Mom's BiPap saga continues

After a year and a half on first APAP (1 yr) and now BiPap for almost 6 months, Mom's AHI still is way too high (from 15-40 AHI). She finally has a mask that is comfortable, doesn't leak excessively, and doesn't cause blisters on her nose. It's not perfect, but it's the best so far. It's slightly too big, and sometimes ends up under her chin, but only once with a "frowny face" on her mask fit over the past 2 weeks. I've lost count of the number of masks she has tried.

Now another ray of hope. Her DME, who has been absolutely wonderful, arranged for her to be the first to receive a modem , as soon as they became available to him. This modem will let the sleep clinic and the DME see her date remotely so her data from every night can be analyzed without physically needing her SD card or her machine. Even better, the DME can remotely make changes to her machine settings. While I doubt the sleep clinic will even look at her data unless prodded by the DME, the DME will look at her data.

The DME has been contacting the sleep clinic and asking for changes based on mom's data even before the modem, but this has been a very slow and cumbersome process. This modem should really speed up making changes. I know it's going to take more trial and error, but at least the DME acknowledges this AHI is unacceptable and will keep working until he gets things right.

Sorry about the difficulties your mom is experiencing.
I case you haven't posted it before, what is the breakdown of the AHI numbers?
Is the mask noted the same one she is currently using or has that been changed to a FFM?
You are blessed with a wonderful DME - most of us don't have that kind of support.

JDS74 wrote:Sorry about the difficulties your mom is experiencing.
I case you haven't posted it before, what is the breakdown of the AHI numbers?
Is the mask noted the same one she is currently using or has that been changed to a FFM?
You are blessed with a wonderful DME - most of us don't have that kind of support.

CG's moms saga has been discussed extensively, perhaps you should read up on it.

Yes, Palerider is correct. For anyone wishing to review what has been happening with my mom and her PAPing difficulties, look for "AHI still erratic, time to wingding?" I know now the correct term is dialwing, but this first started back in March 2014 right after I too was diagnosed with sleep apnea, and therefore had learned enough to realize that while my mom faithfully used her APAP, she was not getting effective therapy. All the sleep clinic and sleep Dr care about, even now, is compliance. Our wonderful DME/RT is the one really working to get things right.

Mom's settings and equipment have changed so may times, I have not tried to list them. I honestly can't remember what mask she is using now. She is on BIPAP, a ResMed Autoset with heated hose and humidifer. The mask is a full face. She can not use a nasal pillow or nasal mask because of severe nosebleed issues and mouth breathing. Her AHI is still very erratic. Occasionally she has a day under 5, but never more than an isolated day. Most of the time her AHI is in the upper teens, and frequently in the mid 20's. Lately it has been over 40 more days then it is under 15.

The other difficulty is Mom knows how to use her machine on a day to day basis, but she doesn't know how to do any screen shots to share her sleepyhead data. I'm an hour away from her with a convoluted works schedule that makes it difficult to help her with this on a regular basis. We will just keep at this until it's working like it should.

College3girls wrote:Yes, Palerider is correct. For anyone wishing to review what has been happening with my mom and her PAPing difficulties, look for "AHI still erratic, time to wingding?"

It would be good to post a current update in this thread as I doubt many will want to go look up the old thread, which i believe has been awhile.

Mom's settings and equipment have changed so may times, I have not tried to list them. I honestly can't remember what mask she is using now. She is on BIPAP, a ResMed Autoset with heated hose and humidifer.

It it an auto bipap or an autset? What does it say next to the power button? I don't believe that the bipap is called an autoset.

Does she know how to upload a photo and send it you via email? Maybe she can take a photo of the screen instead.

zoocrewphoto wrote: It would be good to post a current update in this thread as I doubt many will want to go look up the old thread, which i believe has been awhile.

latecomers really should familiarize themselves with this very complex case instead of just thiking "oh, tldr, I'll just start the questions all over again."

Link to previous thread:

viewtopic/t100308/viewtopic.php?f=1&t=9 ... ingding%3F

palerider wrote:

zoocrewphoto wrote: It would be good to post a current update in this thread as I doubt many will want to go look up the old thread, which i believe has been awhile.

latecomers really should familiarize themselves with this very complex case instead of just thiking "oh, tldr, I'll just start the questions all over again."

I read it back when it was posted. If they can't be bothered to post a full update or copy and paste, why should I go search for their posts? They called the bipap an autoset. Seems to me that would cause a lot of confusion.

zoocrewphoto wrote:

palerider wrote:

zoocrewphoto wrote: It would be good to post a current update in this thread as I doubt many will want to go look up the old thread, which i believe has been awhile.

latecomers really should familiarize themselves with this very complex case instead of just thiking "oh, tldr, I'll just start the questions all over again."

I read it back when it was posted. If they can't be bothered to post a full update or copy and paste, why should I go search for their posts? They called the bipap an autoset. Seems to me that would cause a lot of confusion.

well, that's entirely up to you.

her mom's on a vpap auto. fwiw, as was clear in the original thread.

zoocrewphoto wrote:If they can't be bothered to post a full update or copy and paste...

I'm thinking I have to agree with this. The original data is 2 months old, things are now (often) totally out of control, the most important piece of data is still pending...

