Congestive Heart Failure and xPap Therapy

[Kiralynx]

A painful set of emotional conflicts 'duty' vs 'rational observation & action'. KiralynX am sure many of us are praying for & with you that you make some progress here.

Take it as a positive that your dad said to bring the machine.

Good luck & lets trust the prayers will help.

Doug,

No arguments there. Prayers always help. What I'm praying for is that whatever is best for my mom is what will be -- even if it's not what I want to have happen.

[Kiralynx]

Sorry for getting to this late. Please ignore my offlist email - hadn't read this yet.

Having just gone through this with my Dad you have all my deepest sympathies. I know what a struggle it is to convince your parents that you do indeed know something about medicine that maybe they don't. It's hard to be 44 in the mirror and 6 to them.

Best wishes for all and HUGS ALL AROUND,

Barbara,

Well, I just replied to the offline mail, so... <g>

It's even tougher to be in your 50s, and still about 4!

I know... you've just been there, and nothing will make it easier. Thanks for the good thoughts!

[Muffy]

Apparently, Medicare and Medicaid won't pay for the d@mned oxygen unless the SPO2 reading is low. We'll skip over the fact that by the time she got home (without oxygen), she was slurring her words, and was not rational last night. Whereas she was not slurring (much) in hospital, and was reasonably lucid. This, combined with the breathing pattern I observed, suggests very strongly to me that Mom has sleep disordered breathing.

Well, although the oxygen reimbursement criteria are a bit involved, the area that may be pertinent to you would seem to be

Group II criteria include the presence of (a) an arterial PO2 of 56-59 mm Hg or an arterial blood oxygen saturation of 89 percent at rest (awake), during sleep for at least 5 minutes, or during exercise (as described under Group I criteria) and (b) any of the following:

Dependent edema suggesting congestive heart failure
Pulmonary hypertension or cor pulmonale, determined by measurement of pulmonary artery pressure, gated blood pool scan, echocardiogram, or "P" pulmonale on EKG (P wave greater than 3 mm in standard leads II, III, or AVF)
Erythrocythemia with a hematocrit greater than 56 percent.

so at this time, overnight oximetry may be the way to go, and, because of the reimbursement issues, "official" monitoring and downloads at that.

Arbitrary use of ASV may not be appropriate when you really don't know what you're ASV-ing. Depending on exactly what is occurring, therapy might be:

1. Supplemental oxygen, either nocturnal use only, 24 hours a day, and/or as needed for shortness of breath.
2. Bilevel support with or without backup for respiratory failure, as determined by an arterial blood gas while stable.
3. CPAP is there's evidence of OSA (or, there's plenty of documentation for CPAP benefit in CSA.).
4. Contrary to popular belief, if Cheyne-Stokes Respiration is present, the primary attack is NOT ASV, it's "go back to your physician and get cardiac performance under better control".
5. ASV.
6. Some sort of PAP with supplemental oxygen.

NOX may go a long way in helping to determine what is actually occurring.

Muffy

[Muffy]

KiralynX

Have been thinking about your predicament. It is very frustrating to be dealing with 'professionals' who assure you all is going the only way it can when you know that is just not quite correct.

I fear that in parts of our professions the volume of patients means that not everyone gets the best treatment or attention.

You can sit & watch your mother's breathing problem. You know what is happening.
A cpap is merely just an air pump. An ASV adds some sophistication that looks for CS patterns & when detected tries to 'normalize' the breathing (that is - maintain a steady tidal volume). Both ASVs and Timed Bilevels include monitoring the breathing rate & will apply ipap/epap cycling to maintain a minimum rate.

None of these machines would do to your mother anything worse than her being left as is. At least an ASV will try to normalize & the settings needed are not complicated. If there were nothing wrong with your mother's breathing, the ASV would not do anything more than act like a bilevel. As you previously mentioned, you saw them normalize her breathing with one in the hospital.

