Amount of liquid in end-stage renal failure?

[kristina]

Dear friends, I would again appreciate your comments: my kidney-function fluctuates between 9%-12% and I feel poorly.  I read that end-stage kidney failure patients drink as much liquid (teas, etc) as possible, every 10 minutes a sip, up to 4 litres a day, to stay clear of dialysis for as long as possible. The weight of people drinking such an amount of liquid was not given. My weight is 59-60kg and I wonder if I drink 4 litres of liquid a day would I be overdoing it and rather harm my kidneys instead of keeping them going for as long as possible before dialysis? I weigh myself every morning, check through my weight if there is any water-build-up and it still works well. Thanks, Kristina. E-mail: schmidt56@yahoo.co.uk

[RichardMEL]

Dear friends, I would again appreciate your comments: my kidney-function fluctuates between 9%-12% and I feel poorly.  I read that end-stage kidney failure patients drink as much liquid (teas, etc) as possible, every 10 minutes a sip, up to 4 litres a day, to stay clear of dialysis for as long as possible. The weight of people drinking such an amount of liquid was not given. My weight is 59-60kg and I wonder if I drink 4 litres of liquid a day would I be overdoing it and rather harm my kidneys instead of keeping them going for as long as possible before dialysis? I weigh myself every morning, check through my weight if there is any water-build-up and it still works well. Thanks, Kristina. E-mail: schmidt56@yahoo.co.uk

Never heard anything like that to be honest. When I was at those levels (and not on Dialysis) my doc just told me to eat/drink as per normal (well avoid salt and that sort of thing). I am not sure that deliberately drinking large amounts of liquids, specially stuff like tea, coffee, soft drinks etc - all with stuff in them the kidneys have to filter - is such a smart idea - I mean if your kidneys are failing pushing them to do more doesn't seem so smart. Flushing with water might aid a small amount, but I honestly have never heard of that sort of form of staving off dialysis. Still i guess if it works for you then why not.. though personally I would run this theory by the neph. Your own situation may contra-indicate that sort of approach for reasons you hadn't thought of. I hope you keep off dialysis for as long as possible

[Rerun]

Monitor your ankles.  If they get swollen (or disappear) then your kidneys are not working well enough to get rid of all the fluid.  Don't eat salty foods so you won't be thirsty.  You can try drinking lots of water but I think to drink as you are thirsty would be fine.

[twirl]

my doctor did not put me on a fluid restriction until I started dialysis and as long as I was urinating there was not limit - but thing changed- after awhile on dialysis my urine output got very low - I am on 50 ounces a day -- that counts jello or anything that will melt at room temperature -
I never follow it --- I live in Texas and it can get so hot and humid - the doctor has never said that I gain too much in between treatments -
honestly, I wish I would have been told to drink that much --- except for the fact that I was teaching school, it would have been wonderful

[Sunny]

My kidney fucntion is 15% and my neph tells me to drink lots of water to stay hydrated. If I don't drink enough water, I do feel effects of nausea more.
I drink about 5 to 6 tall 16 ounce glasses of water per day. Luckily, I don't retain much water in my ankles, though I do notice it in my face and abdomen.

[kristina]

Thank you very much for your thoughts, I am so glad that I asked the forum because logic tells us it is better to take great care of our fragile kidneys instead of putting great pressure on them by drinking 4 litres of liquid a day. That seems a little harsh on kidneys who just about try to hang on. It is just that I have read this information, was not quite sure about its logic and as there has not been much research done into this, I thought it a good idea to ask the forum about logical experiences. Thank you.

[Wallyz]

With a GFR of 9-12 you should be on dialysis now.  Talk to your nephrologist.

[kristina]

With a GFR of 9-12 you should be on dialysis now.  Talk to your nephrologist.

