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Author Topic: He's Doing The Fluid Overload Groan  (Read 506 times)
PrimeTimer
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« on: August 03, 2020, 07:40:31 PM »

It use to not be this way. For a long time now my husband has been regularly finding himself fluid overloaded and moans and groans in discomfort. Every move he makes then becomes a chore because it affects his breathing. Then he goes to dialysis and comes home feeling better -and is quiet (the moans and groans stop). This has gotten to be quite stressful and scares me to death. We all know what can happen when a dialysis patient is fluid overloaded. It puts a load on the entire body, particularly the heart. But it also puts stress on their loved ones, too. We worry to no end. On top of all our other worries right now, I don't need this. He doesn't need this. No one needs this. And to be even more honest, the moaning and groaning sounds get on my nerves. It's almost like hearing a pregnant woman in labor. Thanks to Pulmonary Sarcoidosis and now Fibrosis, I am breathing with only one good lung and with the help of oxygen and even I don't make as much noise as he does. I don't mean to sound insensitive because really, I am not. Anyone can read on this site how supportive I've been and how much I love him since he started dialysis nearly 7 years ago but...there is nothing I can do other than tell (beg) him to watch his fluid intake and listen to his moaning and groaning. It's almost becoming too much. For anyone reading this that finds themselves fluid overloaded....DON'T. Please, please watch your fluid intake!  :'(
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Husband has ESRD with Type I Diabetes -Insulin Dependent.
I was his carepartner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
kitkatz
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« Reply #1 on: August 03, 2020, 10:39:13 PM »

It's so hard to watch fluid intake when it is hot during the summer.  I am sure he is well aware of what he is doing to himself.  Sometimes the brain just will not stop the bad habits.  It is a twisted way to live.
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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
kristina
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« Reply #2 on: August 04, 2020, 06:45:33 AM »

It use to not be this way. For a long time now my husband has been regularly finding himself fluid overloaded and moans and groans in discomfort. Every move he makes then becomes a chore because it affects his breathing. Then he goes to dialysis and comes home feeling better -and is quiet (the moans and groans stop). This has gotten to be quite stressful and scares me to death. We all know what can happen when a dialysis patient is fluid overloaded. It puts a load on the entire body, particularly the heart. But it also puts stress on their loved ones, too. We worry to no end. On top of all our other worries right now, I don't need this. He doesn't need this. No one needs this. And to be even more honest, the moaning and groaning sounds get on my nerves. It's almost like hearing a pregnant woman in labor. Thanks to Pulmonary Sarcoidosis and now Fibrosis, I am breathing with only one good lung and with the help of oxygen and even I don't make as much noise as he does. I don't mean to sound insensitive because really, I am not. Anyone can read on this site how supportive I've been and how much I love him since he started dialysis nearly 7 years ago but...there is nothing I can do other than tell (beg) him to watch his fluid intake and listen to his moaning and groaning. It's almost becoming too much. For anyone reading this that finds themselves fluid overloaded....DON'T. Please, please watch your fluid intake!  :'(

Hello PT,
I am so sorry that your husband goes through this and it is surely very hard to keep to liquid-intake-limits in this hot summer-time. I also feel very sorry for you and the huge effect it has on you, as you can see much more clearly what could happen to him.

Is there any possibility to distract his mind? Could it help him to reduce the liquid-intake if he lets some very small ice-cubes slowly melt in his mouth, one at a time? Could he also try to make his heart a little stronger with some very gentle exercises?

I remember that during my stroke-rehabilitation I tried very hard to concentrate and play a little croquet outside in the shadows? It certainly helped me a bit to get going! There are some very cheap second-hand croquet-sets to be found on the Internet etc. and it certainly gives a bit of exercise and is also a very fascinating hobby.

