Will we ever adjust?

First... let's see what 14 does.
Second...you could go back to the supplier and see if they would sell you a full time auto or make a swap or something. All the advice I have been giving you is based on US insurance, DME, Doctor stuff. Doesn't really pertain to where you are. Whole other different animal where you are at.
Third...Cross that "other machine" buying only if we just have to cross that bridge. I have a couple of ideas but let's wait and see if we need to go down that road or not.

Tahera11979 wrote:No we are not in the US. We live in the UAE so that's likely that the software is different. I suppose the reason is to make more money by having people go back and forth.

We are originally from the U.K. so might go and see a doctor there over the summer as so far we haven't found a good specialist yet. Deep inside I wish that the 14 will work of course.

I had been wondering if you were outside of the US due to the timings of your first daily posts, but then knowing you're not sleeping and desperate for guidance I half assumed you were posting in the middle of the night

Tahera, this is what I think I would do in your situation, but I have to first make a couple of assumptions, and based on my own experience and benefit of hindsight.

1. I'm assuming that you're afraid of upsetting your medical professionals by taking some or all control of your husband's therapy.

2. I'm assuming that money is not a major issue for you when it comes to serious health issues - you'd find or borrow money if you didn't have it to hand.

Assuming my assumptions are correctly assumed
I would talk to my medical professional and ask if they can supply me with a better machine - APAP with full data compatibility. If the answer is No, I'd ask if I can buy a machine privately but still be supported by them.
If the answer was still no, I would buy the best machine I could afford without telling them, keep their machine as a backup, and know that they'll be there if you need their help.

This is what I have done in the UK, my Hospital had no problem with me buying my own machine but they will not change anything for me (don't need them to). They are still happy to supply me with masks and filters, and I can call them any time for advice. They will still have an annual review with me to see how I'm progressing, to be honest they're only interested in compliance - I want more than that, I think as patients we all want more than that.

Of course it's your choice, but they don't care about your husband's health any where near as much as you do.

Tahera11979 wrote:I don't know what happened or why 8 cm seemed okay during the titration and not now

Maybe this sounds like a crazy question, but is it possible you are hearing vibrations from leaks under the mask instead of snoring? (Around here these vibrations are sometimes called "mask farts".)

Pugsy wrote: Why you don't have the same menu choices as we do here and expect the machine to have.

Pugsy, I have the Dreamstation AutoPAP, which, according to the Provider Manual, would also have the Auto-trial. But I have checked my machine, and A-trial is not part of the Therapy menu. The Manual I received from the apneaboard link gives 2015 as its year of printing. Is it possible the machines, and therefore the Manual, have been updated since then?

Jean
on the left coast of North America

Soothest Sleep wrote:Is it possible the machines, and therefore the Manual, have been updated since then?

If it's an AutoPAP, there's no need for A-Trial - as it can operate as full-time Auto. I just checked my 3-4 month old machine, and there's no A-Trial on it either (though there is a C-Check mode)

Pugsy wrote:First... let's see what 14 does.
Second...you could go back to the supplier and see if they would sell you a full time auto or make a swap or something. All the advice I have been giving you is based on US insurance, DME, Doctor stuff. Doesn't really pertain to where you are. Whole other different animal where you are at.
Third...Cross that "other machine" buying only if we just have to cross that bridge. I have a couple of ideas but let's wait and see if we need to go down that road or not.

Hi Pugsy, I am on it. I have called everyone involved, including the dealer this morning and now waiting for them to revert to us. Will keep you posted for sure.
Guess what?!? I have been told that regardless of how much we change the pressure at home it won't make the respective change as it is apparently protected and only the provider can do that. Is this even possible? I will wait till they revert to also get the APAP mode as apparently they are in control of the software that is on the machine. We have been told to take the reports and also see a different doctor for a second opinion. I really hope this nightmare of back and forth will end soon.

Hannibal 2 wrote:

Tahera11979 wrote:No we are not in the US. We live in the UAE so that's likely that the software is different. I suppose the reason is to make more money by having people go back and forth.

We are originally from the U.K. so might go and see a doctor there over the summer as so far we haven't found a good specialist yet. Deep inside I wish that the 14 will work of course.

I had been wondering if you were outside of the US due to the timings of your first daily posts, but then knowing you're not sleeping and desperate for guidance I half assumed you were posting in the middle of the night

Tahera, this is what I think I would do in your situation, but I have to first make a couple of assumptions, and based on my own experience and benefit of hindsight.

