Congestive Heart Failure and xPap Therapy

SaltLakeJan wrote:Oh Kira,

I'm so sorry you are back in the hospital routine again with your Mom. I went through it with my Mother, and it ain't fun. But, I'm not surprised you are instructing the nurses about the oximiter. Trust you, never miss an opportunity. My prayers for you, your Mom and Dad, and again for you. You will need all your strength, do what you can to take care of yourself.

Jan,

Well, my hips are telling me that I'm not getting enough quality time with my Bipap, but last night was significantly better than her first three nights home from the hospital. If it's possible to have an anomalous reaction to a drug, my Mom will have it -- and so she did with the Ambien they put her on to "help" her sleep. Hallucinations and hysteria up the wazoo. Dad and I decided not to give her any last night, and it was much quieter. I took notes on her breathing and behavior...

Mom's nurses were top mark. So were the emergency doctors... I just wish I could find someone willing to be integrative on multiple disciplines.

I suppose Dad and I should have planned this kind of care when Mom started getting frailer, but honestly! Sending a bed-ridden woman home with no care in place except her 84 year old husband, is, in my opinion, tantamount to elder abuse.

I'm re-honing my skills as a speedy cook, which originated in the early months after Hurricane Katrina, and couldn't count on having power for more than 20-30 minutes. Easy 20 minute meals, like the bison florentine I plan to fix tonight.

And I am getting at least six hours of sleep, although I sure can't keep that up for long. My Dad tried to persuade me to let him go back to 24/7 care of Mom, and I told him that I would stop coming over when he had someone to sit with Mom. And pointed out that it was self-preservation... because if he kept going the way he was before Mom's latest hospitalization, he'll be in a bed next to her, and then we would be up a creek! Call it black mail -- he might not hire someone to get himself some relief, but he will hire someone for me!

jnk wrote:http://books.google.com/books?id=vLZnB_ ... #PPA530,M1

Differentiation between short-term application and long-term application of PAP, on p. 531.

Thank you -- a very useful reference! Just wish I could find an ASV knowledgeable doctor!

Thanks for the good thoughts and prayers... all positive energies gratefully accepted.

Kiralynx wrote:
<snip>

My understanding is that the algorithms in the ASV were originally developed for congestive heart failure. Is this correct? Oversimplification? Or is this a case of "insufficient information to ask the right questions"? (After all, if you ask the wrong questions, you are not going to get the correct answer for what you thought you were asking. You will get the answer to the question you asked.)

I'm tired enough right now, even with about 7 hours on my ASV, that I'm not parsing the abbreviation NOX. Pulse oximeter? I am pushing for an official one with official downloads.

Apologies if my typokinesis and homonymitis has run rampant in this.

KiralynX,

The ASV 'algorithms' are actually not super complicated. I regard an advanced Auto as being more complex. My own confidence in the ASV (esp the one you have) is how flexible it is & if I were in a situation like yours, I would have the confidence (along with measurements such as SpO2) do do something even if it was to prove that cautious replication of what was applied in hospital, helped calm my mother. I would never advocate action outside a doctors advice unless it was clear that help was not available.

Muffy-SAG means well with his detailed advice but it only means something if you can follow through and have the support to see it followed through. I am reading that this is not quite the case. Anyway, I am not at all saying go and slap on the ASV without a good plan.

How the ASV works is this ...

1) It basically operates as a bilevel delivering 2 pressures - that is easy for most of us to follow. It does have an extra setting of a third pressure called Ipap Max that Ipap can be lifted too if needed ...
2) It has a timed mode and sensors to track breathing rate & peak volume (that is, the bipap SV) so if the tracked BPM drops below a back up rate (or a tracked rate) it will activate the epap to ipap to epap cycling at the back up rate BUT, as distinct from a timed bilevel, the ASV has a trick up its sleeve, as it cycles it is able to keep bumping up the ipap pressure (2-3 CMs per breath for max 3 breaths) which means that if the sleeper hasn't resumed 90% of the peak tidal flow it was tracking, it keeps upping the pressure (maxes out after 10 CMs) as that is pretty certain to get the sleepers lungs working again within 3 breaths. Then the ASV will very very quickly lower the ipap pressure once the target flow is back on track.