Dear Wallyz, sorry that I did not make myself clear: to drink up to 4 litres of liquid a day was suggested by a nephrologist in a medical paper. In another medical paper another nephrologist suggests that patients in end-stage kidney failure should measure their "output", add 600ml to the amount & they should drink exactly such an amount of liquid per day. Another medical article suggests that patients in end-stage renal failure before dilaysis can eat and drink what they like. I got a little confused and dizzy reading these contradicting medical suggestions & I wondered how other patients are dealing with such contradicting medical advice? Which option do they choose? Another riddle is the fact that apart from my high Creatinine of 436  (during an influenza  without any antibiotics because of my severe drug-intolerance) and my fragility, nothing would indicate my end-stage renal failure: my BP is perfectly under control with 120/70, I check it at home regularly, my weight has not increased, my “output” reflects exactly my “input”, and because I suffer from a very rare form of MCTD/SLE, my hope is that by supporting my kidneys the best I possibly can with diet and the least stressful fluid-input etc, I give my kidneys the best possible chance to “hang on” for as long as possible, this might give me a chance to be lucky and find a specialist who can tell me what precisely is going on to cause my kidney failure – and maybe...
Dear Walllyz, please excuse my asking but could you please explain me your startling logo? Are you a dog-handler or looking after strayed dogs? Please excuse my asking, but English is not my first language  and your logo startles me a little. Thank you from Kristina.

[RichardMEL]

Dear Wallyz, sorry that I did not make myself clear: to drink up to 4 litres of liquid a day was suggested by a nephrologist in a medical paper. In another medical paper another nephrologist suggests that patients in end-stage kidney failure should measure their "output", add 600ml to the amount & they should drink exactly such an amount of liquid per day. Another medical article suggests that patients in end-stage renal failure before dilaysis can eat and drink what they like. I got a little confused and dizzy reading these contradicting medical suggestions & I wondered how other patients are dealing with such contradicting medical advice? Which option do they choose? Another riddle is the fact that apart from

I believe the confusion you are seeing is because the "measure output and add 600ml thing is almost certainly a suggestion for those *ON DIALYSIS* - down here we use a figure of 500ml plus output for a *recommended* daily amount of intake. For instance I output around 100-200ml a day, so in theory I'm supposed to keep it to about 700ml max. What I do in practice is I keep to 2kg (2000ml) between treatments, so that means I go around 1l or so a day. The 500ml (or 600 if you prefer - not THAT much difference) is derived from the usual fluid loss through sweating and what the body absorbs naturally.

So you're trying to corelate two different suggestions for two different situations (one pre-dialysis, and one during)- of course that will cause confusion!

btw you think a 436 creat is hight? LOL. Mine last week was measured as 1000!

[kristina]

Dear Wallyz, sorry that I did not make myself clear: to drink up to 4 litres of liquid a day was suggested by a nephrologist in a medical paper. In another medical paper another nephrologist suggests that patients in end-stage kidney failure should measure their "output", add 600ml to the amount & they should drink exactly such an amount of liquid per day. Another medical article suggests that patients in end-stage renal failure before dilaysis can eat and drink what they like. I got a little confused and dizzy reading these contradicting medical suggestions & I wondered how other patients are dealing with such contradicting medical advice? Which option do they choose? Another riddle is the fact that apart from

I believe the confusion you are seeing is because the "measure output and add 600ml thing is almost certainly a suggestion for those *ON DIALYSIS* - down here we use a figure of 500ml plus output for a *recommended* daily amount of intake. For instance I output around 100-200ml a day, so in theory I'm supposed to keep it to about 700ml max. What I do in practice is I keep to 2kg (2000ml) between treatments, so that means I go around 1l or so a day. The 500ml (or 600 if you prefer - not THAT much difference) is derived from the usual fluid loss through sweating and what the body absorbs naturally.

So you're trying to corelate two different suggestions for two different situations (one pre-dialysis, and one during)- of course that will cause confusion!

btw you think a 436 creat is hight? LOL. Mine last week was measured as 1000!

I still cannot find the original article but found my notes about it and they gave an example that if you drink 2 litres you should add ~600ml and drink that amount of liquid next day, because - according to the article - that should be the amount of liquid the kidneys still feel comfortable with "to work through". BP & weight should be checked daily and signs of water-retension should be observed. That is what the article said.

[Maxridex]

I only get to drink 400 everyday and it's really hard to control. I cheated loads of time and I know it pressurise my heart but is there any topic that can teach me to overcome my fluid problems. I feel like getting a heart disease really soon if I keep doing it.