1. I'm assuming that you're afraid of upsetting your medical professionals by taking some or all control of your husband's therapy.

2. I'm assuming that money is not a major issue for you when it comes to serious health issues - you'd find or borrow money if you didn't have it to hand.

Assuming my assumptions are correctly assumed
I would talk to my medical professional and ask if they can supply me with a better machine - APAP with full data compatibility. If the answer is No, I'd ask if I can buy a machine privately but still be supported by them.
If the answer was still no, I would buy the best machine I could afford without telling them, keep their machine as a backup, and know that they'll be there if you need their help.

This is what I have done in the UK, my Hospital had no problem with me buying my own machine but they will not change anything for me (don't need them to). They are still happy to supply me with masks and filters, and I can call them any time for advice. They will still have an annual review with me to see how I'm progressing, to be honest they're only interested in compliance - I want more than that, I think as patients we all want more than that.

Of course it's your choice, but they don't care about your husband's health any where near as much as you do.

Hehe.. The life of an insomniac. I already thought that you guys must think I am strage being awake "so early" hehe. I think we have a 4-8 hours time difference depending on where in the states or Europe you all are.

Thank you very much Hannibal and we will do that. I am trying to "Pimp up" our machine as I have been told that some functions are simply not on it. I am assuming that it should be easy enough to make the respective changes. I am certainly not scared to go to the doctor but I feel that this one is very useless so I am hoping to find a better one which is fairly challenging but I am hopeful that we end up finding one. I personally wouldn't mind purchasing a new machine but I don't think my husband would be currently open for so I am really trying to work with what we have. There is hope though that they may change the current one so let's see. It's so difficult without having a proper physician that can advise us.

Christine L wrote:

Tahera11979 wrote:I don't know what happened or why 8 cm seemed okay during the titration and not now

Maybe this sounds like a crazy question, but is it possible you are hearing vibrations from leaks under the mask instead of snoring? (Around here these vibrations are sometimes called "mask farts".)

Not crazy at all! How would we know if these are 'mask farts'? The new mask seemed to fit very well so I doubt it though and the noise and vibration is so loud!

jds2001 wrote:

Soothest Sleep wrote:Is it possible the machines, and therefore the Manual, have been updated since then?

If it's an AutoPAP, there's no need for A-Trial - as it can operate as full-time Auto. I just checked my 3-4 month old machine, and there's no A-Trial on it either (though there is a C-Check mode)

I think ours is Cpap Pro which I guess won't give the option. We have C-Check though. Is this anything that can be useful?

Pugsy wrote:First... let's see what 14 does.
Second...you could go back to the supplier and see if they would sell you a full time auto or make a swap or something. All the advice I have been giving you is based on US insurance, DME, Doctor stuff. Doesn't really pertain to where you are. Whole other different animal where you are at.
Third...Cross that "other machine" buying only if we just have to cross that bridge. I have a couple of ideas but let's wait and see if we need to go down that road or not.

What are your ideas? I am sincerely desperate. I took Panadol Night last night and passed out just to be awoken again a few hours later having to keep changing bedrooms. It's really not fun.

My ideas were where to find another machine that wouldn't cost an arm and a leg.

Let's see what 14 cm does...might get lucky.

Update: So, I spoke to everyone involved and we might get the option of upgrading to Auto CPAP instead of Pro which we currently have.
Do you think this would be a wise move and also, by any chance do you know if the Auto offers the option of having a fixed pressure if we needed to at some point?
Thank you again for the advise!

Pugsy wrote:My ideas were where to find another machine that wouldn't cost an arm and a leg.

Let's see what 14 cm does...might get lucky.

It didn't help at all.

Yes...the full time auto machine also has cpap mode available...it's like 2 machines in one plus we can set it in auto mode with minimum to equal max and it functions like cpap mode plus we get FL flags. Right now the Flow Limitation flagging is turned off so those 0 FLs don't mean much.
FL flagging is only available in auto mode.

If they will switch out machines...go for it.

How bad were the snores at 14 cm...was he on his back?

Perfect, we will do so. I really hope that we will be able to sort it out. I am surprised they didn't prescribe it in the first place.

The snores were horrendous! I can't recall which position it was. Most probably on his back.

I am still confused as they mentioned that apparently we can't change the pressure from home. It's odd as we did it but they said it's controlled? Does it make sense and have we been on the same pressure all this time even though it showed different pressures?