerate CPAP therapy.

I know we're asking for a lot of information here, but it really is necessary to give us a full understanding of your setup so we can make recommendations to help improve your situation. Please give your wife our best wishes.
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