Congestive Heart Failure and xPap Therapy

[Kiralynx]

I can't provide any better advice hear, but I just wanted to tell you that I'm putting out the good vibes for your mom.

Thanks, all good vibes gratefully accepted.

[boston]

I cant offer any advice, but you and your family are in my prayers.

[Ruby Vee]

I'm so sorry about what you're going through with your mother! Been there, done that and Dad died a few months ago. I suspect that HIS undiagnosed sleep apnea contributed to both his hypertension and his stroke.

As a critical care nurse, I can tell you that sleep apnea is poorly understood by the majority of health care professionals. Until I had my own sleep study, I didn't understand that hospitalized patients should bring their XPAP to the hospital with them and expect to USE it whenever they sleep. CPAP to me was something we did with the ventilator in order to wean people off and take the breathing tube out. Now I'm finding that sometimes I WANT to shake some of the doctors I work with -- and some of the patients. I had a patient today with a primary diagnosis of cardiomyopathy and heart failure and a secondary diagnosis of sleep apnea. I asked him if he brought his xPAP to the hospital. "Oh, no," he said. "I don't use it. They told me I had sleep apnea, but they're wrong. I don't have it." This is a man whose heart is now doing about 20% of the work it should be doing and will be getting a transplant -- if he's lucky. The doctors weren't much better. "He says he doesn't have it," says one. "So he doesn't need CPAP."

I think you'd have a better time convincing your Mom's doctor to order a sleep study -- when she's better -- by saying "I think Mom sometimes stops breathing when she's sleeping and I wonder if that could be contributing to her heart failure." Some doctors abhor the idea that a family member might Google something useful. I don't know of any sleep studies done as inpatients in the hospital, although we certainly have oximetry.

[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

[Kiralynx]

I cant offer any advice, but you and your family are in my prayers.

All prayers are truly, and sincerely accepted.

[Kiralynx]

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

Doug,

Thanks for the thoughts... my Dad is one of the ones who needs to be convinced of the machine, and that will take the doctors' concurrence to using an ASV on a regular basis. After all, I'm just his little girl!

I may see if I can go with them to her cardiologist appointment which she will probably have next week. And truly, I prefer NOT to get angry. I will if I have to, but it's sooo much more pleasant not to have the headache afterwards!

[dsm]

KiralynX

Yes real anger is stressful & shortens our lives

I just hope you don't get forced to sit & watch your mother fade away knowing that ignorance is aiding & hastening the journey.
And, isn't it irritating that at our age we can still be just someone 'little girl' or 'little boy' because that is how our parents have
locked us into their perspectives.

The good thing is you have lots of support & understanding here.

DSM

[Kiralynx]

I'm so sorry about what you're going through with your mother! Been there, done that and Dad died a few months ago. I suspect that HIS undiagnosed sleep apnea contributed to both his hypertension and his stroke.

As a critical care nurse, I can tell you that sleep apnea is poorly understood by the majority of health care professionals. Until I had my own sleep study, I didn't understand that hospitalized patients should bring their XPAP to the hospital with them and expect to USE it whenever they sleep. CPAP to me was something we did with the ventilator in order to wean people off and take the breathing tube out. Now I'm finding that sometimes I WANT to shake some of the doctors I work with -- and some of the patients. I had a patient today with a primary diagnosis of cardiomyopathy and heart failure and a secondary diagnosis of sleep apnea. I asked him if he brought his xPAP to the hospital. "Oh, no," he said. "I don't use it. They told me I had sleep apnea, but they're wrong. I don't have it." This is a man whose heart is now doing about 20% of the work it should be doing and will be getting a transplant -- if he's lucky. The doctors weren't much better. "He says he doesn't have it," says one. "So he doesn't need CPAP."

I think you'd have a better time convincing your Mom's doctor to order a sleep study -- when she's better -- by saying "I think Mom sometimes stops breathing when she's sleeping and I wonder if that could be contributing to her heart failure." Some doctors abhor the idea that a family member might Google something useful. I don't know of any sleep studies done as inpatients in the hospital, although we certainly have oximetry.

Ruby,

Nurses are wonderful people! My mom had some very good ones this stay. I think I'm going to drop by the bakery tomorrow and take some goodies up to both shifts. Too many people don't think to offer an extra thank you!

I'm truly sorry to hear about your Dad -- one of the things I don't want to have happen is him falling over from the stress of caring for Mom.

You raise some really good points.I know I ran into the non-concern about use of the Bipap over my colonoscopy.

