Mom's BiPap saga continues
- College3girls
- Posts: 95
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- Location: Upstate NY
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.
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.
_________________
Mask: AirFit™ N10 Nasal CPAP Mask with Headgear |
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control |
Additional Comments: Assisting Mom, on Resmed BIPAP with climate control; w/Amahara View FF |
Ready for a good night's sleep.
Re: Mom's BiPap saga continues
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.
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.
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Re: Mom's BiPap saga continues
CG's moms saga has been discussed extensively, perhaps you should read up on it.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.
Get OSCAR
Accounts to put on the foe list: dataq1, clownbell, gearchange, lynninnj, mper!?, DreamDiver, Geer1, almostadoctor, sleepgeek, ajack, stom, mogy, D.H., They often post misleading, timewasting stuff.
Accounts to put on the foe list: dataq1, clownbell, gearchange, lynninnj, mper!?, DreamDiver, Geer1, almostadoctor, sleepgeek, ajack, stom, mogy, D.H., They often post misleading, timewasting stuff.
- College3girls
- Posts: 95
- Joined: Wed Feb 05, 2014 6:46 pm
- Location: Upstate NY
Re: Mom's BiPap saga continues
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.
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.
_________________
Mask: AirFit™ N10 Nasal CPAP Mask with Headgear |
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control |
Additional Comments: Assisting Mom, on Resmed BIPAP with climate control; w/Amahara View FF |
Ready for a good night's sleep.
- zoocrewphoto
- Posts: 3732
- Joined: Mon Apr 30, 2012 10:34 pm
- Location: Seatac, WA
Re: Mom's BiPap saga continues
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.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?"
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.
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Who would have thought it would be this challenging to sleep and breathe at the same time?
Re: Mom's BiPap saga continues
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."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.
Last edited by palerider on Sun Aug 31, 2014 12:34 pm, edited 5 times in total.
Get OSCAR
Accounts to put on the foe list: dataq1, clownbell, gearchange, lynninnj, mper!?, DreamDiver, Geer1, almostadoctor, sleepgeek, ajack, stom, mogy, D.H., They often post misleading, timewasting stuff.
Accounts to put on the foe list: dataq1, clownbell, gearchange, lynninnj, mper!?, DreamDiver, Geer1, almostadoctor, sleepgeek, ajack, stom, mogy, D.H., They often post misleading, timewasting stuff.
Re: Mom's BiPap saga continues
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- zoocrewphoto
- Posts: 3732
- Joined: Mon Apr 30, 2012 10:34 pm
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Re: Mom's BiPap saga continues
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.palerider wrote: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."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.
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Mask: Quattro™ FX Full Face CPAP Mask with Headgear |
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control |
Additional Comments: Resmed S9 autoset pressure range 11-17 |
Who would have thought it would be this challenging to sleep and breathe at the same time?
Re: Mom's BiPap saga continues
well, that's entirely up to you.zoocrewphoto wrote: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.palerider wrote: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."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.
her mom's on a vpap auto. fwiw, as was clear in the original thread.
Get OSCAR
Accounts to put on the foe list: dataq1, clownbell, gearchange, lynninnj, mper!?, DreamDiver, Geer1, almostadoctor, sleepgeek, ajack, stom, mogy, D.H., They often post misleading, timewasting stuff.
Accounts to put on the foe list: dataq1, clownbell, gearchange, lynninnj, mper!?, DreamDiver, Geer1, almostadoctor, sleepgeek, ajack, stom, mogy, D.H., They often post misleading, timewasting stuff.
Re: Mom's BiPap saga continues
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...zoocrewphoto wrote:If they can't be bothered to post a full update or copy and paste...
OTOH, perhaps the OP is simply tossing in an FYI and not really looking for DWing advice.
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- zoocrewphoto
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Re: Mom's BiPap saga continues
palerider wrote:well, that's entirely up to you.zoocrewphoto wrote: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.palerider wrote: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."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.
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.
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Mask: Quattro™ FX Full Face CPAP Mask with Headgear |
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control |
Additional Comments: Resmed S9 autoset pressure range 11-17 |
Who would have thought it would be this challenging to sleep and breathe at the same time?
Re: Mom's BiPap saga continues
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.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.
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".
Get OSCAR
Accounts to put on the foe list: dataq1, clownbell, gearchange, lynninnj, mper!?, DreamDiver, Geer1, almostadoctor, sleepgeek, ajack, stom, mogy, D.H., They often post misleading, timewasting stuff.
Accounts to put on the foe list: dataq1, clownbell, gearchange, lynninnj, mper!?, DreamDiver, Geer1, almostadoctor, sleepgeek, ajack, stom, mogy, D.H., They often post misleading, timewasting stuff.
- College3girls
- Posts: 95
- Joined: Wed Feb 05, 2014 6:46 pm
- Location: Upstate NY
Re: Mom's BiPap saga continues
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.
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.
_________________
Mask: AirFit™ N10 Nasal CPAP Mask with Headgear |
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control |
Additional Comments: Assisting Mom, on Resmed BIPAP with climate control; w/Amahara View FF |
Ready for a good night's sleep.
Re: Mom's BiPap saga continues
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!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.
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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Re: Mom's BiPap saga continues
+100ems wrote: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!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.
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.
_________________
Mask: SleepWeaver Elan™ Soft Cloth Nasal CPAP Mask - Starter Kit |
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control |
Additional Comments: Use SleepyHead |