Update on Mom- its so important to keep trying

[College3girls]

A couple of years ago folks on this forum, Pugsy, Sludge, and others, attempted to help me assist my then 86 year old Mom with complicated sleep apnea issues.

Mom tried APAP, was very complient with use, but never had improvement in her AHI, running in the 20's through 40's. She suffered through sores on the bridge of her nose, leaks, and excessive pressures, with her APAP running at the max pressure all night, every night.

Finally, after a full year or more, her sleep clinic switched her to BIBAP, but nothing changed, and essentially Mom was told how wonderful it was she was compliant with use, and therefore she was getting effective therapy, even though her AHI was averaging in the 20's on BIBAP.

Then she started having issues with mask-fit, and stopped using anything for over 8 months, with diabetic issues and 6 hospitalizations over the past year. None directly apnea related.

I convinced her to go back to her CPAP supplier a few days ago, who has her trying the Amaraha View. First night, AHI 1.2!!!!!! Last night, night 2, she again used the mask all night, woke up with it still on, and said no leaks woke her up. She doesn't remember how to check her AHI or mask fit, so I'll be looking at that through her SD card and sleepyhead next week. However, just that she used it all night is wonderful.

I do have a question, even though I think I know the answer- her first night, her leaks were supposedly high enough she had a "frowny face" with that great AHI. If her AHI is good, and the leaks did not wake her, can we ignore any frowning faces?

My message from all this- to all struggling to make Papping work; don't give up or allow a loved one to give up.

Mom may be turning 88 next month, but she is still young at heart and has a lot of living left to do.

[Lucyhere]

A couple of years ago folks on this forum, Pugsy, Sludge, and others, attempted to help me assist my then 86 year old Mom with complicated sleep apnea issues.

Mom tried APAP, was very complient with use, but never had improvement in her AHI, running in the 20's through 40's. She suffered through sores on the bridge of her nose, leaks, and excessive pressures, with her APAP running at the max pressure all night, every night.

Finally, after a full year or more, her sleep clinic switched her to BIBAP, but nothing changed, and essentially Mom was told how wonderful it was she was compliant with use, and therefore she was getting effective therapy, even though her AHI was averaging in the 20's on BIBAP.

Then she started having issues with mask-fit, and stopped using anything for over 8 months, with diabetic issues and 6 hospitalizations over the past year. None directly apnea related.

I convinced her to go back to her CPAP supplier a few days ago, who has her trying the Amaraha View. First night, AHI 1.2!!!!!! Last night, night 2, she again used the mask all night, woke up with it still on, and said no leaks woke her up. She doesn't remember how to check her AHI or mask fit, so I'll be looking at that through her SD card and sleepyhead next week. However, just that she used it all night is wonderful.

I do have a question, even though I think I know the answer- her first night, her leaks were supposedly high enough she had a "frowny face" with that great AHI. If her AHI is good, and the leaks did not wake her, can we ignore any frowning faces?

My message from all this- to all struggling to make Papping work; don't give up or allow a loved one to give up.

Mom may be turning 88 next month, but she is still young at heart and has a lot of living left to do.

Ohhhh... how completely wonderful! And, how fortunate she is to have a daughter like you. Bravo to you both

Edit: Sorry, didn't see the "leak" issue... was so excited seeing your last two sentences. I know someone more versed in this than I will respond to your post.

[chunkyfrog]

The frowny face is notoriously unreliable.
I skip past it and read the leak number.

[Michelle-OH]

Good for your mom! My mom just turned 88 on the 11th and I'm sure she would never go along with using a cpap, my dad's was so loud all those years ago and she would expect that now and probably just say no. I wouldn't worry about that frowny face with AHI's like that!

[Sonnyboy]

Re:
I do have a question, even though I think I know the answer- her first night, her leaks were supposedly high enough she had a "frowny face" with that great AHI. If her AHI is good, and the leaks did not wake her, can we ignore any frowning faces?

No, you want to check your mom's data on sleepyhead and let us know what the data shows you. The AHI is not reliable in the presence of significant leaks.

Having said that, you are right, it is absolutely wonderful that your mom slept through the night and kept her mask on! Great way to start on return to Cpap.

[Gasper62]

The right mask can make all the difference in the world ! I love success stories !

