Liquids

[AfibApnea]

I have always heard/been told/been encouraged to DRINK LIQUIDS (primarily water).
Hasn’t everyone!!!

For the last year (since being diagnosed with afib, then car accident, then sleep apnea) I’ve been on CPAP. Since then, (thanks to this forum; esp Pugsy) I’ve learned how to read the CPAP output. Nonetheless, when I’ve gone to get the advice of the sleep department RT (Respiratory Therapists) their response to my readings has been that in general I’m doing fine with a couple horrible-night exceptions (nothing to worry about) every month.

Imagine my surprise when last week (after two weeks of unusually/consistently bad sleep/CPAP experiences—due, I’m certain, to an afib-related drug change) I get to have an appointment with the Sleep Department’s pulmonologist and sleep apnea expert…who looks at exactly the same CPAP data and (disregarding those two anomalous weeks…) comes to the conclusion that:
- I’m going downhill and have been doing so since getting on CPAP a year ago.
- I must have “CPAP emergent central apnea” which will require I switch to a BIPAP A$V machine.
- I likely have congestive heart failure.

The positive thing that comes out of this encounter is that I am ‘approved’ a sleep study. (I’ve been wanting this for the last year.)

The surprising things are:
- prescribes me a diuretic
- instructs me to drink less than 2 liters liquid/day
(It is important to note that I have very low blood pressure (so much so it significantly affects which drugs I can take for afib).)

Has anyone encountered an instruction to drink less liquids daily (along with a diuretic)?
Under what conditions is this normal?

[Julie]

It's very normal - congestive failure means you have too much water where it doesn't belong and need to get rid of it. It's not the same dynamic as a young, otherwise fit person who's active and needs to keep well hydrated to stay healthy. And btw, they've recently done studies to show the old stuff about 8 glasses a day (no matter what, no matter who you are) is not necessarily necessary... depends on other factors too.

[turbosnore]

Also, what's your pressure - the actual pressure?
Pressure above 10 cm water are known to trigger centrals on some people. I guess the triggering pressure is personal.
That's why ResMed (at least upto S8) Autoset algorithm doesn't raise the pressure over 10 cm water in case of apneas.
Only hypopneas get the pressure to raise then.

Maybe lowering the pressure a little might help until you get BiPAP.

[kteague]

With the study you can begin the process of discovering if you have treatment emergent centrals and how they need handled. Is this a diagnostic study or with a machine?

I'm wondering what was done diagnostically to determine IF you have congestive heart failure. Do you have edema that makes them think that? I mean, are you having centrals from your treatment or from having CHF? I am admittedly not real informed on this, just wondering if this is an either/or situation or both/and.

[space45]

for the ones that suffer from leg cramps at nights, I have been told that it could mean your not drinking enough water. seems to work for my wife, she would wake up with leg cramps at night, she is drinking more water and it has not happened for awhile now. hope it stays that way.

[old dude]

OP, is your AFIB under control?

And does the CHF only show up when your AFIB is active? If so, that's pretty much par for the course and isn't the same as CHF caused by other things. Fix the AFIB like with an ablation and the CHF goes away, if that's what's causing it. It's pretty much impossible not to have CHF when you're in an AFIB or A-Flutter episode.

[jencat824]

AfibApnea,

As far as the CHF is concerned, I'm getting educated on this as well. My BIL has CHF, along with COPD, Emphysema & non-treated OSA. Yes, you read that right, he is resistant to using a CPAP machine. He can be really stubborn, but is coming around due to a recent accident (he set himself on fire smoking while on oxygen & forgot to remove the oxygen) really long story. I'm hoping to get him to try CPAP again. He was non-compliant with taking his diuretics, after the accident (which the hospitalization removed 53 pounds of fluid), he is now taking his diuretics. I could explain all night, but suffice it to say I'm becoming more educated on this since he has decided he wants to try to live.

With CHF, as Julie explained, the body is retaining water, due to the body's inability to flush those fluids off, the heart is not pumping enough fluid off the keep up with the intake. They told you to limit your water intake probably to allow the diuretics time to 'catch up' with flushing that excess from your body. The reduced fluid intake could or could not be permanent. I'm working with Bryan to hopefully help him understand to reduce his intake. We are using the 2 liter bottle method. If you drink something, then measure the same amount of fluid and put that in an empty 2 liter bottle. When the bottle is full, you are done drinking for the day. Using the bottle method will help you learn how much you are drinking and you will in time no longer need to measure. I learned this trick when my MIL began dialysis a couple of years ago.