OTOH, perhaps the OP is simply tossing in an FYI and not really looking for DWing advice.

palerider wrote:

zoocrewphoto wrote:

palerider wrote:

zoocrewphoto wrote: It would be good to post a current update in this thread as I doubt many will want to go look up the old thread, which i believe has been awhile.

latecomers really should familiarize themselves with this very complex case instead of just thiking "oh, tldr, I'll just start the questions all over again."

I read it back when it was posted. If they can't be bothered to post a full update or copy and paste, why should I go search for their posts? They called the bipap an autoset. Seems to me that would cause a lot of confusion.

well, that's entirely up to you.

her mom's on a vpap auto. fwiw, as was clear in the original thread.

Then why did she call it an autoset? If she has an autoset but thinks it is a bipap, that would be an important piece of information. I responded to what she wrote in her last post.

zoocrewphoto wrote: Then why did she call it an autoset? If she has an autoset but thinks it is a bipap, that would be an important piece of information. I responded to what she wrote in her last post.

which was why I said reading the other thread would save a lot of time, one glance at any of the multitude of charts posted there show clearly that it's a bilevel device, with auto pressure settings.

as to why CG may have called it an "autoset".. I don't know, confusion with the fact that it's an autosetting bilevel, specifically, as shown on the first chart, on the first post of the thread, a s9 vpap auto. she also called it a bipap, which is also technically in error, since that would be a respironics machine, but it's a common misstatement.

none of this is really pertinet to the issue, which is her mother has a very complex case, and robysue and sludge have gone over it in great detail... which has no need to be recapped here. should someone with more knowledge want to help and offer suggestions, then they *need* to "read the patient history" and not say "I can't be bothered to read it, start over and tell me new".

Thanks, to all of the sensible responses. I never expected my post would get so criticized and picked apart. Yes, an auto Bilevel unit. Yes, not getting effective therapy, and yes, just trying to let Sludge and Robysue, in particular, know this complex issue is still a work in progress. Sludge is right, there is not much this forum can do to help Mom at this time, and I wanted to post so folks would know I have been doing as much as possible to follow through on the advice of the forum. All I care about is that my mom gets the proper treatment for her sleep apnea and I appreciate the help Sludge and Robysue, and others have been in the past.

We are lucky to have a Respiratory Therapist/DME who is really going above and beyond to make up for the lack of care on the part of the sleep clinic.

It also illustrates the problem of being on a fixed income in a rural area where it is not so easy to "fire" your Dr and find another. It has been made clear any future appointments will be with the actual Dr and not a nurse practitioner, period.

Sorry if I am confusing any terminology. I've only been at this for 6 months myself, and my treatment has been easy. I had to learn quickly in order to help mom, and I know I wasn't always correct in figuring it out. As the RT said, I illustrate how everything is supposed to work, and Mom illustrates how it is not supposed to work.

College3girls wrote:Thanks, to all of the sensible responses. I never expected my post would get so criticized and picked apart. Yes, an auto Bilevel unit. Yes, not getting effective therapy, and yes, just trying to let Sludge and Robysue, in particular, know this complex issue is still a work in progress. Sludge is right, there is not much this forum can do to help Mom at this time, and I wanted to post so folks would know I have been doing as much as possible to follow through on the advice of the forum. All I care about is that my mom gets the proper treatment for her sleep apnea and I appreciate the help Sludge and Robysue, and others have been in the past.

Sorry if I am confusing any terminology. I've only been at this for 6 months myself, and my treatment has been easy. I had to learn quickly in order to help mom, and I know I wasn't always correct in figuring it out. As the RT said, I illustrate how everything is supposed to work, and Mom illustrates how it is not supposed to work.

I am so sorry that you felt the need to post that you felt criticized and picked apart. What a shame and I am truly embarrassed!

You are getting the best possible advice from Sludge, Robysue and certain others. Stick with them and ignore the rest!

I've read all of your posts and hope between the knowledgeable folks above, as well as your very helpful RT, that your Mom will get the help she needs.

ems wrote:

College3girls wrote:Thanks, to all of the sensible responses. I never expected my post would get so criticized and picked apart. Yes, an auto Bilevel unit. Yes, not getting effective therapy, and yes, just trying to let Sludge and Robysue, in particular, know this complex issue is still a work in progress. Sludge is right, there is not much this forum can do to help Mom at this time, and I wanted to post so folks would know I have been doing as much as possible to follow through on the advice of the forum. All I care about is that my mom gets the proper treatment for her sleep apnea and I appreciate the help Sludge and Robysue, and others have been in the past.

Sorry if I am confusing any terminology. I've only been at this for 6 months myself, and my treatment has been easy. I had to learn quickly in order to help mom, and I know I wasn't always correct in figuring it out. As the RT said, I illustrate how everything is supposed to work, and Mom illustrates how it is not supposed to work.

I am so sorry that you felt the need to post that you felt criticized and picked apart. What a shame and I am truly embarrassed!

You are getting the best possible advice from Sludge, Robysue and certain others. Stick with them and ignore the rest!

I've read all of your posts and hope between the knowledgeable folks above, as well as your very helpful RT, that your Mom will get the help she needs.

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