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New face frame, pillows, increased AHI
#1
After a 3 month fight with the DME who kept "deleting" my order for supplies, the doctors office not signing off for supplies losing the DME's request, I received supplies this week.

Night three using the new gear and my AHI's have increased significantly and I feel like I have hypoxia. Before changing to new gear I was seeing numbers at 1 and some below with a marked difference in how I feel at 1 or below. The below 1 seems to be my magic number for feeling human.

With the new gear my numbers have shot up over 4, leak rates still 2 or less. Has anyone had this happen? Before when I received new pillows it seemed to help.

Thank you.
(No, I have not uploaded data programs yet. Need to buy a home computer still, but did find the reader card)
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#2
(12-16-2015, 01:28 PM)Dagmar1 Wrote: With the new gear my numbers have shot up over 4, leak rates still 2 or less. Has anyone had this happen? Before when I received new pillows it seemed to help.

Some machines have a setting for the type of mask or hose, which allows the machine to compensate for smaller diameter hoses, pillows, etc. so it can still figure out what to do.

If you can post what kind of machine & what kind of mask you had, and what you have now, I'm sure someone will have an idea what to check.

Also, if you switched form a nasal mask to a full face mask, it may be pushing your jaw back, making things worse.
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#3
Dagmar1 what mask are you wearing and also have replaced? Maybe add it to your info also.
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#4
Everything is the same as in my profile. Not different kind of gear, just new replacements.

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#5
(12-16-2015, 01:28 PM)Dagmar1 Wrote: After a 3 month fight with the DME who kept "deleting" my order for supplies, the doctors office not signing off for supplies losing the DME's request, I received supplies this week.

Night three using the new gear and my AHI's have increased significantly and I feel like I have hypoxia. Before changing to new gear I was seeing numbers at 1 and some below with a marked difference in how I feel at 1 or below. The below 1 seems to be my magic number for feeling human.

With the new gear my numbers have shot up over 4, leak rates still 2 or less. Has anyone had this happen? Before when I received new pillows it seemed to help.

Thank you.
(No, I have not uploaded data programs yet. Need to buy a home computer still, but did find the reader card)

I recently got a replacement P10 nasal pillow frame, and I swear the exhalation ports did not work the way they were supposed to. They blew air straight out instead of diffusing it. I complained, so they sent me a whole new mask instead of just the frame, and it works fine. I have also noticed significant variability in the quality of the replacement pillows. Some are too firm, some too soft, and some wear out sooner than others and seem to be more leak prone.

In short, I don't think what you're experiencing is out of the question. In fact, I believe that replacement parts are often lower quality those supplied with a brand-new mask assembly in a box - don't know why, but that seems to be the case.

Don't take it lying down - DEMAND better from your DME! Let them know it's not good enough and threaten them if you have to. They will walk all over you if you don't. Call me cynical, but that has been my experience thus far.
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#6
Thank you Possum.

Now that you've mentioned it, I do notice the vents "blowing" instead of diffusing like my old frame, and the pillow is definitely stiffer.

The DME has been a nightmare including verbally abusing me and physically threatening me when there in person by one specific -large-male RT. I saw on the forum that there is another person who sounded like they went to the same DME. I am ready to write the state board, and am hoping that the other person will respond to the PM I sent them (in case you are reading this).

My existing insurance company would not allow me to change DME. My solution is that with the new enrollment for 2016 insurance I changed insurance companies.

I will still call the DME and see if they will switch the frame out since new coverage does not start until Jan 1, 2016. They sent the wrong hose for my machine too, a generic instead of brand that does not fit, and they have refused to change it out. Pretty frustrating since I've had to wait 3 months for supplies and it is here at the end of year.

It seems that the older generation is getting ignored and put into the category of being catatonic idiots. What I say to that is, we may be older, but all that living and having to deal with similar attitudes has given us more experience at being meaner too!

Thank you.
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#7
(12-16-2015, 08:07 PM)Dagmar1 Wrote: Thank you Possum.

Now that you've mentioned it, I do notice the vents "blowing" instead of diffusing like my old frame, and the pillow is definitely stiffer.

The DME has been a nightmare including verbally abusing me and physically threatening me when there in person by one specific -large-male RT. I saw on the forum that there is another person who sounded like they went to the same DME. I am ready to write the state board, and am hoping that the other person will respond to the PM I sent them (in case you are reading this).

My existing insurance company would not allow me to change DME. My solution is that with the new enrollment for 2016 insurance I changed insurance companies.

I will still call the DME and see if they will switch the frame out since new coverage does not start until Jan 1, 2016. They sent the wrong hose for my machine too, a generic instead of brand that does not fit, and they have refused to change it out. Pretty frustrating since I've had to wait 3 months for supplies and it is here at the end of year.

It seems that the older generation is getting ignored and put into the category of being catatonic idiots. What I say to that is, we may be older, but all that living and having to deal with similar attitudes has given us more experience at being meaner too!

Thank you.

I did call the DME supply center and told them the vents were blowing, not diffusing, and they said I must have gotten a defective one and they will replace it. So all good there.

They sent the wrong hose and I was referred to my DME center to see if they have the right one.

I wore my old frame and another set of pillows last night and it did drop my AHI significantly.

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