Congestive Heart Failure and xPap Therapy

[dsm]

SWS

Point taken. But, taken from another perspective, I would bet that fish bones kill many multitudes more people than ventilators but, do we see doctorial writing on avoiding the toxic effects of eating fish. Is the fish bone the problem or the way it is used or is it just a case of bad luck in the victim's life ?.

Almost anything can be argued to be toxic but nearly always in a context (as in the report you quoted). Some of the simplest things (toy beads) can be devastating killers. The degree of toxicity of a ventilator in any idiots hands is going to be no worse that a fishbone in any idiots windpipe.

DSM

[Kiralynx]

How old is mom? Assuming your mother is near end of life, and has lived well, your only job as her child is to make sure she is comfortable (Doctors can't and won't always do that). That includes letting her know of any tools you may have in that regard. So, you done good by getting the extra ASV. Probably the last thing she needs is a sleep-study. Tell your mom (if she is not demented) that you can put an ASV next to her strato-lounger, if she would like. If she says, "Hell no", than forget it, you offered. If she says, "I'll try it , dear", set it up! Trial her at the lowest possible settings and ask her how it feels. Show her how to turn it on. Tell her it's there if she thinks she needs some air, then put the nasal mask on, and switch the unit on. ASV therapy is better than O2 any-day of the week, including Mondays'. Whoever tells you that letting your mom suck some wind on an ASV at its lowest setting will give her a heart attack is nuts. Why is she not in an assisted living situation or nursing home?

Banned,

My mother is almost 87 -- and the reason she is not in a nursing home or assisted living is because my father, who is almost 85, is still with us, and has been strongly reluctant to place her under such care. Up until just after Christmas, she was still ambulatory, and still in possession of her full faculties.

Mom once expressed a terror of being stuck in a home, and abandoned, and my Dad made the unwise promise that he would never do that to her. As a consequence, he is now trying to take care of her by himself, and is being a stubborn German about getting help, even something like having someone to sit with her at night while he gets an uninterrupted night's sleep.

I choose to proceed very cautiously on this because although they did have her on a Bipap STD, which, I believe, is the commercial version of the AST as part of the stabilization process in the emergency room, and although I know what the pressure settings were, I do not know what other parameters they may have had set on it. Moreover, the did take it off her within a few hours, and I do not yet know the medical reasons the professionals may have had for doing so.

<rueful grin> The mask, as always, would be the fly in the ointment, even if a cardiologist or pulmonologist did prescribe the ASV for Mom.... the straps would mess up her hair! Plus, having observed her breathing patterns for the last ten days, she's a mouth breather. No way she would ever tape, or wear my brandy keg, so it would have to be a full-face mask.

[Kiralynx]

It's like I always said, Never use a ventilator without consulting your doctor!

Banned,

The trick is finding a doctor who is knowledgeable enough to properly prescribe it!

[Guest]

Although I've been diagnosed and take medication for A-Fib and my ASV has not killed me, yet.

Are there any documented cases of death by ASV?

I'd still tell this girl to tell mama she has its available if she would like it.

Banned

[-SWS]

SWS

Point taken. But, taken from another perspective, I would bet that fish bones kill many multitudes more people than ventilators but, do we see doctorial writing on avoiding the toxic effects of eating fish. Is the fish bone the problem or the way it is used or is it just a case of bad luck in the victim's life ?.

Almost anything can be argued to be toxic but nearly always in a context (as in the report you quoted). Some of the simplest things (toy beads) can be devastating killers. The degree of toxicity of a ventilator in any idiots hands is going to be no worse that a fishbone in any idiots windpipe.

DSM

You'll notice how many of those listed contraindications cover specific types of cardiac instabilities. And you'll also note no one bothered to remotely screen in this thread for those highly specific cardiac issues before suggesting "benign ventilator" cardiac treatment----without proper medical supervision.

Well, reading that confirms my gut-feeling that I must move cautiously on this!

Truly one very smart and wise cookie IMHO. I think that shows through in all your threads. Your mother's extremely lucky to have you looking after her health, Kiralynx.

[Kiralynx]

A ventilator is a benign device that is not the problem & is *rarely* going to cause the problem (very) & is not a toxic addition to the problem.

Well, I'll have to politely disagree with you there. I think the contraindications listed above very clearly show that these machines can be far from "benign devices" in the hands of an idiot.

And I also think the seminal work by Gilmartin, Geoffrey S; Daly, Robert W; Thomas, Robert J, explains what they call "pressure toxicity" to occur in approximately 15% of the SDB patient population---as opposed to that statistic you just published with the the numeric quantity of "*rarely*".

Given that, as I have noted elsewhere, my mother and I share many physical traits, and given that I have CSDB which is a low percentage of the total population, and given that if it's possible to have an anomalous reaction to, say, a medication, my Mom will have that reaction, it's studies like the one you cited which are cause for caution on my part.

