How much fluid should we be carrying?

[Henry P Snicklesnorter]

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[billybags]

Henry , I thoroughly agree with you there, that's why people should learn as much as they can about Dialysis.

[RichardMEL]

I'm with you Henry, though I arrived at the same conclusion a little differently I guess.

I was sitting on 77.5, lowered to 77 and a few times cramped, or felt close to it. I requested to go back, they wanted to only raise by 0.2. Luckily mostly they listened to me so I increased it. I wound up at 78 and felt quite comfortable with the extra ~litre on (doing HD). I didn't have any swelling or obvious fluid retention and the little bit extra was worth it as a buffer against crashing or cramping. I knew I had a bit on, but it worked for me and I wasn't too worried about it. I think being a little bit wet is probably OK as long as it's not obviously being retained. Too much can obviously get around the heart and lungs, and raise BP and cause stress on the cardiovascular system, but a little bit is probably OK, and worth it to reduce the risk of a cramp or crash.

Luckily I was in the sort of unit where they listened to me more than they didn't and if I wanted to challenge my dry weight they usually accepted it if I had reasonable reasons.

[cattlekid]

Interesting reading!  I am currently starting week five of dialysis and I am experiencing every symptom in the book - cramping, dizziness, nausea, low BP, you name it.  They try to take 3.5 k off each time on Tuesdays/Thursdays.  I keep telling them it's too much but they always say "let's just try" and I end up with the nasty symptoms.  Saturday, they only had to take off 1.2 k and I skipped out of the D center, I felt so great. 

I'm still urinating, my BP is reasonably okay, I follow the stinking fluid restrictions. Like you, I can't figure out what the rush is to get me down to dry weight.  Especially since it's being set by a neph who I've never seen before and doesn't know my history.  I think I'm going to start being a little more vocal about the amount they take off - hell, they get paid either way, right? 

[RichardMEL]

Absolutely you should. It's your body and your treatment - at the end of the day you should decide what works for you - right or wrong.

A neph is setting your dry weight who you have not even seen? huh? how does that work?

I understand usually a doctor sets dry weights, though in my unit that was usually left to the nurses IN the unit who saw people day to day and they usually managed that wehich seems far more practical to me - I mrean they know when you're cramping and can adjust on the fly.

What I would do is ask them to run a crit line/BVM to figure out if you're too wet or too dry - this should get a more reliable measure of what your dry weight should be. If they are unwilling to do that, then absolutely you sound like you have the symptoms of too much fluid being taken off and this should be addressed then blindly trying to reach for a goal that seems set by someone remote from the whole situatioin.

Good luck with your fight!!

[texasstyle]

Well... I can tell you this much. My husband carries way tooooo much. It is not unusual for them to take off 14 lbs. on the inbetween days of the week and sometimes 18 lbs. after the weekends. I didn't ask how much they took off today. Last night I noticed the fronts of his hands even looked somewhat blown up. I have to think that in order get a dry weight that works best for you, you need to come in at the same weight each time. If you flucuate they'll never figure it out. PS: sometimes when a lot of fluid is taken off he drops his BP (like others I'm sure) and gets dizzy. Why do they put saline in the line to help with this? I can see rehydrating with fluid but saline is essentially salt right? Thanks

[tyefly]

when I was in center    they tried the same....trying to take off too much .... cramps all the time.... I too started telling them a different weight so I would not cramp....  finally  I just put my foot down and told them how much I wanted off.....  yes I threw a big fit....but  its my body and its my treatment.... I hate to have to do that ..... but I also had to watch the machine because sometimes they would just put in the numbers..  not the numbers I told them..... LOL....    I believe no one should come out of there dehydrated....  its not that big of a deal to leave some water on....  as long as your BP is good.....  I just wish more people could stand up for them selves....

[*kana*]

Well... I can tell you this much. My husband carries way tooooo much. It is not unusual for them to take off 14 lbs. on the inbetween days of the week and sometimes 18 lbs. after the weekends. I didn't ask how much they took off today. Last night I noticed the fronts of his hands even looked somewhat blown up. I have to think that in order get a dry weight that works best for you, you need to come in at the same weight each time. If you flucuate they'll never figure it out. PS: sometimes when a lot of fluid is taken off he drops his BP (like others I'm sure) and gets dizzy. Why do they put saline in the line to help with this? I can see rehydrating with fluid but saline is essentially salt right? Thanks

Does he know how serious this is?  He will start to have some serious problems if he doesn't get that under control.   When I was on Hemo I only gained 1-2#'s and I have no kidneys at all. You need to purchase a snow come maker for him and freeze in ice cube trays whatever liquid he is drinking so much of.   You should also buy him those Ice Pops that have very little fluid but quench the thirst.  Best of luck!   

