Lorrubdb Therapy Thread: Fine-tuning therapy with Oscar

[Lorrubdb]

Ok thanks will do. BTW I do see some very strange things when I'm down in the rabbit hole...will be on the lookout for the madhatter but pretty sure I saw that smiling cat

[SarcasticDave94]

I'm probably the mad character

[Lorrubdb]

Lol..thought I recognized you!

[Lorrubdb]

I was doing really well but last night CAs shot up over one and AHI over 2. 

 My EPR is currently at 3- should I decrease to 2 ? I also increased my minimum pressure in hopes of further controlling flow limits. Could that be causing the CA, should I lower it again to 8?  I know I had problems with leaks last night, had been doing better with that too. Also forgot to wear my soft collar and put it on middle of night. 

Just when I thought I knew what I was doing! Nope need help!

I  attached charts for last 3 nights.






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[SarcasticDave94]

An AHI of 2.x is still half the expected treated level, or I should say more than twice as good as medical requirements to say you're treated. All other stats look acceptable at least. It looks like there were 8 CA event flags over 7 plus hours, not significant. These may be actual CA or breath holding while moving in your sleep. Still, 8 in 7 hours is very minimal.

I will not suggest editing anything due to one night that stats are worse. This is very much like doctors that get titration data from one night and want this info to dictate your therapy settings for the next several years. Do not spin the dial for one night's info.

Look for trends.

How did you feel? Stats can help, but always consider how you feel first. You didn't include how you felt, but that stats are worse, so you seem to conclude you are worse off. Example: my therapy feel was good at 3 AHI or less. I cared more for how I felt than pretty charts and good looking stats.

My suggestion? Hold the settings where they are for a night, see what you feel like next use, and then look at stats. What changed or stayed the same? Did it continue to go worse? I think base a trend on 3 nights minimum.

[Lorrubdb]

Thanks Dave, you are very reassuring. Glad you think all looks ok and I hear what you’re saying. I once again got obsessed with stats and fell down the rabbit hole. My usual MO with everything! I did forget the feel check first -guess I feel more tired but otherwise ok. The whole night therapy thing -up and down fiddling with the mask, sleeping in the right position, wearing the collar etc is itself exhausting so can’t blame fatigue all on numbers. But thanks so much for the great advice and for always helping me and calming me down. BTW, just noticed you’re not on therapy anymore and wondered why if you don’t mind me asking?

[SarcasticDave94]

Thumbnail sketch is that various sleep pulmonary doctors I've seen, 4 separate groups, none can do much more than sleep study, Titration and discuss. They decided a few years ago I've got COPD, but now it's Asthma so they say. I had to fight to get sleep study data in front of the first doc in '17 to realize BPAP wasn't at all good for a pre-existing Central Apnea sufferer. ASV did well for about 2 years till pneumonia and bronchitis in 2019. Then ASV stopped synchronizing with my breathing and I can't use it because ResMed's ASV has no time control. Since then I've fired and hired the other new doctors to get therapy treatment above ASV. No go. They're stubbornly sticking with insurance restrictions rather than get off their fat butt and fight for a patient needing a correct machine. The data is there to prove something above ASV should be scripted but they're too lazy to help.

[Lorrubdb]

Geez That’s terrible,  I’m so sorry you had to go through so much and still have no help. I know, it’s so hard to find a good doc especially  for a complex case like yours. They just don’t wanna do much. Did any of them  try to get the ASV like write a letter requesting  it and appeal denials? If not, keep trying to find the right doc, there really are some good ones, around 10% who are the real deal, you just have to find them. I know bc I also have complicated GI problems and went to a lot of docs who just didn’t want to do anything hard, so lazy then finally found an amazing one, really cares, so thorough,appeals denials, struck gold! So hope you can find someone like that that too. Don’t give up trying! How do you even manage with untreated central apneas and copd/bronchitis? How do you generally feel? Are you on inhalers /oxygen? You always sound so chipper too, would never know.  So nice of you to help people like me when you don’t even have therapy you need. My husband has copd and is almost always sick, feels weak, coughs  up green stuff  all the time, doc doesn’t do much either, just gives him antibiotics that don’t really work and inhalers. Doesn’t qualify for oxygen yet but will eventually. Funny, we both had sleep apnea tests, I have it and he doesn’t.

[SarcasticDave94]

My fail on ASV is lack of time controls. Newest doc at Penn State Hershey group wants me back on ASV. I might have to give it another go despite what I feel about it. Yes with inhalers and a nebulizer I use very little. No oxy as I don't have the numbers, so I'm not bad off with COPD.

OK well that's enough from the psychotic one.

That's something we don't do here is quit. I think it's in the board rules somewhere. Lots of my doc appointments are duck roasts.

Keep at your therapy.

[Lorrubdb]

I'm not sure what you're talking about really-ASV with time controls but sounds like this new doc is good and trying to help. I'm sure you're more knowledgeable than him and all the docs you see which must be so frustrating when you know exactly what you need and they just don't understand.  But yes give it another try, you never know, maybe this time will help! Hope so, sending prayers your way.

I felt awful this morning and then checked the data which is pretty good-so wonder if I checked first I would've felt better? Amazing how some numbers influence your mind!.  I did get a oxy ring  black Friday sale on amazon. Looks like I dipped below 90 a couple of times-to 89 - I was surprised, thought the cpap would prevent that but still was mostly okay.  I can see I'd be trouble without it. I couldn't figure out how to import into Oscar-it's Wellvue, finally gave up after around a thousand tries. Here's my chart, do you think my flow limits are too high still or oikay? Do you think I should turn up the min pressure-now at 10.  I have it stuck in my mind what you said about watching for trends.

Thanks Dave

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