I will be thinking of you & am sure you will know what action you need to take even if it is getting angry with her doctor

DSM

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?

If this person's blood pressure and cardiac performance are marginal, application of PAP could send her right down the tubes. Which makes the statement

None of these machines would do to your mother anything worse than her being left as is.

miles beyond ignorant.

Have a Muffy Day!

Muffy

[Kiralynx]

Well, although the oxygen reimbursement criteria are a bit involved, the area that may be pertinent to you would seem to be

Group II criteria include the presence of (a) an arterial PO2 of 56-59 mm Hg or an arterial blood oxygen saturation of 89 percent at rest (awake), during sleep for at least 5 minutes, or during exercise (as described under Group I criteria) and (b) any of the following:

Dependent edema suggesting congestive heart failure
Pulmonary hypertension or cor pulmonale, determined by measurement of pulmonary artery pressure, gated blood pool scan, echocardiogram, or "P" pulmonale on EKG (P wave greater than 3 mm in standard leads II, III, or AVF)
Erythrocythemia with a hematocrit greater than 56 percent.

so at this time, overnight oximetry may be the way to go, and, because of the reimbursement issues, "official" monitoring and downloads at that.

Muffy,

Thank you for the criteria. <sigh> I understand the need for objective criteria, and cannot really disagree with it, but it's so frustrating to have one's observations brushed off because it's not something in the medical practitioner's current lexicon.

Last night was more of the erratic breathing, and waking, and when she'd wake, she'd start crying and screaming. She would settle down when I touched her and held her hand, then she would nod off again, and we'd repeat the cycle -- about every 15-30 minutes, if that indicates anything.

Arbitrary use of ASV may not be appropriate when you really don't know what you're ASV-ing. Depending on exactly what is occurring, therapy might be:

1. Supplemental oxygen, either nocturnal use only, 24 hours a day, and/or as needed for shortness of breath.
2. Bilevel support with or without backup for respiratory failure, as determined by an arterial blood gas while stable.
3. CPAP is there's evidence of OSA (or, there's plenty of documentation for CPAP benefit in CSA.).
4. Contrary to popular belief, if Cheyne-Stokes Respiration is present, the primary attack is NOT ASV, it's "go back to your physician and get cardiac performance under better control".
5. ASV.
6. Some sort of PAP with supplemental oxygen.

NOX may go a long way in helping to determine what is actually occurring.

Thanks for the SAG-acious observations here. You notice that although I have the ASV, I'm not rushing to slap it on her, even though I personally think it might help. I'm not a doctor, not a cardiologist, and not a respiratory specialist. And while it is one thing for people already under prescribed therapy to tweak that therapy, it is another to initiate a therapy with insufficient data on all the parameters.

I don't know enough about exactly how the ASV works and what its settings indicate. I think I have an understanding of the ordinary Bipap at this point, but I have been continuing to read, trying to understand the ASV. I was going to start a thread last Monday about it, and rather got distracted.

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.

[Muffy]

Right, NOX is a nocturnal oximetry download. I believe it's information will be invaluable at this point. If the whole baseline is down, then supplemental oxygen may be the way to go. If there are desaturations (oxygen saturation drops, but they only last about 20-30 seconds) then SDB may be underfoot. A sharp eye can sometimes differentiate central events from obstructive events on the oximetry download.

There may also be both (hence, the possibility of PAP with supplemental oxygen).

ASV was designed to fix CSR, however, I think by the time ASV hit the market with force, drug treatment for heart failure improved such that CSR is much less common now. Or, put another way, one should be sure to tune up cardiac performance and fluid balance before dragging out the ASV.

If cooperation is an issue, then the application of supplemental oxygen (and once chronic CHF folk lie flat for awhile, the sat could really dip as fluid shifts) might be a little more tolerable.

Speaking of which, if you aren't doing this already, sitting up an angle should help to relieve some of the symptoms of CHF, if present.

