Post your fluid restriction

[BASSMAN]

Out of curiosity and to get a handle on what fluid restriction really means for someone on dialysis.  I am asking that you post the amount of fluids that you are restricted to in a day.  Preferably in ounces.  I will have to learn to convert metric to the english.

I do know that a 5th of whiskey is 750 ml  and a liter would be 1000 ml 

[jbeany]

A liter and a half a day, officially.  That's about 50 fl. oz.  I usually don't drink that much, though, at least on my off days.  My hands are the first to swell when i start retaining fluid, and not being able to hold onto things drives me crazy.  Anything over a 2 L gain, and I can't make a fist.

[MiSSis]

I try to keep my fluid intake to around 40 oz or less per day but since I'm on PD for over 12 hrs. per night, I don't have much of a problem with fluid retention.

[flip]

Mine is 1500 cc but I usually exceed it because I don't retain any fluid.

[BASSMAN]

Mine is 1500 cc but I usually exceed it because I don't retain any fluid.

Are you on dialysis at this time?  HD/PD?  Do you still have urine output?

How is this possible? 

Please reply if you feel comfortable sharing, thanks.

[stauffenberg]

With respect to your worries about fluid restriction, Bassman, you may have a long period of time when you require dialysis to remove toxins from the blood but still do not yet have to have fluid removed, since you may retain some or all of your urine output for a while after starting dialysis.  This will make it easier to ease into the fluid restrictions, which may be imposed gradually, not all at once.

For my first five years on dialysis I had no fluid restrictions since the volume of my urine output remained normal.  It only dropped to zero because some idiot nephrologist prescribed for me an anti-hypertensive medicine known to damage the kidneys. He reasoned: "Well, if you're on dialysis, your kidneys are gone anyway, so what does it matter?"  After seven years in medical school he could not seem to understand that there are varying degrees of renal failure, and that my residual renal function and urine output was precious to me!

When the urine output goes to zero, the restrictions are quite severe and difficult to live with, especially for patients who are diabetic, since the chief symptom of diabetes is severe thirst!  One of my nurses tried to live for just one day on the 1.5 liters of fluid allowed for dialysis patients and found it impossible.  She had to confess she had used up her total by noontime.

Before renal failure, I had lived for a while in a third world country where it was necessary to drink only bottled water, so I knew exactly how much water I normally drank per week: 27 litres.  So when I had to cut that down to 10.5 litres on dialysis, you can imagine the stress.  I adhered strictly to my diet and never ate a gram of salt, but I still found myself having trouble falling asleep nights because of the maddening thirst.  But in my case the issue was made worse by diabetes, so if you are not diabetic, you should have an easier time.

[twirl]

I still urinate some and do not gain much between treatments but my neph told me 50 ounces when the time comes.
I got upset and he wanted to know how much more I wanted to drink?
I have read to have 32 ounces and then measure your urine for 24 hours and add that to the 32 ounces.
I can not drink as much as I used to and it is hard.... My neph may assume that I am on 50 ounces but....... unless I am sick..I over drink.
Stauffenberg----- that SOB neph, I treasure every drop of urine ... I know it will not continue forever.

[Adam_W]

When I was in-centre, my restriction was 1500ml, but now that I'm on daily dialysis, I don't really have any restrictions, which I'm not complaining about.

Adam

[KT0930]

My "official" restriction was 50 ounces a day, but I did PD and still had urine output, so I didn't pay much attention to it and rarely had swelling.

[Ang]

500  mls  a day ,  no  urine  output,haemo  ,usually  put on  2-3  litres  between  runs
 i  just  love  to
even  if  someone   it  wouldn't  help.

[petey]

When Marvin was in-center hemo, his fluid restriction was 36 ounces/day.  Now that he's on home hemo, he can have more, and he loves it!  Basically, he was told that on home hemo, he can drink more -- no definite restriction -- as long as he doesn't go "hog wild."  He went so long on fluid restriction in-center (12 1/2 years) that he adjusted to it long ago -- never liked it, but did adjust.  Now that he's home hemo, he drinks more, and he's very happy with that!

