fluid retention in between treatments

[texasstyle]

 I'm just wondering, what is the average amount of fluid that gets taken off you during one dialysis sessions. I know everyone's will vary but my husband gets pulled an avg. of 11-13 lbs. each time. To me, that's a real lot but maybe I'm wrong from lack of understanding all this so far. As you may know he goes 2x a week. Almost daily vomiting and sleeps like there's no tomorrow.Weak, often lightheaded. He says it's from not being able to sleep at night but it's like you can't ever break the cycle. His dialysis nurse said he probably wouldn;t sleep ggod at night until he got a TP. Thanks for the input. Helps me to understand better

[YLGuy]

3.5 kilos but .5 is washback so I leave 3 kilos lighter(6.6 pounds) on average. 3 days/week

[Rerun]

I've heard it should be 3% of your dry weight.  So if you are 50 kilos then you can put on 1.5 (3.3 pounds) between runs.  I'm about 50 kilos dry weight and I put on 2 kilos (4.4 pounds) in between runs.

So take your husband's dry weight (or what they have him at) and times it by 3% and see what you get.

11 - 13 pounds of extra fluid his heart is having to push around is not good.

Maybe he should go 3 x a week. 

Hope this helps~                   

[Hanify]

When I did in centre haemo I was 61kgs and we learnt to refuse to let them take more than 1.5kgs off me.  That sounds like a lot your husband is getting taken off - but as Rerun said, it sounds like he needs to go 3 x a week.  Also his other symtoms sound like he's not getting enough dialysis to me.  Sorry.

[Brianna!]

I get sick if I get 2 or more kilo's taken off.  Right now I only gain about .5-1.5 And then I feel fine. I get sick so easily, do you guys know why that is?

[RichardMEL]

I always try to keep my fluid gain to 2kg or less between sessions (so the weekends are harder because of the extra day). Strangely enough just my last session today we were all set to take of 2.1 (1.6 change + 0.5 washback) and somehow the UF target was set to 3l, and nobody (including me?!) noticed... so I came off 0.9 under my dry weight. I only felt a bit funny or near cramp. Hmmmmm

Luckily it's the staff christmas party tomorrow! Guess who has 2-3 drinks worth of bonus fluid allowance?!!! WOO HOO!

texasstyle I've noted before your hubby doing 2x/week is very odd to me. If he's throwing up, sleeping lots and sick he really should be doing more - - both to remove the toxins that are obviously clogging his system AND that extra session will mean he won't be putting so much on between sessions so will be taking less off each time (in theory, anyway) which will probably make him feel better.

I simply do not understand why they have set only 2x/week.

[texasstyle]

Thanks for your input. I had a good idea 11 lbs. was a lot to take off, but learning from the rest of you makes me feel......like I'm not crazy lol. I can't figure out the 2x a week either. Center says his #'s are good for only 2x but they don't live with him. He hates going to dialysis and I think he doesn't tell them the truth about what's really going on in fear of a 3rd session. I've talked to his nurse and let her know. When he first saw a Neph his GFR was 25-30%. About 6 months later he went into hosp with CHF and they started dialysis (chest cath) & eventually got his fistula. I'm assuming by that point his GFR must have dropped to at least 15% because that's when they start the dialysis right? From what I read here about the "beef jerky" lol, I'm can imagine his amount of fluid drain must make him feel worse than that. Road kill maybe? Hhm.. Does anyone here go 2x a week and if so, what it the reason for only 2 sessions? I don't even do it but I HATE DIALYSIS TOO! Feels great to vent and understand more about it through everyone's experience. I can't thank you enough for your input. I have so much to do for the holidays but I don't feellike getting out of my robe. Better hang the garland outside because by the end of the week we're supposed to have wind chills around 17!  I do one day at a time and do the best to take care of ME too. It just gets depressing when I have to work around his sleeping which is all the time. Maybe today will be a better day.

[fc2821]

  In almost three years of going to dialysis I have never run across anyone going just two times a week, unless they were non compliant.It probably happens, just not my experience to know of anyone.  I would try to have a serious discussion with his Neph and explaint to him what you know and see if he/she feels an adjustment might be necessary.
  I know it gets tough at times, more than you thought you can deal with, but "hang in there" it IS worth it.  You are a very good person for doing what you do. It is ok to vent, a person needs to do so every once in a while. You have people here who understand.
  I hope thing improve for you both.