Another question you will need to ask is how long is your fluid restriction going to last - is it permanent, or temporary. Sometimes a really reduced amount is temporary until you get the amount of fluid in your body back to an acceptable level. Sometimes it is permanent, meaning this is the amount you will consume every day until further notice. Since you know what they want you to consume, its a great way to learn how much you actually drink vs. how much you should be drinking. With CHF, too much fluid can actually have you drowning in your own fluids if your body cannot relieve itself of the excess.

Also, its important to take the diuretics at the times prescribed. May sound counterproductive to take it at 6am & 6pm, especially since later in the evening makes you go at night, but the timing is usually geared to keep the stress on the heart at a consistent level during the day. Also, keeps stress on the kidneys managed as well. Its best to remember the use of diuretics for CHF is very different than someone who is taking diuretics for high blood pressure. Which brings the next question, do you have a BP monitoring device? If not, I would get one & take your BP at regular intervals of say 2 hours, then 4 hours, then 6 hours after the diuretics. These drugs are often used to lower BP, so in your case its important to watch that BP to make sure it doesn't drop too much. If it does, contact your Dr. immediately & follow his instructions to the letter.

Now I have probably just given you way too much info, but I've recently become educated on how CHF works for my BIL by asking lots of questions & following up by reading as much as possible on the internet from reliable resources. The main thing to remember is CHF is manageable, just takes some work to do it right, then you will get the hang of it. Since you are CPAP compliant and have learned to read your data to manage your therapy, the CHF management will be very doable for you. My problem is getting my BIL to follow directions. You are motivated to take care of your health, so although measuring what you drink will be something of a pain in the a$$ at first, you will probably get the hang of it very quickly.

If you have any questions that I might be able to help with, don't hesitate to PM me. I must say I'm not an expert, just a traveler down this road at this time with a family member. It helps to know someone who is also going down this road. Your Dr. is the best person to ask the hard questions, but since I belong to a very unhealthy family (that sounds kind of weird, but its true), and I'm the primary caregiver for most of the family, I've learned a few tricks that might help.

Hang in there, its going to be OK.
Jen

[AfibApnea]

$%&*#&%#^ I had/have "Notify me when a reply is posted" activated and got no emails indicating activity on this subject.
(I also had it on the other post and have been getting notices)
How do I start getting notifications?

I just completed a long reply to each person (going back and forth between browser tabs) and lost it!!!!!!!!!!!!!!!!!!!

I'll start again............

[AfibApnea]

Congestive Heart Failure

Julie: I’m surprised to hear that about not drinking water. Know anything more about ‘recent studies’? (I’ve personally thought that the reason I got the afib in the first place was years of not drinking enough water. What to my dad was the “Drink of the Angels” was to his children…not.)

Kteague: The whole CFM thing was a surprise to me. For one thing it came from a pulmonologist and not a cardiologist. (Note: I am grateful to the pulmonologist for finally scheduling me for a sleep study, something I'd tried to get for a year.)
And:
- I’d just (three weeks prior) undergone a (treadmill) stress test and was told I’d passed it with flying colors (staying on the machine longer than most and longer than required).
- My cardiologist said despite persistent afib I’m doing great.
- I exercise daily. (Having a dog helps. Having another dog over for a month—to be trained—ups the exercise count.)
- I’m not particularly overweight (66 yrs old; 6’ tall; 202# w. clothing/shoes). The pulmonologist noticed that I’d weighed 191 a year ago but discounted the fact that measurement was taken while I was under overnight observation for the afib; had no clothes on; and had been taking diuretics intravenously.
- I had edema associated with the bad two weeks (sleep was so bad that I was averaging less than an hour/night actual sleep)—my feet (esp right foot/lower leg) were swollen/numb but when I switched the Diltiazem to the morning the swelling stopped of itself. (A bit of explanation is in order (I didn’t want to hit this group with too much afib related stuff, though the two (afib/apnea) often go together) I had been on a nightly dose of Digoxin/Diltiazem but was allowed to go off the Digoxin (which doesn’t agree with me) after the stress test. By the end of the 2 week sleep dilemma I figured the Digoxin was out of my system. I (actually my partner) reread the documentation that came with the Diltiazem and noticed it was recommended to take in the morning. I switched to the morning and, of itself, the swelling was severely curtailed.) (By the way, the sleep has been going better...)
- I have very low blood pressure, so diuretics are a concern...

Space45: I suffered long and hard with severe nightly leg cramps—on those nights following heavy physical exercise (e.g., chain sawing, etc.) If I was ‘good’ and drank lots of water the cramps did not happen. If they did I found a banana IMMEDIATELY took care of the problem (if it came back later…another banana). The pulmonologist recommended I continue with the banana approach.