Muffy

[Restlessdave]

My Dad died a couple of years ago from end stage heart failure after surviving a heart attack just after he retired. Knowing what I know now I am sure he was a sleep apnea sufferer with all the classic signs later in his life. I so wish I could turn back time and even if CPAP could'nt prevent his heart attack I am sure it would have helped in the 10 years or so after when he struggled to sleep and became an awful burden on my Mum.

When I was getting my CPAP machine yesterday the salesman at the DMU was talking to my wife who snores gently and was wondering if she had sleep apnea too although I havent heard her stop breathing or struggling to breath. He told her he had a portable machine which would attach to her chest which from what he was saying would do a mini sleep study. It sounded like it would do oxitremy (sorry cant spell) etc. He told her she could take it home to check herself if she was worried about it. I don't know if there was a charge or what kind of report it produces but if your local DMU had one maybe the evidence would help when you talk to the Doctors. Hospital Nurses by the way are Gods angels on earth as anyone who has had to stay in hospital knows.

Will pray for your Mum, You and your family and I know you are going to continue to do all you can to help your Mum have peace in her life in her remaining years.

[Kiralynx]

Right, NOX is a nocturnal oximetry download. I believe it's information will be invaluable at this point. If the whole baseline is down, then supplemental oxygen may be the way to go. If there are desaturations (oxygen saturation drops, but they only last about 20-30 seconds) then SDB may be underfoot. A sharp eye can sometimes differentiate central events from obstructive events on the oximetry download.

There may also be both (hence, the possibility of PAP with supplemental oxygen).

ASV was designed to fix CSR, however, I think by the time ASV hit the market with force, drug treatment for heart failure improved such that CSR is much less common now. Or, put another way, one should be sure to tune up cardiac performance and fluid balance before dragging out the ASV.

If cooperation is an issue, then the application of supplemental oxygen (and once chronic CHF folk lie flat for awhile, the sat could really dip as fluid shifts) might be a little more tolerable.

Speaking of which, if you aren't doing this already, sitting up an angle should help to relieve some of the symptoms of CHF, if present.

Muffy,

Mom is already sitting.sleeping in a La-Z-Boy chair, and she is mostly propped up at night. I know she's on an assortment of medications, including a diuretic for the edema issues. Also cholesterol meds (which is why I pushed the CoQ10 at her, among other things) and blood pressure meds.

What I'm trying to sort out, in my own head, at least, so that I can, perhaps, present a coherent, and not "Oh, but I read this on the Net..." to her doctor is whether or not ASV in addition to the drug therapies she is currently on might be of benefit.

I'll ask my Dad when her next appointment with her cardiologist is, and if that is too far off, I'll call her primary care physician and request the overnight pulse oximeter. She hates having things on her hands, so maybe they can use one which clips on her ear, or something.

They've put an oximeter on her multiple times for a few minutes while she's sitting up and alert, and announce that her SPO2 isn't under 90, so she's fine. But I see a distinct difference in her lucidity in on/off oxygen. (I believe they were giving her three liters in hospital.

Also, the main reason I thought of potentially using the ASV is because they used a Bipap STD set at 5 and 10 on her in the emergency room to stabilize her breathing. And while it was on her, she was sleeping like a rock. When they removed it, she woke within about 15 minutes, and then went into the cycle of erratic breathing which I've reported earlier.

Oh, yes... they've also started her on some Ambien to help with what may be Sundown Syndrome.

Thanks for your input.

[-SWS]

Or, put another way, one should be sure to tune up cardiac performance and fluid balance before dragging out the ASV.

Highlighted for emphasis.

Stabilization before applying ASV is what I also came up with after performing a cursory search, Kiralynx. Of course, SAG/Muffy didn't need to perform a search since he is trained in this area. Rather, I needed to perform the search.