[texasstyle]

Kana, a number of the members know my situation. He recently from fluid bild up had his lungs collapse and had Pericadial tamponade. (pressure around the heart made the heart muscle burst and rupture. He almost died on table. Suregon said "you came as close to death as someone can come without actually dying". The family was a wreck. I don't think it phased him too much. Just a little. Anyway about my question, do you know why they use a salt solution to get your BP back up at D? I've always wondered an this thread made me question it even more since it's about taking fluid off at D. I can't get the "salt" part. Hmm.... We but pineapple ice pops. The kind fom real fruit. The things is you can't have a 55 ballon drum of chicken noodle soup and then expect to have that one ice pop make thngs ok. Right? lol Gee...

[texasstyle]

ops.. I was being humoursly sarcastic about the soup not really questioning lol

[RichardMEL]

I am not certain the salt has a lot to do with it. The saline solution is more a neutral(I thought anyway) solution. Getting some fluid back in I think rehydrates the blood or something and that helps stabalise the BP, but I could be way off on that one.

[casper2636]

As I understand it, it's not the "salt" that they are adding back into you, it's the H20. The Uremia and all the other "baddies" are being taken out along with the extra liquid.Too much at once will make your BP drop, and you can cramp, get lightheaded and dizzy and throw up (my favorite!).Adding H20 will bring up your pressure because the more hydrated you are the higher your BP will be. If you leave D with high BP, maybe they haven't taken enough off...in the same respect, if you leave too low, they've taken off too much. IT"S A SLIPPRY SLOPE!

[Henry P Snicklesnorter]

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[Henry P Snicklesnorter]

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[RichardMEL]

thanks Henry - that makes a lot of sense. 

[kristina]

I posted earlier on the variance of opinions of some of the health professionals I deal with. One major difference, from my experience, is in how much fluid I should retain, and therefore, what my ideal body weight target should be.

I first started on haemodialysis and their objective was to get me as dry as a desert in the middle of a drought.
As this was all new to me, I initially accepted that this was how it had to be, - always thirsty, headaches, cramps, blood pressure drops during dialysis etc. After 3 or four weeks I decided that I would be better off carrying more fluid, provided my blood pressure was not adversly affected. Despite their resistance, I managed to get them to raise my body weight by a couple of kilos and the worst of the synptoms disappeared. I had also noticed that my urine output was steadily decreasing from around 900ml daily down to 200 and falling. Because they refused to consider raising my target any further, I developed a couple of strategies to circumvent the system. One of these was to clench the muscles in my ankles when they palpated that area to check for signs of edema. Works a treat.  The other was to record my weight as being 2kg less than it actually was. So instead of the 72kg they initially wanted my target to be, I was, unbeknown to them at 76kg and felt so much better. My urine output also began to increase. Everyone was happy.

Then I went on to PD. Same hospital, different department and totally different outlook. They encouraged me to carry a little more. I increased my target weight to 78kg. (That's 6 litres more than the haemo people initially wanted me to carry!!.) My urine output increased to 6/800ml per day. That is where it has stayed, with my PD co-ordinator stressing the importance of maintaining that for as long as I possibly can, so as to maintain what little residual kidney function I may still have.
Bp is currently a consistent 120/70.
Doubtless, that would also go some way to explaining why I feel so well on dialysis, - my kidneys are still doing a little bit of the work.

To me this is just a further reminder that there is no "Gold Standard" in renal treatments and that so much depends on the personal views of the professional that I am dealing with at the time.

It further reinforces my belief that it behoves us all to question our service providers, make them justify their opinions, (even if that means trading on some toes) and ultimately, makie our own decisions as to the form our treatments will follow.

Thank you for making these important points, Henry,
as it will help pre-dialysis patients to understand better & prepare their strategies.

Thanks again from Kristina.

[texasstyle]

what an excellent answer thanks!