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Newbie: Severe CSA, OSCAR help request.
#31
RE: Newbie: Severe CSA, OSCAR help request.
Eh. I mean, yes... having supplemental oxygen at night has increased my average SpO2 by 1-1.5% overall, to 91 or so, rather than 89-90%. I sometimes spend less time under 90% than without it, but sometimes even WITH it, I'm spending on average 20% of the night below 90% (which is usually 1.5 hours) and around half the night in >3% SpO2 drop. My minimums are generally a little higher too, low seventies seem to be the worst drops I'm getting now, and most of the time it's in the 80s or very high 70s... so better than <61% that my Viatom pulse ox could record, that's for sure, or the 45% that my Contec pulse ox caught.

Apnea-wise, my AHI is reduced a little - averaging around 15, almost always over 10, and has got as high as 33 even WITH oxygen therapy. But the reason it hasn't improved my oxygenation figures more is that it's basically just... shoved a good number of my centrals into the "almost but not quite 10-second" events that OSCAR (mostly) tags, and they're ALL associated with a significant drop in oxygen level too. I mean, if 10 seconds is dropping your sats by 15%, then you wouldn't expect an 8 or 9-second one to somehow NOT be causing a desat. But I feel like the vent clinic is genuinely just interested in sats over AHI. Nobody even LOOKED at my results on the machine, and considering the sleep clinic and vent unit are separate, and the Vent unit don't use the Resmed CPAPs... *shrug* I doubt they even had the Resmed software and access, let alone looked at the data.

Still, I finally, FINALLY got my echo done a couple of days ago, and although I don't have the exact figures, it was clear enough for the doctor to say it was clearly over their "normal" limit of 55% and so yep, no barrier now with that to getting ASV, I hope. My only issue is that the ventilation unit doesn't usually use Resmed products, and I'm almost certain that the ASV make/model they use isn't covered by OSCAR (I know for sure I'd never heard of it, and I can't even remember what it was now). I'm hoping if I ask them nicely that they'll get me the Resmed Aircurve 10, even if I have to pay for it, but we'll see. Otherwise, it's back to the drawing board.

I have a follow-up appointment on the 4th. Hopefully, they'll have my full echo results by then (they should do, it's the same freaking hospital after all, but you never know) and will FINALLY give me the ASV. If not, at this point I will give up and just... I dunno. *sigh* I guess I'll have to just try and find one myself.
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#32
RE: Newbie: Severe CSA, OSCAR help request.
So, finally, some kinda hopefully maybe positive news. I had my telephone appointment today with the doctor who was... not that impressed to find that they had sent me home with oxygen and CPAP because she'd wanted me on ASV or at least BiPAP.

Long story short, after much trying to communicate because she didn't seem to grasp that I had the ability to a) see my CPAP data and b) also see my pulse ox data from when I was sleeping, she asked me to email her some data (which I did) and she's going to review those, follow up on my echo results, and then discuss with the team. I've persuaded her that my first choice because I'm bedbound and getting to the hospital is so difficult (and wipes me out for days) to actually try an at-home trial of ASV, and she's going to see if the team will agree to that, and if not, she'll try to arrange for me to at least come in as a day patient, get set up in the AM, run it during the day to make sure nothing serious happens (! I genuinely don't know what they think will but here we are) and then send me home... but she's going to push to have the home ASV test done. So... fingers crossed. She's going to call me on Friday and let me know.

Eleven months and counting...!
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#33
RE: Newbie: Severe CSA, OSCAR help request.
That's good news. But no you're not breaking my not correct machine record, mine's at 2 and a half years with next quack appointment February 16.
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#34
RE: Newbie: Severe CSA, OSCAR help request.
I'm very much hoping NOT to break that record. LOL But I suspect I will need to find my own Resmed ASV, sadly. We'll see. At least if I get ANY ASV and it looks to be effective I can ask about getting a Resmed instead.
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#35
RE: Newbie: Severe CSA, OSCAR help request.
So good news! Looks like I'm starting ASV tomorrow (assuming there's no trouble collecting the machine).

Pretty sure it's going to be a brick (or at least a machine not supported by OSCAR as of yet) and eventually I will want to move over to a Resmed ASV if at all possible, even if that's an out of pocket cost. But I'm just glad to FINALLY be getting the therapy I need.

The doctor wants me to run two nights without the oxygen, and then they can decide if I need to include oxygen as well or not. depending on what my sats look like.

I am far too nervous about this, really. I mean, what's the worst that can happen... it doesn't work and I'm no better off than I am now, right?
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#36
RE: Newbie: Severe CSA, OSCAR help request.
That is VERY good news!!   I hope it will provide the therapy you require.
Sleep-well
Crimson Nape
Apnea Board Moderator
www.ApneaBoard.com
___________________________________
Useful Links -or- When All Else Fails:
The Guide to Understanding OSCAR
OSCAR Chart Organization
Attaching Images and Files on Apnea Board
Apnea Helpful Tips

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#37
RE: Newbie: Severe CSA, OSCAR help request.
Ratchick,
Great news, hopefully a step in the right direction.  Smile
OpalRose
Apnea Board Administrator
www.apneaboard.com

_______________________
OSCAR Chart Organization
How to Attach Images and Files.
OSCAR - The Guide
Soft Cervical Collar
Optimizing therapy
OSCAR supported machines
Mask Primer



INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE.  ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA.  INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#38
RE: Newbie: Severe CSA, OSCAR help request.
Thanks, Red. Me too. Smile
Edit: And thanks Opal. Smile
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#39
RE: Newbie: Severe CSA, OSCAR help request.
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<---- Look at that...

Excuse me for a moment while I freak out in happiness...

THEY GOT ME A BRAND NEW RESMED ASV!

I am SO freaking happy right now, I can't even begin to tell you guys. I was SO convinced they were going to give me a brick, like the ones on the ward. I have NEVER been happier to be wrong.

Dancing Way-to-happy Banana

Right... off to bed. Fingers crossed, everyone!

(I'm using the card it came with tonight... presumably, I need to remove my Resmed APAP data off my FlashAir before I start using it for the ASV data.)
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#40
RE: Newbie: Severe CSA, OSCAR help request.
We're sorry to have sent the wrong box. Your ASV is made by VeggieMeister, ASV in this case is Automatic Slicer VeggieMeiseter. Coffee

Hope it works well. Let us know how it did.
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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