Deleted

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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Madalot
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Re: Deleted

Post by Madalot » Sat Mar 13, 2010 12:05 pm

-SWS wrote:
Muffy wrote:Further, if it is the latter (which apparently it is), then the suggestion of using ASV as proposed by another poster who shall remain nameless Banned would be totally inappropriate as the less than 100% target keeps getting smaller and smaller as the hypoventilation persists.
I think that's a caveat for short-sighted servo ventilation machines without "volume assurance" (hence the AVAPS acronym for that latter machine). The designed purpose of the "volume assurance" value/number programmed by clinicians is to prevent that diminishing-target scenario you just described. Volume targeting will never be lower than that assurance number programmed by the clinician.

That said, I agree that volume ventilation (not AVAPS) is the best modality for more severe respiratory failure (as opposed to less severe hypoventilation that is commonly associated with neuromuscular disease, severe obesity, etc.). Any way you slice it AVAPS immediately and primarily targets pressure, hoping to hit that minimally-assured secondary volume target. And AVAPS can take quite a few breaths to get the patient back on volume target as well.

_________________________________________________________________________________________________________________

Madalot, I'm sure you recall our proposing that we use your learning curve toward knowing how to help others in a similar situation. You seemed amenable to that idea at the time---or at least didn't object.

Well, this is the discussion we need toward knowing how to help others in a similar situation... You just might continue finding information of use in these unfolding discussions as well. At least that is my hope.
Ah, family obligations have forced me BACK to my desk and thus the computer again. No rest for the weary today.

If my situation helps just one person get better treatment or care for themselves, it will be worth it. Absolutely, positively. And these banterings back and forth are just fine -- until the bantering turns to telling me that I must do this or must do that, or even more importantly, saying things that make me question my medical team's ability and their handling of my case. Questioning is okay, but not some of the things that have been said. For example, you don't need this, you should have this and there's no way that's possible, or you don't qualify for that expensive "toy" -- these types of comments aren't helpful to anybody and detract from the purpose that so many seem to have for my threads/situation.

Weary, weary, weary --

_________________
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Additional Comments: Trilogy EVO. S/T AVAPS, IPAP 18-23, EPAP 10, BPM 7

-SWS
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Re: Deleted

Post by -SWS » Sat Mar 13, 2010 12:30 pm

Madalot wrote:Questioning is okay, but not some of the things that have been said. For example, you don't need this, you should have this and there's no way that's possible, or you don't qualify for that expensive "toy" -- these types of comments aren't helpful to anybody and detract from the purpose that so many seem to have for my threads/situation.

Weary, weary, weary --
Well, the main purpose of this thread should be for you. That you find typical message board dynamics both objectionable and tiring is very understandable for anyone in your situation IMHO.

My best wishes for you and the others discussing this thread. At this point my official purpose for your threads is to silently read along. Good luck!

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Banned
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Re: Deleted

Post by Banned » Sat Mar 13, 2010 12:41 pm

Madalot wrote:me, my RT, my husband AND the owner of the DME have confirmed, to my doctor's satisfaction, that my breathing is too shallow to trip the bipap machines (any of them) and thus required a switch to something else.
Your breathing woud never be too shallow to trip a BiPAP ASV device, hence my swan song on ASV therapy. If there is hypoventilation syndrome, then as Muffy said, ASV may not be appropriate.

Banned
Last edited by Banned on Sat Mar 13, 2010 3:32 pm, edited 1 time in total.
AVAPS: PC AVAPS, EPAP 15, IPAP Min 19, IPAP Max 25, Vt 520ml, BPM 10, Ti 1.8sec, RT 2 (Garage)
BiPAP Auto SV: EPAP 9, IPAP Min 14, IPAP Max 25, BPM 10, Ti 2sec, RT 2 (Travel Machine)
VPAP Adapt SV: EEP 10.4, Min PS 4.4 (Every Day)
Mask: Quattro

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Madalot
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Re: Deleted

Post by Madalot » Sat Mar 13, 2010 12:45 pm

-SWS wrote:
Madalot wrote:Questioning is okay, but not some of the things that have been said. For example, you don't need this, you should have this and there's no way that's possible, or you don't qualify for that expensive "toy" -- these types of comments aren't helpful to anybody and detract from the purpose that so many seem to have for my threads/situation.

Weary, weary, weary --
Well, the main purpose of this thread should be for you. That you find typical message board dynamics both objectionable and tiring is very understandable for anyone in your situation IMHO.