I do hope you both get a little better, especially his current liquid-overload and your battle with Sarcoidosis/Fibrosis and I am thinking of you both and send my best wishes and kind regards from Kristina. Take care. :grouphug;
« Last Edit: August 04, 2020, 06:47:05 AM by kristina » Logged

Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

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PrimeTimer
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« Reply #3 on: August 04, 2020, 11:12:17 PM »

He sucks on ice cubes but then also drinks glasses of water and has coffee in the mornings. He use to be so good at controlling himself but these past few months he just hasn't. He has the sort of job where he has to be active so that counts as exercise but of course, the hot summer makes him thirstier. I also suspect the prescription pain medicine he takes for his Restless Leg Syndrome is drying him out. He also takes an antihistamine for allergies (pollens) and I can personally attest that allergy pills are very drying. All these things add up and make him very thirsty. And so does stress. We've been under enormous stress these past few months (financially, physically, medically) with no remedy to it any time soon. He needs to "buckle down" and take better care of himself. When I wasn't sick I could be more supportive but I hardly have much left in me these days so I really need him to look out for himself. He knows what to do/not do. It's hard to see him like this and the sounds of his groaning in discomfort add to it. Our families have not a clue as to what we are going through, they never did understand and never will I guess. So we do not have their support or to vent to, so I came on here and let loose. Thanks for letting me rant. I am really trying to hang on as best as I can. I have never been so "zapped" of life before.
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Husband has ESRD with Type I Diabetes -Insulin Dependent.
I was his carepartner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
kristina
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« Reply #4 on: August 05, 2020, 01:27:45 AM »

Dear PT, I feel very sorry for you and wish I could do something to comfort and help you and just hope something positive comes up for you both a.s.a.p.
Kind regards good-luck-wishes from Kristina. :grouphug;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
cassandra
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When all else fails run in circles, shout loudly

« Reply #5 on: August 05, 2020, 05:26:45 AM »

Hi PT I really hope situations on your side start to improve soon. I found this site


https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4829814/


Maybe you use Turmeric already though.


Strength, love and luck, Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
MooseMom
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« Reply #6 on: August 05, 2020, 01:03:46 PM »

I suspect something has changed in your husband's psychological landscape.  He used to be so good at this, but now he's not.  He knows what he should not do, yet he does it, anyway. 

This might sound silly, but when has that stopped me from saying anything!  LOL!  Anyway, these past few months have been hard on everyone; the palaver surrounding covid has unsettled every single person I know.  Do you think your husband may be feeling the stress and foreboding that most of us have been feeling?  Do you think it is possible that he may be unthinkingly thinking, "Oh, what the hell.  It's just a matter of time before this thing gets me."  I have actually found my own mind flipping and flopping around that notion from time to time.

It must be very frustrating for you to watch your husband indulge in what is rather self-destructive behavior.  I am really sorry.  It must be hard to keep your temper.  If ranting on IHD helps, have at it!

On a practical level, my mother used Biotene mouth wash while she was on dialysis.  She said it really helped (along with ice cubes).

Oh, yes, antihistimines definitely dries out mucus membranes like those in the mouth.  I mean, drying you out is what they are meant to do!
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
PrimeTimer
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« Reply #7 on: August 06, 2020, 03:57:26 AM »

Moosemom, you may be on to something. Maybe he does feel like giving up or is letting stress justify his "out of compliance" behavior. Maybe at a time when we feel we have no control over anything we do things that we shouldn't as a sort of "come and get me, I just dare ya!" type thing. I've certainly been guilty of that. And he's been "so good" for so long that drinking water when he wants and as much as he wants is his little way of saying that to a world that as of late, has seemingly betrayed us. I am going to give this some more thought and try to be more supportive of him. I need to find a way that lets him know that I am still on his side, just not as strong as I was. But still here.
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Husband has ESRD with Type I Diabetes -Insulin Dependent.
I was his carepartner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
PrimeTimer
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« Reply #8 on: August 06, 2020, 06:54:47 PM »