[dsm]

<snip>

You'll notice how many of those listed contraindications cover specific types of cardiac instabilities. And you'll also note no one bothered to remotely screen in this thread for those highly specific cardiac issues before suggesting "benign ventilator" cardiac treatment----without proper medical supervision.

<snip>

SWS

There is a hypothetical here and that is what someone might do if there is no one to provide that expert medical advice / intervention. But because part of what I have agreed to do is to stick with the broader interests of who reads these discussions, lets not persue it here.

And yes, Kiralyn has been very fortunate to see all the words of wisdom posted here and is satisfied she has a much clearer picture of the pros & cons and what course of action she can and will take.

DSM

[Kiralynx]

Well, reading that confirms my gut-feeling that I must move cautiously on this!

Truly one very smart and wise cookie IMHO. I think that shows through in all your threads. Your mother's extremely lucky to have you looking after her health, Kiralynx.

<Wry grin> Yes. As I've observed, my mother and I share many physical traits... a few years ago, I was telling her that I really wished she would have kept her allergies and her hips and knees to herself!

Well, now I get to find out if i can out-stubborn my very stubborn German Dad who is determined to soldier on.

I do want more information (hence this thread), and I do want to talk to Mom's doctors about my concerns. We have observed in other threads in this Forum how few physicians, even cardiologists, appear to be aware of the fact that treating the SDB can assist in reducing the deterioration of a heart condition.

Which brings me to one question which arose: I asked about doing a sleep study on Mom while she was in the hospital. The physician attending her felt that a study done while Mom was just recovering from the congestive heart failure would not be a valid study. (Of course, this is the same doctor who prescribed Ambien for her inability to sleep at night, and I have learned from a pharmacist friend that Ambien can be strongly contraindicated in persons with my Mom's mental situation, which may include Sundowning Syndrome. http://www.healthcentral.com/caregiver/ ... 674-5.html is one of many articles on the subject. Just wish I'd learned about Ambien being contraindicated before we went through three nights of Mom having hallucinations and hysteria.)

Would you, or Muffy, know about how Mom's heart situation might affect the validity of a sleep study? And how, given the concerns about xPap or ASV and her heart issues, one might go about doing a titration, for goodness sake?

[Muffy]

Would you, or Muffy, know about how Mom's heart situation might affect the validity of a sleep study? And how, given the concerns about xPap or ASV and her heart issues, one might go about doing a titration, for goodness sake?

Well, I would say that if she can't keep an oximeter probe on for any length of time, then the other 16 or so assorted electrodes, belts and sensors wouldn't stand much of a chance.

If her sleep quality is clearly horrible, which is what you describe, then the microanalysis of sleep per se wouldn't really offer any helpful information. Your observations of her sleep tell you pretty much everything you need to know.

However, there's plenty of data that can be obtained without full-channel NPSG. I'm telling ya, NOX would reveal TONS! And this could be a great case where portable testing (limited channel testing) could be VERY beneficial. But only if she'll wear the stuff.

Muffy

[Kiralynx]

Well, I would say that if she can't keep an oximeter probe on for any length of time, then the other 16 or so assorted electrodes, belts and sensors wouldn't stand much of a chance.

If her sleep quality is clearly horrible, which is what you describe, then the micranalysis of sleep per se wouldn't really offer any helpful information. Your description of her sleep tells you pretty much everything you need to know.

However, there's plenty of data that can be obtained without full-channel NPSG. I'm telling ya, NOX would reveal TONS! And this could be a great case where portable testing (limited channel testing) would be VERY beneficial. But only if she will wear the stuff.

Muffy,

Actually, she was OK with the taped oximeter in the hospital -- she just has a problem with the probe on my CMS-50F, which I will acknowledge is a bit bulky if you have small hands. I may call SE Medical tomorrow and see if there is a smaller probe which can go to that oximeter which I can use.) She was also OK with all the wires they had attached to her body in the hospital. We might have a trifle of a hassle with the leads on her head. (And one of us would absolutely have to stay with her all night, or she'd panic.)

In fact, that's why I was pushing for the sleep study while she was in the hospital.... she was two-thirds wired for it already!

I'm also going to continue to push for a formal NOX on her. And try to get an informal one on her as a basis for the formal one. Because if that shows what you and I both think it will show, then that could be the springboard for the full-channel NPSG -- or not, as seems reasonable. My Dad did have a valid point in that Mom hates sleeping in strange places, and that with as sick as she is right now, will the data we obtain from the sleep study be of sufficient benefit to warrant the stress it will put on her?

The NOX, though... If in fact, the NOX shows the desaturations and some of the other things you have mentioned (and which I am spacing at the moment), then, while xPap therapy might be good, I believe there are other therapeutic measures which might be taken to improve sleep architecture and thus health, if it develops she's not in physical condition to tolerate xPap or ASV. At the very least, we might get her some night-time oxygen, since that that point, she'd meet the criteria posted earlier in this thread.