[RichardMEL]

I still cannot find the original article but found my notes about it and they gave an example that if you drink 2 litres you should add ~600ml and drink that amount of liquid next day, because - according to the article - that should be the amount of liquid the kidneys still feel comfortable with "to work through". BP & weight should be checked daily and signs of water-retension should be observed. That is what the article said.

I think this just continues to confuse the issue.

I am talking about rules for those on dialysis - specifically hemo dialysis (because PD is different, and I guess nightly hemo also - because there is little need for fluid restrictions for those folks). However for those of us doing the usual 3x/week hemo sessions the basic rule of thumb is whatever your OUTPUT is (note, not what you drink, but what you output) per day PLUS 500ml to cover natural loss via sweat etc. The idea is only to really replace what you put out to minimise the stress on the heart and lungs from creating fluid overload - which is very serious.

Of course you also have to be careful to not become dehydrated as this can cause it's own bad consequences. Unfortunately it is a somewhat delicate balance - even more so because the dry weight which such things are taken from as a base is pretty much an educated guestimate anyway....

fluids are the hardest thing to deal with in terms of dialysis for me - without doubt.

[Romona]

I only get to drink 400 everyday and it's really hard to control. I cheated loads of time and I know it pressurise my heart but is there any topic that can teach me to overcome my fluid problems. I feel like getting a heart disease really soon if I keep doing it.

Kidney disease does put stress on your heart. Having a fluid restriction is hard. I chewed lots of gum.

[monrein]

I only get to drink 400 everyday and it's really hard to control. I cheated loads of time and I know it pressurise my heart but is there any topic that can teach me to overcome my fluid problems. I feel like getting a heart disease really soon if I keep doing it.

Try to be very very careful about how much sodium or salty foods you eat and you will probably find it a bit easier to keep your fluids down.. Not easy though, I know.

[Sunny]

Remember, the amount of fluid allowed varies depending on whether you are on dialysis or pre-dialysis. I think Kristina is still pre-dialysis and her fluid intake should be higher. I am pre-dialysis and I know that I absolutely must keep well hydrated to combat toxin build-up. We should all watch sodium intake regardless. I drink at least 3 litres of water a day and rarely drink anything else (except for 1 cup of coffee in the morning and the occasional glass of red wine). All that, and I'm still thirsty, so I chew gum and suck on mints. Of course, your nephrologist is the best guide for what is right for you and your particular medical condition.

[Hanify]

Oh GOD!  To be able to drink 3 litres a day!!  Ahhhhhhhhhhhhhhh.  Without doubt, for me the hardest part of being on dialysis is the fluid restriction.  People often ask if I'm 'allowed' to drink alcohol (I used to love a glass or 7 or bubbly) and it's hard to explain that yes, I can actually drink alcohol, but when you're on a litre a day fluid restriction, you don't go wasting it drinking alcohol.  The days of stitting with my mates drinking a few bevvies has gone - that would be my whole day's worth in one sitting ha ha.  But anyway, back to the topic!  Just don't do anything without talking to your own neph!

[Tolulena]

I have heard that there are some nephrologists recommending their PKD patients drink at least 4 liters of water a day (more if you are a larger person). This is because it's not known to harm, bar a few conditions, and because of the current clinical trials going on which are looking at blocking the action of vasopressin (anti-diuretic hormone) to stop its direct involvement in cyst growth. It worked on mice pretty well. So there is a trial on using Tolvaptan to do that and a couple recruiting to get people to drink a lot of water to minimise output of vasopressin.  My doctor said it was OK for me to do it so I do drink about 4-5 litres a day. I don't notice any water retention. I guess it is something you'd have to discuss with a cluey nephrologist.

[kristina]

Hallo, Sunny,
Yes, I am pre-dialysis like yourself.
Why should my fluid-intake be higher?
Is it not dependent on the weight/size of the person?
Or is it independent?
I weigh 59kg and I am medium-build
and the amount of liquid I drink per day is
what my kidneys manage without difficulty
and without water-retention.
You say you drink at least 3 litres of water a day,
plus 1 cup of coffee and the occasional glass of red wine,
what is your weight and size?
I am only asking because there seems
so much contradicting information
and I try to find an answer and
keep my kidneys happy for as long as possible.
Thank you.

