One Year Anniversary and Perplexed

[SarcasticDave94]

Spy Car,

Sorry for delay.
My ResMed ASV machine feels just like BiPAP in normal operation, but it's got the power to push a breath if needed. Patient & clinical settings may be similar to ResMed BiPAP but I'm not certain as I had a DreamStation BiPAP prior to ASV. Clinical settings are EPAP min/max and pressure support min/max. The machine decides IPAP. It's very quiet BTW. I'm using F20 FFM BTW successfully. And I'm using ClimateLine heated hose & humidifier.

Best to your success, Dave B.

[Sleeprider]

Not in your case. You felt terrible because you had so many Apnea events which are being caused mostly by CA  events.. Your body didn't get any rest. But don't listen to sleeprider because his advice might actually help you.

Please spare me the sharp comments. I greatly respect Sleeprider's advice and am in a spot with a sleep doctor more involved in the case than I expected who has a different take. I've already apologized to Sleeprider for actively putting him into a position tries his best to avoid, by soliciting his help with a doctor in the picture.

If I need to prove a Bi-level doesn't work to get to an ASV machine it behooves me to use the settings the sleep doc has prescribed. All things being equal, I'd prefer following Sleeprider's advice. But I have real world constraints.

I hope you understand that. Additionally raising the PS to 5 with 11/4 did improve my numbers (still not great) and I slept at least.

I'm a person of goodwill who is just doing his best to get his life back. Cut me a break.

Bill

Bill, this is a "big picture" thing.  I have provided both my best judgement, and at the same time suggested you follow the doctor's recommendations in spite of the fact they are nearly guaranteed to make your results worse.  I just think this is the path to ASV which is the desired outcome in your case.

[Spy Car]

Not in your case. You felt terrible because you had so many Apnea events which are being caused mostly by CA  events.. Your body didn't get any rest. But don't listen to sleeprider because his advice might actually help you.

Please spare me the sharp comments. I greatly respect Sleeprider's advice and am in a spot with a sleep doctor more involved in the case than I expected who has a different take. I've already apologized to Sleeprider for actively putting him into a position tries his best to avoid, by soliciting his help with a doctor in the picture.

If I need to prove a Bi-level doesn't work to get to an ASV machine it behooves me to use the settings the sleep doc has prescribed. All things being equal, I'd prefer following Sleeprider's advice. But I have real world constraints.

I hope you understand that. Additionally raising the PS to 5 with 11/4 did improve my numbers (still not great) and I slept at least.

I'm a person of goodwill who is just doing his best to get his life back. Cut me a break.

Bill

Bill, this is a "big picture" thing.  I have provided both my best judgement, and at the same time suggested you follow the doctor's recommendations in spite of the fact they are nearly guaranteed to make your results worse.  I just think this is the path to ASV which is the desired outcome in your case.

I understand this and deeply (deeply) appreciate your time, your kindness in helping so many people (me included), and your knowledge. It is comforting to have the support and encouragement. I hope you know how much your input is appreciated.

I hoped the Bi-valve might help. I had no particular reasons to believe it would, but I'm open to just about any solution at this point. Feeling like a Zombie is not the way to go through life. 

At this point, I'm wondering if I'm not better with a "fail" that puts me into a position where I begin the battle to try an ASV? I gather your answer would be "yes." 

Last night was marginally better. Slept some. Not great. AHIs at 6.42. But the percentage of CA events when down to about one-third. I have found the higher percentage of CAs the more I feel wrecked. Why is that?

I had one spike in SpO2 down to 86, but here are the other numbers from last night:

pO2Blood-oxygen saturation percentage (%)
W-Avg: 93.28   Min 86.00  Median 93.00 95% 97.00 Max 99.00

I'm at least feeling like I can function today. I'm going to take the family to the beach.

Best to all,

Bill
 
ETA: There is one thing about the set up on the Bilevel (AirCurve 10 Auto) I don't like and wonder if it is changeable w/o touching the pressures. It seems to me that the IPAP stops early. I have a naturally long breath. the machine is dumping up at about 60% of the way through my natural breath, and I feel this is messing with my natural breathing pattern and it isn't helping my sleep. 