What I just described in 2 above is the waning side of the CSR cycle and or a Central (which usually follows the waning phase). It is safe to say though, that this approach actually pre-empts a central / reduced flow & under most typical circumstances breathing remains to within 70-90% of the prior tidal flow because the machine can detect a looming missed target within 1 breath and boost ipap upward as much as 3 CMs in the one breath.

3) If the sleeper starts to hyper-ventilate (waxing phase of CSR), then the Bipap SV will resume the initial epap & ipapmin settings (it drops the ipap to the minimum gap set between epap & ipap) and (IIRC) will slow the epap/ipap cycle. Other brands such as the Vpap Adapt SV & the Sommnovent CR appear to have additional ways of controlling the waxing phase of CSR.

There is no hidden 'magic' in the ASV box. It is in its simplest form a bilevel with some fairly straight forward extras that allow it to normalize or smooth out the fluctuations in tidal flow that are obvious in a CSR patient. It does look for and recognize the 'patterns'. The ASV does not perform magic of voodoo on the user (Muffy take note!), it just helps smooth out the users breathing. The critical factors are setting the right epap, then the right epap to ipapmin gap & also being cautious with the ipapmax setting that it is not too high for the patient it is applied to. ASV are not a dangerous drug and using them is not a black art even if some would have us believe it is.

God bless & hang in there

DSM

#2 PS on the issue of Oxygen, if you can't get this attended to via the medical system, I would lean towards measuring your mother's spo2 with your probe & printing the data . Remember it can be taken from the toes as well as the fingers & a big toe can sometimes be less of a hassle. If it were my mother & I had no other avenue I could see to get help. I would use the ASV with cautious settings (similar to what they used in the hospital) & ipapmax set 9 over ipapmin, & then compare the SpO2 readings when being ventilated. If her SpO2 shows desats without ventilation but is ok with ventilation then you would have a very meaningful answer.

(To muffy, if the above comment induces a compulsion to swear please just PM it to me & spare the other readers/posters).

D

Doug,

Thanks for the detailed commentary. I understand the basics of a regular bipap, and I'm beginning to understand the additional component of the ASV's tri-level pressures. Still, the ASV has so MANY settings, and because I don't yet understand the whats and wherefores of them, I don't want to fiddle with them.

Mom is somewhat better today -- part of her disorientation was apparently an adverse reaction to the Ambien she was prescribed.

I have requested from Respironics a list of physicians who may be expert in the use of the ASV in conjunction with more conventional pharmacologic treatments for congestive heart failure.

Your thought about the oximeter on the toe is a good one... I'll see if I can implement it.

I'm proceeding carefully on this because there are so many factors that I don't have full information on. If it was myself, I might say, "D@mn the torpedoes...." but it isn't.

Kiralynx wrote:Doug,

Thanks for the detailed commentary. I understand the basics of a regular bipap, and I'm beginning to understand the additional component of the ASV's tri-level pressures. Still, the ASV has so MANY settings, and because I don't yet understand the whats and wherefores of them, I don't want to fiddle with them.

Mom is somewhat better today -- part of her disorientation was apparently an adverse reaction to the Ambien she was prescribed.

I have requested from Respironics a list of physicians who may be expert in the use of the ASV in conjunction with more conventional pharmacologic treatments for congestive heart failure.

Your thought about the oximeter on the toe is a good one... I'll see if I can implement it.

I'm proceeding carefully on this because there are so many factors that I don't have full information on. If it was myself, I might say, "D@mn the torpedoes...." but it isn't.