My best wishes for you and the others discussing this thread. At this point my official purpose for your threads is to silently read along. Good luck!
SWS -- this is your choice and I will respect it. But it's not what I'm asking one to do. You want to ask me questions, ask me questions. What I'm asking for is not to be bullied or abused when I can't answer a question to someone's expectations. I'm asking to be treated with respect and not like a child who needs to be told exactly how to act and behave.

And I've explained way more than I feel I should have to under the circumstances.

But if you'd rather just read and not offer any input, that's okay. I've never asked anyone here to solve my problems. I've never demanded anything from anybody here. I've posted, vented and asked for input and suggestions. If somehow that equates to my being obligated to provide specific information, and be okay with very forceful comments that both undermine and belittle me and my situation, well that's kind of news to me. If it's typical dynamics of message boards -- that sure doesn't say much for them or the people that participate, does it?

Sorry, but I'm getting a little testy today with all of this. As I've said, I'm tired and don't feel well. I never feel good, but the last couple weeks have been even worse. But what's the saddest of all of it, the machine and my breathing problems may have absolutely nothing to do with why I feel like crap right now.

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Muffy
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Re: Deleted

Post by Muffy » Sat Mar 13, 2010 1:07 pm

Banned wrote:
Muffy wrote:I think once a thread picks up a head of steam and treatment by committee starts, that's exactly the impression one might get.
Do you have any thoughts on why Madalot's medical team put her on AVAPS other than patient presents with obesity, MS, and low O2 sats? Would these 3 observations necessarily require a volume solution?

Banned
It's apparently "MD" and not "MS", and while I have certainly have a number of thoughts, since things are pretty calm right now, I think I'm going to join -SWS in the back seat and do what I said I was going to do (and in retrospect, obviously should have done):
Muffy wrote:
Madalot wrote:So, we're not as concerned about the numbers game right now (other than oxygen levels) as we are about trying to get me stabilized and breathing better while I sleep.
Then in regards to where
in the other thread Madalot wrote:But if you have any suggestions for questions I should ask, please lay them on me!
all my suggestions for questions were related to "the numbers game", so I guess I'll just sit here and shut up (hard as that may be to believe).

Muffy
Muffy
________________________________

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Madalot
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Re: Deleted

Post by Madalot » Sat Mar 13, 2010 1:10 pm

Muffy wrote:
BlackSpinner wrote:Because nearly every where in life, if there is one person asking a question then there are at least ten others waiting for the answer who are afraid to ask or who don't know how to ask.
And what makes this case so interesting is that if the major underlying entity is SDB, then it needs a pressure approach, but if it is a respiratory failure problem, then a volume-oriented attack would probably have more benefit, making this a great study case.

Further, if it is the latter (which apparently it is), then the suggestion of using ASV as proposed by another poster who shall remain nameless Banned would be totally inappropriate as the less than 100% target keeps getting smaller and smaller as the hypoventilation persists.

Muffy
Well, I pulled my post because Muffy has bowed out too. Thanks anyway. I'll bow out now completely too and perhaps post when we get everything all figured out or have someone post when I'm dead.

Thanks everyone for the input and support and even to those that tried to help. It's a shame you can't help within the boundaries of a person's comfort zone, but it is what it is.

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Mask: FlexiFit HC431 Full Face CPAP Mask with Headgear
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Additional Comments: Trilogy EVO. S/T AVAPS, IPAP 18-23, EPAP 10, BPM 7

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Banned
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Re: Deleted

Post by Banned » Sat Mar 13, 2010 1:28 pm

Well, before you all vanish to the powder room I suggest that Madalot switch from AVAPS ST mode to AVAPS PC mode, as I had recommended earlier.

AVAPS PC mode functions exactly the same as AVAPS ST, except that all breathes are device generated. Realistically, AVAPS PC mode will function in response to both spontaneous and device generated breaths, but all breathes are still device generated.

AVAPS PC mode may help mitigate Madalot's non breathing issues.

Banned
Last edited by Banned on Sat Mar 13, 2010 3:34 pm, edited 1 time in total.
AVAPS: PC AVAPS, EPAP 15, IPAP Min 19, IPAP Max 25, Vt 520ml, BPM 10, Ti 1.8sec, RT 2 (Garage)
BiPAP Auto SV: EPAP 9, IPAP Min 14, IPAP Max 25, BPM 10, Ti 2sec, RT 2 (Travel Machine)
VPAP Adapt SV: EEP 10.4, Min PS 4.4 (Every Day)
Mask: Quattro