[monrein]

I could drink huge amounts pre-dialysis because I still peed a lot although the urine was basically liquid without removing the toxins etc.  After ten months back on D I was only peeing about a third of a cup a day.  This is a very individual issue and does not depend on the size of a person.  Some people retain fluids pre-D, some do not.  BP, and salt intake and many other factors are hugely variable from one person to the next. Even on D, fluid restrictions will vary because people's stages of ESRD and function vary.  Weighing yourself every morning is a good way to figure out if you're holding on to fluids because it's not always as obvious as swollen ankles or puffy eyes.  If there's one thing we MUST realise, it's that there's simply no such thing as universal "rules" in all this stuff.  There are guidelines  and such but the range of individual differences between kidney patients is about as great as the range of differences within the "normal" population.   Also PD is different than hemo, pre-D is different than D and one year on D is different than 10 years on D. 

I think Richard already said all this so I apologize for the repetition.

[kristina]

Thank you, Monrein,
Please don't apologize! You see,
for "us beginners" it is so important
to comprehend the maze of information
and as everyone explains things differently,
there is a chance for us beginners,
to understand the real issue much better.
Thanks again.

[RichardMEL]

Oh GOD!  To be able to drink 3 litres a day!!  Ahhhhhhhhhhhhhhh.  Without doubt, for me the hardest part of being on dialysis is the fluid restriction.  People often ask if I'm 'allowed' to drink alcohol (I used to love a glass or 7 or bubbly) and it's hard to explain that yes, I can actually drink alcohol, but when you're on a litre a day fluid restriction, you don't go wasting it drinking alcohol.  The days of stitting with my mates drinking a few bevvies has gone - that would be my whole day's worth in one sitting ha ha.  But anyway, back to the topic!  Just don't do anything without talking to your own neph!

oh man I am so there with this!!!

It's funny the numbers of people who, when I explain I am on fluid restrictions, seem to assume it is only about booze... "So you can't have a lot of beer?" umm.. no I can't have a lot of ANYTHING! It usually takes two or three goes to explain it's ALL fluid.. and even stuff that you wouldn't consider "fluid" like ice cream, custard, and all that.

Yeah I would SOOO love to be able to drink 3L of water a day!! I don't think people really realise how much they drink(this is not a bad thing, btw) until you have to give it up. Without a doubt this is the hardest thing for me.. specially when workmates on a Friday want to go for after-work drinks... I have one if I'm doing well with the fluids and that's my limit, and that's not a drink - that's a bloody tease!! 

I think we need to be VERY CLEAR about the difference between pre-dialysis and during-dialysis fluid restrictions because that can seem very confusing. For me, pre-dialysis I drank pretty much anything and everything. I was told to check for fluid retention and all that but it was never an issue for me, and I was always drinking 2-3L of just water a day (not including tea/coffee/soft drinks oh and beer )and those were good, good days!! I miss them!!! 

The message to check with your neph before changing anything like this is SO important!!

[Maxridex]

My limit is 400ml a day :/ that's all

[Hanify]

Ouch.  400ml!!! I'm allowed 1 litre.  First time I've felt like that's a huge amount.  How do you do it?  That's only two drinks!  Do they make you include yoghurt/breakfast cereal milk etc in that?

[RichardMEL]

Indeed! 400ml would be well... very difficult to imagine how to keep to that. However having said that humans are amazing in what we can get used to and come to consider normal. Prior to dialysis I couldn't possibly imagine keeping to 1L or less of fluid a day!! I drank 2-3L just in water let alone tea,  coffee other drinks!! The prospect was one of the most difficult i ever faced. I guess it's a matter of will power - I imagine I could meet that limit pretty much, but it's not something I ever want to test!

My hat goes off to you.

[kristina]

Hallo, Maxridex,
Please tell me why are you so restricted with your fluid-intake?
And how do you regulate this minimun on intake every day?
Do you have a glass with 400ml liquid standing and every hour or so
you allow yourself to take a little sip?

And why is Hanify allowed one liter of liquid per day?
Is it connected with the fact that the kidneys of Hanify
are functioning a little better than the kidneys of Maxridex
despite the fact that both are on dialysis?
Or is it connected with different methods of dialysis?
I am still pre-dialysis and I am still puzzled.
Thank you for your answers. Kristina.