KiralynX,

A wise approach. It is good to explore the possibilities & to have a chance to weigh up options and then apply your own good counsel.
I do realize that I have done lots of experimenting over 4 years and have used some of the simplest as well as most sophisticated of
these home cpap devices and they have lost all traces of black magic for me. I recall when I 1st posted pics of the insides of my machines
how many members did say that their cpaps did lose some mystique once they could see there was just a blower fan, a motor & some
electronics. I think some of us do like that element of the machine performing some mystical magic as it works.

Doug

Cardiology---the 21st century thinking man's hobby.

Look inside a few machines, snap a few pictures, treat a heart!

-SWS wrote:Cardiology---the 21st century thinking man's hobby.

Look inside a few machines, snap a few pictures, treat a heart!

I don't think so - this is a discussion forum.
Discussion is one thing always tempered by what real world action anyone takes.

To claim one is the other is warping it to say the least. Let alone distorting the context out of shape.
Are you advocating we never contemplate such ideas. I won't argue with you saying 'that may not be
a good idea for this reason'. Your statement really smacks of "don't dare even think of such things!".

DSM

Kiralynx wrote:I'm proceeding carefully on this because there are so many factors that I don't have full information on. If it was myself, I might say, "D@mn the torpedoes...." but it isn't.

You're doing right to be careful, Kira. You're doing right to continue working with your mother's doctors rather than pay any attention at all to dsm's incessant blather about machines he has very little real understanding about, beyond the way he believes particular machines have treated him in what he likes to call his "experiments" and his "research."

A screwdriver and a camera do not a machine expert make. Nor does techie babble about machines a doctor make.

I doubt that he has the least idea what could happen if a person as critically ill as your mother is were "experimented" on at home with an ASV (or any kind of xpap) machine.

This statement appalls me:

dsm wrote:I would use the ASV with cautious settings (similar to what they used in the hospital) & ipapmax set 9 over ipapmin, & then compare the SpO2 readings when being ventilated. If her SpO2 shows desats without ventilation but is ok with ventilation then you would have a very meaningful answer.

At home. No medical supervision. Guessing at settings. Using a machine that is not like the one she was on briefly in the hospital.

What an experiment that could be.

I can certainly understand SAG/Muffy's exasperated reactions to so many dsm posts.

dsm wrote:I would use the ASV with cautious settings (similar to what they used in the hospital) & ipapmax set 9 over ipapmin, & then compare the SpO2 readings when being ventilated. If her SpO2 shows desats without ventilation but is ok with ventilation then you would have a very meaningful answer.

Muffy wrote:If you have NFI what you're talking about, could you at least pick one day out of the week where you're not an asshole?

OK, I guess it ain't gonna be Mondays.

oxoxox

Muffy

Muffy wrote:

dsm wrote:I would use the ASV with cautious settings (similar to what they used in the hospital) & ipapmax set 9 over ipapmin, & then compare the SpO2 readings when being ventilated. If her SpO2 shows desats without ventilation but is ok with ventilation then you would have a very meaningful answer.

Muffy wrote:If you have NFI what you're talking about, could you at least pick one day out of the week where you're not an asshole?

OK, I guess it ain't gonna be Mondays.

oxoxox

Muffy

You just won't learn.

Reasoned debate will always allow people to come to their own conclusions. Just because someone debates a different line that you disagree with is NO reason to sling abuse or attack the person. You use your intelligence to provide a better argument THEN let the readers work it out for themselves.

NO one is going to take KiralynX's ASV and put it on her mother! Not Kiralyn, not me & not you ! - we talked about the possibilities & KiralynX has had a lot of points put to her - she has stated that she has decided that the words of caution are the path she will walk down and that was because of the 'helpful' points you and other made not the abuse you keep repeating.

KiralynX was the one who suggested using the ASV, I stepped in with points as to how I might use it in such circumstances, others made an argument for not using it. So let the debate stand. The action is another matter.

What is your problem with debating points you don't agree with. Action is an entirely different matter.
Cheers

DSM

rested gal wrote:

Kiralynx wrote:I'm proceeding carefully on this because there are so many factors that I don't have full information on. If it was myself, I might say, "D@mn the torpedoes...." but it isn't.