But my understanding is that stabilizing biochemical fluid balance such as electrolytes is often an essential first step. Also, that racking cough often represents a different kind of fluid problem associated with CHF: pulmonary edema. Normalizing or eliminating "wet lungs" in turn helps to stabilize chemoreceptor plant-gain problems in your mother's cardiopulmonary feedback loop. The idea is to first stabilize using standard CHF stabilization treatment methods. Then, consider bringing in ASV, which is not a standard treatment method for that initial albeit crucial stabilization phase.

None of these machines would do to your mother anything worse than her being left as is.

My only rational objection to this comment, is that it presents two non-standard treatment alternatives: 1) either apply ASV, or 2) let the situation stand "as is".

I think SAG/Muffy successfully pointed out that other treatment methods are first used to stabilize a CHF patient. Then, getting out the ASV under the right set of circumstances truly is the right thing to do in my opinion as well. But my understanding is that the "art of medicine" also needs to enter the doctor's own decision loop---just as the "science of medicine" must factor in. Your mother's cognitive/emotional makeup even needs to be factored in. Again, those kinds of factors are where the "art of medicine" comes in to play. Will your mother be willing or reluctant to undergo ASV treatment by the way of a potentially uncomfortable pressurized mask? And your mother's doctor needs to consider the outcome of that situation even more when your mother is not sedated or under unusually heavy neurological pressure or drive to fall asleep.

If the doctor views that treatment method as a potential stress-inducing physiologic or even psychological burden, then other treatment methods may understandably win out in the short term. Again, those kinds of "art of medicine" decisions necessarily go hand-in-hand with a myriad of critical "science of medicine" decisions. The long story short, is the doctor really needs to "quarterback" the shots in a critical health-care scenario like this. That means the most important thing you can do is make sure that you have an excellent, well-trained quarterback in the cardiopulmonary game. A good doctor will explain options so that the patient and/or family members can help make crucial decisions.

With that said, if that was my own mother, I would also want a sleep study performed---just as soon as the cardiologist gave the go-ahead. But first, I would find a cardiologist or even pulmonologist sleep doctor who was very adept at working with the ASV. Not so much to make sure that my mother ended up with an ASV machine because of any message-board discussions---but rather to make sure that if an ASV truly was the best course of treatment, that we'd have her lined up with a great doctor who would know how to play out all the good options. Bear in mind that many doctors are not well-versed in ASV treatment. It's still considered a somewhat "novel treatment method". I would probably call Resmed and Respirinonics, hoping to get some referrals of ASV-knowledgeable doctors in my area.

Good luck, Kiralynx! Positive vibes going your way and especially your mother's!

[Kiralynx]

SWS,

Thanks for your input on this! I'll answer more fully tomorrow morning after I've had a chance to think about it. MY brain isn't firing on all cylinders just now, and I'm having to make sure I get adequate sleep to prevent the hip pain issues. (Great barometer: hips hurt? I need more quality time with my Bipap!)

My Dad called and said I should stay home tonight, that he'd just soldier through, and I told him NO. I would be there. He said he hated to impose, and that I had a life.... I told him it was preventive maintenance, because I didn't need HIM in a hospital bed next to her! He still protested that he didn't like to ask me... and I told him that he wasn't asking me. I was telling him that I would be there to take care of Mom and see that he got a decent night's sleep every night until he's gotten someone to come in at night and do so. He allowed as how I was awful stubborn, and I said, "Yup, and I have my father to thank for that!"

So, gotta get my bags packed and get on over there. All positive thoughts gratefully accepted!

[Kiralynx]

Hospital Nurses by the way are Gods angels on earth as anyone who has had to stay in hospital knows.

Will pray for your Mum, You and your family and I know you are going to continue to do all you can to help your Mum have peace in her life in her remaining years.

Dave,

Good luck as you start your own PAP journey -- the people here in this Forum are angels, too, even if some have devilish tempers!

I agree with you about hospital nurses... which reminds me that I really must get to the bakery tomorrow and get those treats for the good folk who took care of Mom. I've observed that Good Food is never out of order for incredibly busy health care professionals.

