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Author Topic: Liquid restriction  (Read 4240 times)
pianoflute2
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« on: March 24, 2015, 09:38:21 AM »

Hey, I'm not sure if this is in the right place or not, so yeah...

My little brother and I were wondering what everyone's fluid restrictions are. He is only allowed one liter of fluid a day, and it's driving him batty!
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Simon Dog
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« Reply #1 on: March 24, 2015, 09:47:29 AM »

One liter is fairly typical for hemo patients on an in-center protocol.     Tell him it gets easier to deal with over time.   I don't measure my fluids, but have developed a sense of how much to drink to keep my gain down to a manageable level.

A 5 or 6 day a week NxStage protocol would probably allow him to relax it a bit, but would not take him "off restrictions".
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iolaire
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« Reply #2 on: March 24, 2015, 09:58:20 AM »

It also has to do with how much urine you are producing.  That one liter limit is the standard for people with little to no urine production.  If you are producing a good bit of urine you might be able to figure out a (personal) drinking plan that allows more liquid.

Overnight I can loose upwards of four pounds or about two liters.  So I worry more about not drinking too much before my afternoon dialysis but not too little.  They want to take off a minimum of 500 ml + 500 ml which they add back at the session, so if I did not drink during the day they would take off too much.  But alternatively if I drink a lot during the day they will try to pull it off me during dialysis and that is not so nice...  They say the urine output decreases after starting dialysis, but at this point 1.5 years in I'm still going strong.
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
pianoflute2
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« Reply #3 on: March 24, 2015, 11:25:54 AM »

Thank you guys!! We discussed it with his doctor and he said the same thing :) Poor Daniel is just so thirsty!
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dublin
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« Reply #4 on: March 24, 2015, 12:13:43 PM »

Hi 1 liter for me as well which i can not stick to and mostly consume water and 7up free in ice cube form to help with the thirst but over 3 years now that i can not drink enough water to get rid of my thirst i also free a hand full of grapes solid they are lovely and also oranges i freeze as well it will help your bro to make ice cubes when i go to the gym 4 days a week while i can i bring a bottle of ice cubes with me that's how i try limit the fluids good luck to your self and your bro :waving;
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Michael Murphy
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« Reply #5 on: March 24, 2015, 01:12:26 PM »

Try a spray bottle when your mouth is dry, gum, hard candy, frozen grapes also help.
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Riki
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« Reply #6 on: March 24, 2015, 06:45:17 PM »

I wouldn't use oranges if your potassium is high.  I love them, but they are a big no no
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« Reply #7 on: March 25, 2015, 10:11:11 AM »

If he works out and sweats he can have a little more.  It is hard to judge though.  It is amazing how much fluid you lose when you sweat.
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PaulBC
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« Reply #8 on: March 25, 2015, 10:41:47 AM »

It is amazing how much fluid you lose when you sweat.

I imagine it will also regulate your electrolytes to some extent. I tried to look up research on this, but only found a little. Are there any serious, recent studies on the extent to which sweating can augment dialysis? It's not the same as a kidney, but neither is your peritoneum. I think it would be useful to have an entire "portfolio" of clearance functions instead of focusing on just one.
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jeannea
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« Reply #9 on: March 25, 2015, 03:01:03 PM »

I was told I could drink 1 liter plus the volume of urine I put out. I was still peeing about 300 mL a day so that would mean a restriction of 1300 mL. The adjustment is really hard but it gets at least something you are used to. The people here have lots of advice. He can experiment by a little and see if it makes him swell up but that's maybe not the best way of finding out. I hope it gets better for him.
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kristina
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« Reply #10 on: March 26, 2015, 02:32:26 AM »

Hello pianoflute2 (which one is it: piano of flute or is it both?)
At first (after starting dialysis) I drank only 1 liter every day, but then I noticed
that my "water-departments" became a bit lazy as a result and because of that
I started to drink exactly 1 liter and 335 milliliters every day to keep "everything going"
and keep all my organs as healthy as possible for my transplant.
Best wishes from Kristina.
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                                          ...  Oportet Vivere ...
bliss85
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« Reply #11 on: March 26, 2015, 08:18:46 PM »

I no longer think about my fluid restrictions...I just kind of sub consciously know if i am drinking too much....however i can also tolerate big take offs so its not really an issue to me....but the less you need to take off the better and easier your treatments will be generally speaking.
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In-center Hemo Dialysis since 2009 (out-patient)
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pianoflute2
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« Reply #12 on: March 26, 2015, 10:20:35 PM »

Daniel doesn't handle bigger take offs very well, makes him miserable. I think that once he gets more used to the restriction he'll do better, it's just that it's so new to him.

It's just piano flute 2, you can call me Annie, Anna Marie, or piano. Whatever works for you!

Thank you guys for all your responses! 
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Sugarlump
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« Reply #13 on: April 02, 2015, 08:29:46 AM »

Fluid restriction is the hardest ... especially in hot weather or when everyone else is drinking or eating ice creams...
Ice is the answer (more refreshing) and a glass of ice cubes takes longer to consume and less fluid than a glass of water/juice..
You can also freeze lemonade or fruit juice in cubes for flavour...blackcurrant juice (Ribena) is particularly good.

Also even though it's not a great habit to acquire, chewing gum works quite well too. Creates saliva and a freshness in the mouth...
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10 years of half a life
3 years HD 1st transplant Feb 08 failed after 3 months
Back to HD 2nd transplant Dec 10 failed after 11 months
Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital)
Back on HD (not easy to do that third time around)
Fighting hard (two years on) to do home HD ... watch this space!
Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!!
The power of optimism over common sense :)
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