[Hanify]

I've never heard of 2 x a week here (NZ), but then we always make people do 3 x a week 5 hours a session to get as much dialysis as possible.

[RichardMEL]

TS - I think you should "sell" it to hubby as the positives he would get from 3x/week rather than two - as in he would be cleaned more so would have more energy and feel better overall (he should do, anyway). Yes, it's another set of needles and sitting in the chair for 3 hours(or whatever) but it WILL be totally beneficial to him - in more ways than one.

I love the comment (not) that "his numbers are good for 2x/week" - yeah the labs may say one thing but that's ignoring the patient and how they are feeling - though if he's not telling them the whole truth as you suggest then there's not much they can do... Sadly I can understand him doing that, but really... who else does 2 times a week? nobody that I know of. it's all very strange.

I also point you to the kidney talk podcast: http://www.rsnhope.org/programs/kidney_talk3.php and the latest edition deals with the "more dialysis = better result" issue somewhat:

Trading Places - What Happens When a Doctor Becomes the Patient?
Dr. Peter Laird offers his perspective as both an internal medicine doctor and a person with chronic kidney disease. Do yourself a favor; visit with Lori and Dr. Laird as they discuss his telling experiences transitioning from a healthcare professional in charge of many other peoples' health. He shares his journey as a patient and his limited level of control over his own care - even literally changing places with a former patient that became his doctor. This is a show that neither patients nor professionals should miss!

[texasstyle]

Oh geez, & here I thought today would be a better day. I'm so stressed and frankly tired of being stressed. Hubs has been a little heavy since last night and very weak. He said this morning I don't know why I'm so exhausted. Well, I think I do now. Learning now about how hard the extra fluid is on you plus the fact the toxins are probably so built up in his body EVEN though he had dialysis Mon. 3 1/2 hour session.(goes again Friday) I think I get it: that last session may have not been enough to pull the crap out of him. Zach? I believe, said that the fluid can build up in your tissues and that dialysis mostly pulls from the blood. Believe you-me, I want that extra session. It is so to his benefit. Why the heck he can't figure that out is beyond me. I am going to keep a close eye on the breathing to make sure it's not CHF. It's not like he's panting, but  I can see th exhaustion must be wearing on his body in more ways than one. Last time he went into heart failure it came on in a day. Legs filled up & breathing was SUPER heavy. Had to sit up basically. This time is not like that. If anything went really bad I would get him to hosp. Don't worry. he's been sleeping all day. Up periodically for bathroom etc.. Thanks for being there for me. It means more than anyone will ever know!

[RichardMEL]

*hugs*

this is a very worrying and stressful time for you obviously. It is sad that he is resistant to a treatment that should make him feel better. Although I can understand it totally - if they said to me beyond doubt I could survive fine on two sessions a week I'd do handstands... but then I'd probably think about it and given what I know, stick with the three because I know how good it is for me to do the extra hours (and I do 5 hour session). The fact that he is heavy,sleeping so much, feeling ill and having trouble breathing says volumes to me (pun intended) about where his fluids are at.

I get the feeling whoever is reading his labs is running on a notion of minimal adequate dialysis, like a Kt/V of 1.2 or something.. as in the bare minimum. "Oh the labs look good" well yeah, but what about the quality of life of the patient? Sleeping all day? throwing up? unable to breathe? huh? that sounds like pre-dialysis ESRF symptoms to me. It sure sounds like he's not getting enough dialysis to me and his neph really needs to be consulted ASAp about it.

It's extra difficult when the patient himself is not very helpful and resistant to doing more. I can only stress again to sell it in terms of the benefits it should bring to him, rather than the hassle.

I dialysis 3 times a week and work full time(well when not at D, of course) and do NOT sleep all day. At the weekend I walk for a couple of hours and try to walk/exercise every day. I consider my lifestyle is OK - not fantastic - but I try and actually live a life, rather than going through days feeling like crap/sleeping.

I really hope things can improve for hubby.

[chiefsfan301]

Started dialysis Oct 2009 3X 3hours for two weeks, then changed to 2X 3hours, December they changed me to 3X 3hours per day and the only take off .5

[Hanify]

Oh I so don't blame him wanting to stick to 2 x a week.  I would too - anyone would.  But he'll realise soon that he needs to - but what a time for you.  Thinking of you both.

[texasstyle]

Richard, I've been listening to all the podcast topics all morning. Thanks for the great link!