Mom needs more help prior to DME and Sleep DR app't

[College3girls]

I'm trying to help my mom, who is registered as theresem on the forum. She has been on APAP since June of 2013, with a resmed s9 auto (left at a range of pressure from 4-20 until I intervened.) She never received any follow-up or titration. The DME never supplied any new masks. Needless to say nothing is working, and at the moment she is wasting her time on APAP, despite using it faithfully all night every night.

Thanks to input from all the good folks of this forum, I changed her ramp to 5 min and her pressure range is now 8 for the ramp, and 12-20 for the pressure range. Depspite this, her AHI is still high, over 12 most nights, and sometimes as high as 20. I am not able to post her data because I can't see it on a regular basis. She lives an hour away from me. I did download it for her a few days ago on her computer, and was dismayed to see no consistent improvements. She had one night with an AHI of 7 something, and that is her lowest reading.

I am going with her to the DME Thursday and making sure she also gets a heated hose, which she currently doesn't have, a new humidifier tank, and a mask and headgear of her chosing. I also am going with her to the sleep Dr on Friday morning. You can be both places are going to get an earful from me. And this time, we will go home with the SD card still in the machine. When they got the SD card to check for compliance, it never came back to Mom.

To get to my question, I'm hoping for full mask mask suggestions. She is currently using an FX. Leaks with that woke her up, even before it was completely shot. She'd have to take it off, rub her face, and put it back on to get a seal. She would have this one large leak at the time she woke, and then be able to go back to sleep. She really needs to be able to sleep without a leak waking her up. Amazingly, the high pressure doesn't seem to bother her. Quite the contrary, she said she finds comfort and can feel relaxed knowing she is "getting air".

She tried a quattro Mirage and thought she was allergic to the silicone because it burned the bridge of her nose and made her nose ulcerated. I just think the fit was wrong. She also tried my quattro air- no go. She has a bag tossed in the corner of at least 3 others that did not work. I know one was the Quattro. Everything seems to leak into her eyes. She cranks that FX on really tightly. (again, amazing since she suffers from severe claustrophobia- I've seen her shred clothes to get anything off she perceives as too tight, and forget small spaces like the local caverns.)

She can only try two masks in a 30 day period, and then is stuck with one of them for 6 months. As soon a package is opened, it's hers.

I asked about mask liners and the DME does not carry them. They may have to be her birthday present from me. I'll get them from CPAP.com. The reusable kind would probably be best. What liners are recommended most by all you folks that use them?

Last question- I know it's hard without seeing sleepyhead data, but at this point do I help her fight for a bipap? I will hopefully be able to post some recent data on Thursday, but probably not until that evening. The appointment for the sleep Dr. is Friday morning.

I'm so grateful I found this forum because I know I get better, honest answers here than I do from the insurance driven health "professionals". She does have a few posts on the forum with data from the end of March 2014. She had one night that was an improvement, but nothing as good since then, despite the narrowed pressure range.

Sorry for the length of the post, but her situation is really complicated and desperate. Thank you, Thank you for the anticipated help we will be getting from the real experts on sleep apnea- this forum.

[JDS74]

A couple of things come to mind.
1) Get copies of her sleep study and sleep titration study. That will help you to understand where the pressures might be.

2) Get a copy of the reports from the doctors office. They likely have some of her data from previous visits. You may need to have your mom sign a HIPAA form to allow the doctor's staff to provide you with information.

3) If your mom has a computer and internet access, you may be able to get a remote access program so you can run SleepyHead on her computer from yours and so be able to see the data every day. I think I recall one called "Go to my PC" or something like that.

[College3girls]

Thank you.

First I need to make a correction; Mom is registered at theresmp; I forgot the "p" in the first post in case anyone needs to look at her previously posted data.

I have already had Mom call and add me to her "okay to discuss medical info with this person list" to comply with the HIPPA stuff. I will be asking for a copy of all her data from both the DME and the sleep clinic.

I like the idea of being able to access her computer, but she will need to figure out what her internet issues are first. She hasn't been able to go on-line for some reason the past few days. She will be bringing her computer, APAP machine, all the masks, etc Thursday, and spending the day at my house, so I will be able to get all her recent data then. I'm especially interested in last nights data since mom reported she slept until her usual big leak, fixed the leak, and successfully went back to sleep.

When she tried my quattro air, she woke up to find she had completely taken it off at some point and does't remember taking it off. She's had more nights with less sleep then usual this week due to leaks, and when she inspected her mask, realized it is actually reached the point of shredding, so that isn't helping anything.

I'll try to get my very computer-savvy brother to help us get to the point of sharing data. Using skype comes to mind also. Skype has a share screen feature, and that I know how to do.

[Julie]

Pad-a-Cheek.com for liners.

[Bama Rambler]

I think that this is your mom's old thread.
She apparently has the ResMed S9 AutoSet so that's a very good machine.

There are a lot of masks out there, but in order for us to make suggestions it would help if we knew which ones she's tried before and what about them didn't work. I've had good luck with the Mirage Quattro, Flexi-Fit 431 and am currently using the F&P Simplus. At first jerk I like the Simplus better than anything I've tried. Because I'm a mouth breather I haven't tried any nasal mask or pillows.

[sawinglogz]

Pad-a-Cheek.com for liners.

This. Made all the difference in the world for me with mask comfort and leaks.