To be fair, I admit that I make my own noise. My husband hasn't complained but if you stand close enough you can hear the "screaming eagle" inside my chest. Other times my breathing sounds like the underwater songs of the Humpback whale. Still not as loud as his "pregnant woman in labor" moans tho.
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Husband has ESRD with Type I Diabetes -Insulin Dependent.
I was his carepartner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
MooseMom
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« Reply #9 on: August 06, 2020, 07:20:57 PM »

To be fair, I admit that I make my own noise. My husband hasn't complained but if you stand close enough you can hear the "screaming eagle" inside my chest. Other times my breathing sounds like the underwater songs of the Humpback whale. Still not as loud as his "pregnant woman in labor" moans tho.

Yeah, but your "sounds" are from something self-inflicted.

I'm sure you are being very supportive.  I hope he will get his act together soon!   :cuddle;
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
kitkatz
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« Reply #10 on: August 06, 2020, 09:34:57 PM »

Kidney disease has varying effects on the brain.  I go through many times where I do not give a flying flip about my intake.
I have managed to teach myself several tricks for fluid management.
I have an insulated cup of ice at hand throughout the day.  It keeps me in my fluid limits and yet I feel I have something near me to have at all times.
I can make a drink last for hours by sipping on it.  I also add ice to drinks to keep the volume down in them. A few sips then it goes down beside me until I want some more.

Others:
Frozen grapes
Chewing gum or mints
Mouth wash
Brush your teeth and rinse
Rinse your mouth out




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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
PrimeTimer
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« Reply #11 on: August 06, 2020, 10:15:08 PM »

To be fair, I admit that I make my own noise. My husband hasn't complained but if you stand close enough you can hear the "screaming eagle" inside my chest. Other times my breathing sounds like the underwater songs of the Humpback whale. Still not as loud as his "pregnant woman in labor" moans tho.

Yeah, but your "sounds" are from something self-inflicted.

I'm sure you are being very supportive.  I hope he will get his act together soon!   :cuddle;

Self-inflicted?? Am I misunderstanding something? My Sarcoidosis and fibrosis isn't self-inflicted... :'(
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Husband has ESRD with Type I Diabetes -Insulin Dependent.
I was his carepartner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
MooseMom
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« Reply #12 on: August 07, 2020, 08:12:26 AM »

Oh, PT, I'm so sorry!!  That was a typo on my part!  LOL!  No, of course your sarcoidosis and fibrosis are NOT self-inflicted!  Your hubby's "flouting" the rules results in self-inflicted harm (and groans).  You certainly can't help the pain that you are in.

I wish there was something more we could do for you than just send words via a keyboard.  But I suppose being a soundboard can be helpful, yes?  So you just rant whenever you like!

Again, I apologize for my typing error.  I was in a hurry, and I was nervous because today was lab day for me.  I hope you can find some peace today.   :cuddle;
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
PrimeTimer
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« Reply #13 on: August 07, 2020, 06:36:49 PM »

 :rofl; That's ok, MM! I kind of thought that may have been the case. These are not normal times. Everyone is SO stressed! Makes it hard to even think straight. I actually saw a post on another site where the person was in South Carolina and telling people "Don't panic! This hurricane is the only normal thing to happen this year!" 



Hope your labs turn out good and will give you peace of mind, MM. All of us need to try to find something to get our minds off all this stress. Even if it's only in small daily increments. I watch people walk their dogs from my window and at least during that time I feel happy and a million miles away.   
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Husband has ESRD with Type I Diabetes -Insulin Dependent.
I was his carepartner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
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« Reply #14 on: November 10, 2020, 04:59:08 PM »

 
Hope your labs turn out good and will give you peace of mind, MM. All of us need to try to find something to get our minds off all this stress. Even if it's only in small daily increments. I watch people walk their dogs from my window and at least during that time I feel happy and a million miles away.

Seriously, the thinking never ends so anything that would temporarily divert our thoughts is great. Having a dog is a good one.
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