His urine output is zero -- and has been for years.  When he was in-center, his typical weight gain between treatments was 2-3 kilos (treatments 3 x week) -- exept over the week-end when he would go in on Monday with 3-4 kilos.  Now that he's on home hemo, his typical weight gain is 1 kilo (treatments 6 x week).

[angellady07]

Mine is 48 ounces. I'm still trying to adapt and many times I fall short. I don't know why but I seem to do the best on the weekends. Unfortunately, I do retain fluid. I have to stay fairly close to the mark or I'm in trouble.

[meadowlandsnj]

Out of curiosity and to get a handle on what fluid restriction really means for someone on dialysis.  I am asking that you post the amount of fluids that you are restricted to in a day.  Preferably in ounces.  I will have to learn to convert metric to the english.

I do know that a 5th of whiskey is 750 ml  and a liter would be 1000 ml 

Mine is 32 ounces per day but I usually do about 40-46 ounces a day taking into consideration that some foods contain more liquid than others.  It is hard and it sucks.  I can deal with any other aspect of ESRD but the fluid restrictions are the worst, IMHO.  Sometimes I just want to drink  and drink and drink.  Thirst is a normal human condition, it is something that humans, even the most primitive of our ancesters had.  Thirst is a something every animal including humans have.  You can't shut it off.  It's like hunger, breathing, ect.  I wish more people would understand this especially dialysis workers and doctors. 
There has to be a better way.  If I could do hemo at home every day I would because of less restrictions.  My place refuses to offer it.   

Donna

[BASSMAN]

Thank you for your replies!

I tried to do 48 oz just as a test and was unable.  Respect to those that can do it!!

[RichardMEL]

Mine is 500ml plus whatever I output which is between 100 and 200ml's... however I usually make it about 1 litre (1000ml) and 2kg change between treatments... which makes weekends difficult!

[lcamanini]

Mine is 48 ounces. I've just started losing my urine output in the past 4-6 months (can't remember when it really started to go) and now I'm down to about zero so I stick pretty close to my restriction.

[thegrammalady]

i've never been given a specific restriction. i generally keep my intake between 32-64 ounces a day. depending on the day and what's going on it's sometimes less. i usually weigh in somewhere between .5 and 1.9 from where i weighed out from the last treatment. i've lost 15 pounds since january so dry weight doesn't really count for much. i go by the weight changes from treatment to treatment. i very seldom show any puffiness. (i'm not holding my breath, but this works well for now)

[flip]

My tonic works for me and I never gain between treatments. I usually gain during dialysis due to the saline.

[Ken Shelmerdine]

Mine is 1500 cc but I usually exceed it because I don't retain any fluid.

Are you on dialysis at this time?  HD/PD?  Do you still have urine output?

How is this possible? 

Please reply if you feel comfortable sharing, thanks.

The % measurement of kidney function is misleading as it is only a measure of toxin filtration and doesn't take account of urine production and maintenance of haemoglobin levels. It is therefor epossible to have a low GFR and high fluid output.

[spacezombie]

On PD I can drink almost a normal amount, I don't really have to watch it too much so long as my blood pressure is normal. I usually end up drinking about 40 oz or so a day. If I drink too much, I use the higher PD solution to pull off the extra fluid.

[angela515]

When I was on hemo I was only supposed to have 20oz or less a day. Then on PD I could really drink what I wanted because I was on the machine everynight.. I am sure if I drank gallons I would of retained obviously... so on PD it's petty much drink what you want but with a conscience eye.

Now i'm 1 yr, 3 months, 8 days post transplant... and have to drink 2L+ everyday to keep my kidney hydrated. 

[flip]

Ken,

That's probably why I feel so good after dialysis. I just get cleaned with no fluid pull off.