[robysue]

I do have a question, even though I think I know the answer- her first night, her leaks were supposedly high enough she had a "frowny face" with that great AHI. If her AHI is good, and the leaks did not wake her, can we ignore any frowning faces?

Welcome back College3girls. I remember some discussions between me, Pugsy, and Sludge about your mom's case.

Mr. Red Frowny Face is supposed to show up when the leak rate is AT or ABOVE 24 L/min for at least 30% of the night. That's a potentially serious problem

If I were you, I'd look at your mom's data in SleepyHead and see just how bad the leak line actually looks. If it looks to be above the Resmed Redline of 24 L/min for 30% or more of the night, then there's a real chance that the AHI data that is recorded during the largest of the leaks may not be accurate. You can drill down and actually see what the breath by breath data is. If the machine is obviously having little or no trouble tracking the breathing during the large leaks and there's nothing that looks like unflagged apneas/hypopneas when you scroll through the data, then it may indeed be prudent to do some watchful waiting.

How often can you load your mom's data into SleepyHead to monitor what's really going on with the leaks and the AHI? How often can you afford to scroll through the breath-by-breath data in the flow rate looking for missed events?

[College3girls]

I'm with her all day, and stay overnight Tuesdays, but she has no internet access to be able to view anything until I'm at home. I I have a spare SD card, so I can keep changing out cards, and will be able to look at data at least once weekly. I'll see if I need a refresher course in how to post the data. I'll give it a try before asking, but please be patient with me. (My kids tend to watch me with computer tasks and just sadly shake their heads.)

Drat! I was hoping we could just ignore Mr. Frowny, since this is the first time any leaks did not wake her, and her AHI was great. In the past, if leaks woke her, her AHI was also sky high. Before this week, even if leaks didn't wake her, I think I can count on my fingers the times she ever had an AHI lower than 15. Innumerable times of over 20 or higher.

I will post data ASAP, but it won't be before Wednesday of next week.

At least we seem to finally have a mask that she can tolerate- I've lost count of the number of masks she has tried that seem to work in front of the supplier, but of course, they never check when she is actually wearing it in bed.

I actually did have the sleep clinic directly tell me that an AHI of 20-40 was at least some therapy, compared to not using her CPAP. They felt these numbers were the best we could hope for, after trying for two years now, but they did willing issue the new mask.

[JDS74]

If your budget allows, you might see about getting a really inexpensive laptop or tablet to keep at you mom's house.
Then you could track more frequently.

[Jay Aitchsee]

Did you remember to change the mask setting from Nasal for the N10 to Full Face for the Amara? I believe the Amara has a somewhat higher vent rate than the N10, and, since ResMed uses the Mask Setting to calculate leak, not changing the setting could cause the leaks to appear greater than they actually are. It may not be a significant difference, but it wouldn't hurt to check.

[College3girls]

Sorry about any confusion of equipment. My profile lists my APAP and mask. Mom is on BIBAP with an Amahara View FF.

I do own a laptop, but Mom doesn't have any internet, so while I could download her SD card to my computer, I can't post anything to the forum until I'm home again, with free time to go online.

I am likely to need assistance in interpreting leak data, and will be posting that as soon as I am able.

[robysue]

College3girls,

Please check your pm's.

[College3girls]

Thanks Robysue,
I replied to you, via PM

[palerider]

Did you remember to change the mask setting from Nasal for the N10 to Full Face for the Amara? I believe the Amara has a somewhat higher vent rate than the N10, and, since ResMed uses the Mask Setting to calculate leak, not changing the setting could cause the leaks to appear greater than they actually are. It may not be a significant difference, but it wouldn't hurt to check.

the amara view and the N10 have a nearly identical vent rate. (as do most masks).

the mask setting isn't used to calculate leak, it's used to calculate pressure compensation for the varying mask *resistance* in the different classes of masks.

http://www.directhomemedical.com/masks- ... ctions.pdf
http://www.resmed.com/us/dam/documents/ ... er_eng.pdf

it's what respironics copied in their 60 series with the 'system one resistance'

[Jay Aitchsee]

Thanks PR, apparently I read my sources wrong. I thought the Amara vent rate was about 10 L/min greater than the N10, but from your references, I see that's not the case. And I agree, most masks are pretty close.