[ozij]

Kira,
I hope you can get a comfortable pulse oximeter through your doctors. In case you don't: the probe on the SPO 7500 looks far more comfortable.



O.

[Kiralynx]

I hope you can get a comfortable pulse oximeter through your doctors. In case you don't: the probe on the SPO 7500 looks far more comfortable.

Ozij,

I hope so, too... or that I can get a probe for the CMS-50F which will be more acceptable to my Mom. The SPO 7500 was one I looked at, but that the time I was looking, it was double the price of the CMS-50F. It took me a little while to adjust to the probe, but it's dealable. Trouble is, Mom's mental situation makes her impatient of almost anything new.

I think I'm desperately impatient with the need to move slowly on this, with the fact that so many physicians are so uninformed about apnea and its co-morbidities... because Mom was still fully capable mentally, and was not bed-ridden three to six months ago. I refuse to rush into this, but it makes me so very angry that Mom (and I!) could have been spared years of pain, and Mom's "golden years" could have been made so much more productive. (Not that they have been unproductive, mind! I used to have them over for a home cooked meal once a week, but we had to stop that because they had so many meetings and activities that they were going to that they didn't even slow down for home cooking!)

Health care providers are desperately in need of education!

[bobkat13]

Kira, I'm too much of a "nooooob" to have any meaninful advice for you. And I didn't even read this thread at first because I didn't know anything about CHF. But the number of replies got me to open it finally. So that's my only excuse for being late to the party.....

I'm so sorry to hear about your mother - well, actually your parents. I went through something similar in 2002 when I was helping my Dad die at home from bile duct cancer. He didn't give me credit for having anything intelligent to contribute to the discussions of his care until quite close to the end, when he told the hospice nurse "Please listen to my daughter, she has a lot of sense." So I know quite well the feeling of always being six and missing a couple of front teeth in your parent's eyes!

I wish you courage and wisdom in your fight for your mother and father's health. Whether they ever tell you so or not, you're the daughter every parent longs for.....

[Kiralynx]

I wish you courage and wisdom in your fight for your mother and father's health. Whether they ever tell you so or not, you're the daughter every parent longs for.....

Bobkat,

I ran across a line, "There is none so old she cannot learn, and none so young he cannot teach," from Marion Zimmer Bradley's Darkover series.

I'm a relative newcomer to this board myself... six months with my Beastie yesterday! But I have seen long-term members acknowledge what they've learned from newcomers, and newcomers with some really brilliant ideas. The wonderful thing about a board like this is the opportunity to learn and teach. So never put yourself down as "just as noobie."

Many thanks for the good wishes and thoughts. That kind of strength from friends everywhere is a Godsend.

[-SWS]

Sigh. How DOES one find an integrative doctor like this?

I think my next step will be to put in a call for my respiratory therapist, the one who recommended the ASV for me in the first place, and see if she knows of any physicians who may be knowledgeable in this complex area.

Well, one approach is to perform that search in the "target trenches" of the healthcare battlefield so to speak. You want a good cardiologist or pulmonologist----one who treats CHF patients with ASV when/if that particular treatment method happens to be appropriate. If there are doctors in your immediate area who fit that bill, then they're going to be performing their ASV work at your local sleep labs.

So you might call or even visit sleep labs in your local area, as if you were a "field investigator" on behalf of your mother's health. So put on your socially lucrative and most congenial mannerisms as you fish for crucial CHF treatment answers for dear mom.

I'd suggest that you not explicitly ask if they happen to have a cardiologist or pulmonologist who knows how to work with ASV. Heaven forbid that you should stumble across a cash-cow business who will tell you want you want to hear---only to get dear mom in the door so they can bill handsomely as they do things in their own set mediocre ways. Rather, I'd ask each sleep lab if they happen to get a lot of CHF patients. And if they do, I'd ask just what kinds of therapies or treatment methods they typically end up with. Then I'd ask them exactly how many cardiologist or pulmonologist sleep docs are diagnosing and treating those CHF patients----and which one(s) they candidly think are really good with out-of-the-ordinary CHF challenges. Because:

Given that, as I have noted elsewhere, my mother and I share many physical traits, and given that I have CSDB which is a low percentage of the total population, and given that if it's possible to have an anomalous reaction to, say, a medication, my Mom will have that reaction, it's studies like the one you cited which are cause for caution on my part.

Your mother just may be a somewhat out-of-the-ordinary CHF patient as you adeptly pointed out. And don't forget to ask those forthcoming labs, who very honestly say they don't treat many CHF patients, if they happen to have recommendations for good CHF doctors and labs in your area.

http://www.sleepcenters.org/
Good luck finding mom a great integrative doctor. Again, she's extremely lucky to have you!