-SWS
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Re: Deleted

Post by -SWS » Sat Mar 13, 2010 2:10 pm

Banned wrote:Well, before you all vanish to the powder room I suggest that Madalot switch from AVAPS ST mode to AVAPS PC mode, as I had recommended earlier.
I think her case is far too complicated for message-board derived settings. If you don't mind I'll reword that suggestion to something like: "Madalot, please consider asking your medical team if AVAPS PC or timed modes might be advantageous when inspiratory volume is too low to trigger the machine."
Madalot wrote: But it's not what I'm asking one to do.
I understood that perfectly, Madalot. I'm currently coping with trigeminal-neuralgia pain and sleep deprivation of my own right now.
Madalot wrote:You want to ask me questions, ask me questions.
Madalot wrote:It's a shame you can't help within the boundaries of a person's comfort zone, but it is what it is.
If you'd like to ask me any questions or solicit opinions feel free to do so via PM.

Again, good luck!

P.S. I truly hope your threads turn into PRIMARILY kind offers of encouragement and moral support---as well as very specific answers to your questions rather than new treatment plans.

DreamOn
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Re: Deleted

Post by DreamOn » Sat Mar 13, 2010 2:48 pm

Madalot, you need to do what's right for YOU. And if that means not posting here, I certainly understand your decision. I would be interested in updates in the future if you do feel comfortable with that. As others have pointed out, the information you have shared will no doubt help others. I have learned so much from you myself -- not just as a "case study" but about how to deal with life's challenges with dignity and courage. I admire your strength and determination to carry on.

What I do hope is that you will take some of the suggestions and information learned from those here who are very knowledgeable. There's no need to act on anything right now. Hold what they have said about tests, machines, settings, etc., in the back of your mind for another time. I think it will help that you have read those recommendations and if/when it is appropriate to discuss those specific things with your doctor, you will have a headstart in getting to where you need to be.

For now, I hope that you can put all thoughts of this aside and enjoy life. Bring your friends and family closer as you make the best of a difficult situation. I wish you everything good, now and in the future. Although we don't know each other, I will never forget you. You have a beautiful spirit.

Sincerely,

DreamOn

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Banned
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Re: Deleted

Post by Banned » Sat Mar 13, 2010 3:10 pm

-SWS wrote:"Madalot, please consider asking your medical team if AVAPS PC or timed modes might be advantageous when inspiratory volume is too low to trigger the machine."
Isn't that what I said?

Banned
AVAPS: PC AVAPS, EPAP 15, IPAP Min 19, IPAP Max 25, Vt 520ml, BPM 10, Ti 1.8sec, RT 2 (Garage)
BiPAP Auto SV: EPAP 9, IPAP Min 14, IPAP Max 25, BPM 10, Ti 2sec, RT 2 (Travel Machine)
VPAP Adapt SV: EEP 10.4, Min PS 4.4 (Every Day)
Mask: Quattro

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diboja
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Re: Deleted

Post by diboja » Sat Mar 13, 2010 3:59 pm

Sure wish this thread had a Pause Button:

Image

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LinkC
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Re: Deleted

Post by LinkC » Sat Mar 13, 2010 4:41 pm

diboja wrote:Sure wish this thread had a Pause Button:
Or "Rewind" perhaps! Looks like I missed a doozy...

(At least it wasn't ME at the center of the tornado...THIS time! )

But more to the point: I didn't see anything grossly out of line here. But with so many posts "Deleted" I'm only seeing one side.
The advice given here is--at the very least--worth every penny it costs! Mostly much more...

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ifrimmel
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Re: Deleted

Post by ifrimmel » Sat Mar 13, 2010 5:42 pm

Welcome to the internet everyone. I see both sides. Both are valid. Can a mod lock this - we aren't going to go anywhere with this.

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Last edited by ifrimmel on Sat Mar 13, 2010 5:45 pm, edited 1 time in total.

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ifrimmel
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Re: Deleted

Post by ifrimmel » Sat Mar 13, 2010 5:43 pm

diboja wrote:Sure wish this thread had a Pause Button:

Image

Ditto.

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Banned
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Re: Deleted

Post by Banned » Sat Mar 13, 2010 5:45 pm

This thread is locked.

Mod
AVAPS: PC AVAPS, EPAP 15, IPAP Min 19, IPAP Max 25, Vt 520ml, BPM 10, Ti 1.8sec, RT 2 (Garage)
BiPAP Auto SV: EPAP 9, IPAP Min 14, IPAP Max 25, BPM 10, Ti 2sec, RT 2 (Travel Machine)
VPAP Adapt SV: EEP 10.4, Min PS 4.4 (Every Day)
Mask: Quattro