Old dude: does the CHF only show up when your AFIB is active? I don’t know how to answer that. I have persistent afib which means the afib is always present (by design).

Jencat824: I’m going to read yours after posting. (thank you)

[AfibApnea]

CPAP Pressure

Turbosnore: According to Encore Basic (which I use to better communicate with my RTs):
Auto CPAP Mean: 5.9
Auto CPAP Peak Avg: 7.5
Avg Device Pressure: 6.9

What does CPAP pressure have to do with Central (s Sleep Apnea)?
(Or another way to put the question: Can CPAP cause worse sleep apnea?)

[AfibApnea]

Jen

Thanks for the space and time.

The most difficult part was figuring out what “BIL” stood for.
(MIL was a great clue! (though I didn’t know what that meant either) It didn't help that I was stuck on “BryanIL”.)

Prescription: I diuretic pill every morning. I’ve been taking my BP
(take it a few times and picking the one with the lowest reading) & weight every morning.

Thanks for suggesting that the diuretic may not be permanent. I failed to ask the doctor that question.

And thanks for being that traveler “who is also going down this road”.

[AfibApnea]

Two questions regarding this topic:

1) per Turbosnore's post in which he asked what my CPAP pressures are:

What does CPAP pressure have to do with Central (s Sleep Apnea)? (Or another way to put the question: Can CPAP cause worse sleep apnea?)

2) Where is the study/literature contradicting the widely held belief that drinking liquids is necessarily good and important for you (both as a way of cleansing your body and to remain hydrated)?




p.s. and by the way regarding (old dude's post re.) Congestive Heart Failure and afib:
1) afib and CHF are not necessarily related.
2) afib cannot necessarily just be "taken care of" (just as often a person is left in afib)
3) ablation does not necessarily take care of afib nor is it often the prescribed therapy (it may be one of the last options before a pacemaker)

[jencat824]

Jen

Thanks for the space and time.

The most difficult part was figuring out what “BIL” stood for.
(MIL was a great clue! (though I didn’t know what that meant either) It didn't help that I was stuck on “BryanIL”.)

Prescription: I diuretic pill every morning. I’ve been taking my BP
(take it a few times and picking the one with the lowest reading) & weight every morning.

Thanks for suggesting that the diuretic may not be permanent. I failed to ask the doctor that question.

And thanks for being that traveler “who is also going down this road”.

Sorry for the abbreviation. BIL stands for Brother In Law, MIL Mother In Law. Didn't mean any confusion & hope the info helped you some.

I'm glad to hear that your RX is only for once a day. Bryan is on 3x a day for 1 diuretic & 2x a day for another. We've set times & I call to remind him for each time. A lot of work, but I'm the family care giver, so that's what I do.

The only once a day tells me your case is not severe by any means, so hopefully once they get your lab numbers where they want them you may not have to be as stringent with your routine, or maybe they will take you off the diuretic. Let me know if you have any other questions or concerns, I'm glad to help when & where I can.

Jen

[Janknitz]

Afib, are you by any chance taking statin medications?

The reason I ask: http://www.westonaprice.org/cardiovascu ... thy-hearts

Researchers now consider CoQ10 deficiency to be a significant cause of heart failure and coronary artery disease.

See also: http://www.westonaprice.org/cardiovascu ... atin-drugs

Co-Q10 depletion becomes more and more of a problem as the pharmaceutical industry encourages doctors to lower cholesterol levels in their patients by greater and greater amounts. Fifteen animal studies in six different animal species have documented statin-induced Co-Q10 depletion leading to decreased ATP production, increased injury from heart failure, skeletal muscle injury and increased mortality. Of the nine controlled trials on statin-induced Co-Q10 depletion in humans, eight showed significant Co-Q10 depletion leading to decline in left ventricular function and biochemical imbalances.

NOTE: I am NOT telling you to stop taking statins if you are on them (that's a discussion for your doctor to have), but there's some good information in there--if you are taking statins and not on a CoQ10 supplement particularly. A dear friend of mine is watching her husband die from CHF. When she brought up CoQ10 his cardiologist laughed in her face. Meanwhile, he husband continues to decline. Do your own research, get a second opinion if necessary.

I would also suggest you watch your blood pressure carefully. Get a home monitor if you don't already have one, and use it several times a day. If the diuretic lowers your blood pressure too much, you could pass out--you don't want that happening when you're driving, on a step ladder, away from home. Make sure that if it's going too low you call your doctor immediately. Sometimes doctors are so stuck on a regimen (CHF = diuretic) that they don't stop to pay attention to the person in front of them.