All prayers are gratefully accepted. Right now, I'm praying for what's best for Mom.

[dsm]

KiralynX

Have been thinking about your predicament. It is very frustrating to be dealing with 'professionals' who assure you all is going the only way it can when you know that is just not quite correct.

I fear that in parts of our professions the volume of patients means that not everyone gets the best treatment or attention.

You can sit & watch your mother's breathing problem. You know what is happening.
A cpap is merely just an air pump. An ASV adds some sophistication that looks for CS patterns & when detected tries to 'normalize' the breathing (that is - maintain a steady tidal volume). Both ASVs and Timed Bilevels include monitoring the breathing rate & will apply ipap/epap cycling to maintain a minimum rate.

None of these machines would do to your mother anything worse than her being left as is. At least an ASV will try to normalize & the settings needed are not complicated. If there were nothing wrong with your mother's breathing, the ASV would not do anything more than act like a bilevel. As you previously mentioned, you saw them normalize her breathing with one in the hospital.

I will be thinking of you & am sure you will know what action you need to take even if it is getting angry with her doctor

DSM

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?

If this person's blood pressure and cardiac performance are marginal, application of PAP could send her right down the tubes. Which makes the statement

None of these machines would do to your mother anything worse than her being left as is.

miles beyond ignorant.

Have a Muffy Day!

Muffy

Muffy

Thanks for the kind remarks. A lot of what is being said here is in support & being empathetic. Sure a good focused doctor could do wonders for KiralynX's mother but if you read all her posts she fears that is not happening.

Now if you read her post where her mother was placed on a machine in order to normalize her breathing, you will have read that the doc only left her on it for a short period & once off her breathing went erratic again. So the talk was really about what KiralynX could do if able to do anything, when apparently not able to get the doctors involved to take notice. Actually taking action on what we are 'chatting' about is another matter & certainly worthy of 'here are some good reasons not to do that" (rather than stepping in with a a metaphorical punch in the face to someone exploring that line). So for KiralynX,
using her spare ASV, if set up correctly (and KiralynX had a chance to see saw what those settings were), then it was a reasonable line of thinking & 'chatting' about.

Your decisions to inject insults & offensive remarks into this otherwise supportive thread says little for your contribution and your grasp of the predicament we are empathizing with. We don't need a ham-fisted in-your-face king-kong approach to the 'chatter' you chose to disagree with no matter how justified you feel. If you disagree or think the point made was 'outrageous', just point out politely (this is KiralynX's thread), your concerns, if you can't be polite - just go away.

Can we get back to supporting KiralynX - thanks

DSM

#2 MUFFY, I just realized from SWS's post that you are actually SAG. So was this was your classic & typical best bedside manner or merely an angry/vindictive person using someone else's thread to do a bit of 'payback' ?. SAG please just calm down, take 10 deep breaths & lets move on. I am sure KiralynX's mother would greatly benefit from your very extensive expertise. Are you willing to call her doctor & offer some input ? - perhaps steer the doctor down the right path ?. You have the credentials to achieve a very positive result but perhaps the inhibitor is your manner ? - I really doubt that text talk here other than soothing KiralynX is going to alter the situation on site. I once gain feel very sorry for you and hope you get some help for your peculiar if not bizarre ability for establishing your 'moral authority' with foul mouthed epitaphs to your reputation, while commenting on therapy matters in a thread that was really about empathizing. Always be kind enough to warn us plebs when you want to switch the theme to theory & professional advice. Then we can better step into your context with a little more warning (if we choose to).

D

[SaltLakeJan]

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

[lktnky]

Thoughts and prayers are with you, Kiralynx.
Would that we ALL had you as an advocate for our health issues.
We all see what a blessing you have been and continue to be to your parents. I know they are grateful for your help even though they may not be able to verbalize it and would, in truth, be lost without it.
Keep your own strength up as you share it with your precious Family.
All the best,
LKTNKY

[jnk]

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

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