Can I change this feature so the IPAP doesn't dump out so soon?

[Sleeprider]

The settings I suggested earlier had some timing settings that delay onset of IPAP and keep it on a bit longer. Ti Max gives you more time to complete the inhalation phase, and a setting between 2.0 and 2.2 may solve your problem. If your inspiratory effort is weak or resembles flow limitation, increasing Ti min to 1.0 can prevent the machine from cycling to EPAP too soon. My suggestion was the more conservative of the two. The trigger sensitivity has more to do with "sensing" the start of inhalation, and that response can be set higher (more sensitive/sooner) or lower (less sensitive/later). Default is medium.

[Spy Car]

The settings I suggested earlier had some timing settings that delay onset of IPAP and keep it on a bit longer.  Ti Max gives you more time to complete the inhalation phase, and a setting between 2.0 and 2.2 may solve your problem.  If your inspiratory effort is weak or resembles flow limitation, increasing Ti min to 1.0 can prevent the machine from cycling to EPAP too soon.  My suggestion was the more conservative of the two.  The trigger sensitivity has more to do with "sensing" the start of inhalation, and that response can be set higher (more sensitive/sooner) or lower (less sensitive/later). Default is medium.

Thank you so much for this information Sleeprider. I will work on the settings for tonight.

Cherrs!

Bill

[Spy Car]

Another #$%@-ing awful night!

I'm seeing "Snore" out of control, for the first time ever. What's that about?

I did adjust timing settings (not pressure) to attempt to get breaths feeling natural.

But what a dismal night. I'm glad tonight will be my last night. I was really looking forward to trying a Bi-level, but the doctor prescribed setting have been torture.

Bill

[Spy Car]

Another terrible (and mercifully final) night on the Bi-level.

I return it soon. This morning.

Question. I'm supposed to fill out a form that asks: Could you tolerate APAP [they mean Bi-level] at home?

How do I answer this? Mostly the experience felt like anti-therapy and a mild torture. But I used the machine. So did I "tolerate" therapy, or not? 

Bill (who is feeling sleep-deprived and cranky)

[Spy Car]

A quick update. After the disastrous experience with an AirCurve Bi-level at prescribed settings, I had a phone consultation with my sleep doctor yesterday. 

When his line of questioning mirrored the "so you prefer APAP to Bi-level?" position that I understood he trying to present as my only options in his emails, I told him I didn't feel either option was providing optimal therapy. 

I told him that I'd like to pursue the trial of a machine designed to treat people with a mix of CAs and Obstructive apneas, such as myself. He did not seem amused that I was aware of ASVs. 

Not the answer he wanted to hear.  

Then to knock down the idea he starting suggesting things about the data that were not so and he became more-than-slightly annoyed to learn that I had captured the data on my end and that I dared to contradict him. 

He said, "99% of my patients are not like you." I'm not sure if he could tell if that comment provoked a smile on my end?

This guy has a good reputation. And I know he's under both time pressure and cost-containment pressures.

In the end, he ordered an in-house sleep study (I've only had a home study thus far) with APAP half the night and ASV during the other half.

I don't like feeling like I need to battle with doctors to get proper care, but....

Thanks to you all for making me a more informed patient who can participate in getting the care I need.

Best,

Bill

ETA: Any tips/suggestions for the study that I might not be aware of?

[SarcasticDave94]

IMO no additional prep necessary for the PSG AKA sleep study. It's ironic we didn't study for it, but...

Sorry. Seriously, my 3 sleep studies were all basically the same. Note that my ASV PSG the lab scheduled a special tech for it. On my end though it was exactly the same, excepting this 3rd tech did have me change masks 3x during the ASV test.

[Spy Car]

IMO no additional prep necessary for the PSG AKA sleep study. It's ironic we didn't study for it, but...

Sorry. Seriously, my 3 sleep studies were all basically the same. Note that my ASV PSG the lab scheduled a special tech for it. On my end though it was exactly the same, excepting this 3rd tech did have me change masks 3x during the ASV test.

Ha ha! 

Does the ASV feel very different than an APAP?

Bill