I wasn't planning on presenting the doctors with the studies -- I wanted them for my Dad, and for my own education. And so I can plan my presentation. "I assume you're familiar with the use of ASV as support in CHF.... I became aware of it because the same algorithms are used for complex sleep apnea, which I was diagnosed with six months ago."

The fact that I have this ASV, and it will literally cost nothing except the time to set the machine up makes it worth a trial.

I did have to chuckle, though. I wanted some baselines on myself (dozing, sitting up in a chair) so I took my recording pulse oximeter and put it on after Mom had settled down for the night. All of the nurses noticed it when they came in, and all of them were curious. (Probably wondering if I was likely to fall over on them!) I just said that I was doing baseline oximeter studies because of my complex sleep apnea. Two of them thought they might like to get oximeters like mine for use with their private patients, and one said she might get one for her husband, because she hadn't been able to persuade to go for a sleep study. I appreciated the observational abilities of those nurses very much.

We'll see -- all I can do is educate myself as fully as possible and present the information.

[Kiralynx]

Yes real anger is stressful & shortens our lives

That it does.

I just hope you don't get forced to sit & watch your mother fade away knowing that ignorance is aiding & hastening the journey.

That makes two of us -- I've done what I could from a nutritional stand point, with CoQ10, and taking over freshly cooked food.

And, isn't it irritating that at our age we can still be just someone 'little girl' or 'little boy' because that is how our parents have locked us into their perspectives.

Annoying, yes. But that's the way of the world.

The good thing is you have lots of support & understanding here.

Yes -- and learning. So I can pass on what I learn to others. So that maybe someone else's Mom or Dad won't have to dwindle away because of lack of knowledge about sleep disordered breathing.

[ozij]

Kira,
Why not put your own oximeter on your mom for the night, tell the doc you noticed her weird breathing, got curious, used the oximeter you have for yourself, and got the following results?

I think you'd have a better time convincing your Mom's doctor to order a sleep study -- when she's better -- by saying "I think Mom sometimes stops breathing when she's sleeping and I wonder if that could be contributing to her heart failure." Some doctors abhor the idea that a family member might Google something useful. I don't know of any sleep studies done as inpatients in the hospital, although we certainly have oximetry.

O.

[Kiralynx]

Why not put your own oximeter on your mom for the night, tell the doc you noticed her weird breathing, got curious, used the oximeter you have for yourself, and got the following results?

Ozij,

In point of fact, I had gone over to do just that. (Trying to persuade her to leave it on is a problem.) My oximeter was on her her finger when the heart attack started. I looked at the data after I got home. Her SPO2 dropped like a brick, and her heart rate went through the roof.

[Pad A Cheek]

Kiralynx,
I am sorry that your family is having to deal with this. I know it is extremely stressful for you all. I am thankful that your parents have such a supportive and knowledgeable daughter to help them. The nurses and doctors may well learn a better way to help because you are there to share with them about your concerns. Your education on the subject of sleep disordered breathing and conjestive heart failure may very well change their outlook on treating not only your mother, but other patients in the future.
You are doing a great deal of good.

You and your family are in my prayers. I do hope your mom improves quickly and your dad will get the help he needs so his health does not suffer as well. You take care of yourself too, we are rooting for you.

Karen

[Kiralynx]

I am sorry that your family is having to deal with this. I know it is extremely stressful for you all. I am thankful that your parents have such a supportive and knowledgeable daughter to help them. The nurses and doctors may well learn a better way to help because you are there to share with them about your concerns. Your education on the subject of sleep disordered breathing and conjestive heart failure may very well change their outlook on treating not only your mother, but other patients in the future.
You are doing a great deal of good.

Karen,

I hope that it may change the outlook of some health care providers. I'm very frustrated today because Mom was pretty lucid while on oxygen at the hospital, but they insist her (waking) SPO2 is normal, so therefore, she doesn't have breathing issues and doesn't need oxygen.

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.

You and your family are in my prayers. I do hope your mom improves quickly and your dad will get the help he needs so his health does not suffer as well. You take care of yourself too, we are rooting for you.

I got 12 hours sleep with my mask last night. But Dad got almost no sleep last night, so I am going over about 10p tonight, and will sit with her, and send Dad up to get some uninterrupted sleep.

Dad said I should bring my machine over. I may take the spare one... my husband said I should set it to the hospital settings and put it on Mom. I'm torn. I think it would help, but hate to do something without Dad's okay -- and he's unlikely to do that without a doctor's okay.

All prayers are gratefully accepted.

[dsm]

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

[Babette]

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