You're doing right to be careful, Kira. You're doing right to continue working with your mother's doctors rather than pay any attention at all to dsm's incessant blather about machines he has very little real understanding about, beyond the way he believes particular machines have treated him in what he likes to call his "experiments" and his "research."

A screwdriver and a camera do not a machine expert make. Nor does techie babble about machines a doctor make.

I doubt that he has the least idea what could happen if a person as critically ill as your mother is were "experimented" on at home with an ASV (or any kind of xpap) machine.

This statement appalls me:

dsm wrote:I would use the ASV with cautious settings (similar to what they used in the hospital) & ipapmax set 9 over ipapmin, & then compare the SpO2 readings when being ventilated. If her SpO2 shows desats without ventilation but is ok with ventilation then you would have a very meaningful answer.

At home. No medical supervision. Guessing at settings. Using a machine that is not like the one she was on briefly in the hospital.

What an experiment that could be.

I can certainly understand SAG/Muffy's exasperated reactions to so many dsm posts.

RG

KiralynX has clearly spelled out what path she will follow. Your added cheerleader role changing anything. All POvs are worth looking at & let the reader chose their path. Strangling debate is a poor tactic. Making pointless remarks like ' a screwdriver does not a doctor make' is a bit pathetic. Where on earth did that come from and what justified it. Is this a forum ?.

DSM

dsm wrote:

-SWS wrote:Cardiology---the 21st century thinking man's hobby.

Look inside a few machines, snap a few pictures, treat a heart!

I don't think so - this is a discussion forum.
Discussion is one thing always tempered by what real world action anyone takes.

To claim one is the other is warping it to say the least. Let alone distorting the context out of shape.
Are you advocating we never contemplate such ideas. I won't argue with you saying 'that may not be
a good idea for this reason'. Your statement really smacks of "don't dare even think of such things!".

DSM

I'm all for thought, discussion, and theory. But fortunately, having authored that statement, I have the inside track of what that statement REALLY smacked of: "Your camera-and-screwdriver analysis seems to have neglected a vast number of considerations in the "other" mystery box: namely that of diseased and frail cardiology itself."

But if we're going to take wild guesses of what other posters' messages smack of, I'll take a guess about what your posts in this thread smack of: "Pick me! Pick me! Here are the specific settings that I would try with your mother's diseased and frail cardiology!"

After downing a few screwdrivers, I would be very careful with any camera.

DSM, I have always enjoyed your enthusiasm for these machines, and I have learned from you. But I think you may need to trust the judgment of other experienced posters here about your need to be careful what you post, even when, in your mind, your statements are merely hypothetical points for debate.

This board touches on medical matters of life and death, and making sure no one gets hurt, including lurkers, is more important in my opinion, than making sure anyone's feelings don't get hurt. So I would suggest that you try not to view the statements made here in response to your post as being personal attacks that you need to defend against. File them under "attempts to protect the board from someone who may be unintentionally misleading to others." You are welcome to post. But others are welcome to discredit posts, and should do so vigorously when they see the need to do so. As I understand it, that's how forums work.

I don't condone name-calling or cursing (that's my personal stance), but I agree wholeheartedly, in principle, with raising the pointedness of the rhetoric when it comes to discrediting statements, and posters, who may do damage, however unintentionally they may be doing it. Including me. We all need help from others at times in recognizing our own limitations. That doesn't make us worthless. It just helps to point us in other directions where our input may be more useful. I would appreciate any well-meaning guidance from others for me along those lines, and I hope you welcome it in your case as well.

Then again, what I just said may be nothing more that my misguided viewpoint. If so, please consider it simply my point for reasoned debate that others may disagree with and concerning which others may have to come to their own conclusions.

dsm wrote:I think some of us do like that element of the machine performing some mystical magic as it works.

Doug,

Arthur C. Clarke observed that any sufficiently advanced technology is indistinguishable from magic.

FYI, while your suggestion of the oximeter on the toe was a good one, it didn't work. <wry grin> My Mom's a grade-A Houdini.