fluid restrictions

[MooseMom]

I am a very thirsty girl, and knowing that I will have to limit my fluid intake once I start dialysis is one more reason that I am finding all of this so overwhelming.  I understand why there are restrictions, and I understand that said restrictions are probably different for each patient, but could you all tell me how you know how much fluid you are allowed to have each day?  Does that allowance fluctuate according to time of year, amount of exercise or other variables?  I understand the consequences of taking in too many liquids, but I would like to have more specific information.  For example, does your doctor/nutritionist say, "you may drink one cup of water per day." or something like that?  Thank you for your replies.

[Harvey Wells]

Fluid restrictions depend on several things.  Some on dialysis continue to have residual kidney function and make urine.  Depending on your output, you may be able to have more fluid intake. Sweating does remove fluid and that would effect the amount you would consume and remove.  Too much build up of fluid is hard on your heart and your body.  Most who do NxStage or PD are not as fluid restricted as those in center, mainly because you get the fluid removed more frequently.  Fluid consumption was a big problem for me when I was in center.  I have ZERO residual kidney function so every ounce of fluid I drink has to be removed by dialysis.

[jbeany]

The cookie cutter guideline amount that the docs like to throw out is 1 liter of fluid a day.  This includes all fluids that you drink, as well as fluids in foods like soup, jello, ice cream, watermelon, etc.  In theory, it's a reasonable guideline.  Reality, however, is another story.  Some patients don't stop producing fluid even when their kidneys stop clearing toxins.  They don't retain fluid, so those patients can drink as much as they want without a problem - other than having to constantly battle with the dialysis techs who want to take off fluid weight for everyone, even if the patient doesn't need it.  Many patients still retain some urine output when they start dialysis, but as their kidney function worsens, they have to tighten the restrictions.

Personally, 1 liter per day was more than I could handle when I was on in center D.  It was a fine amount for the single day off, but with the extra day over the weekend, I had to limit my intake even more, since my body did not react well to removing more than 2.5 L per run.

[MooseMom]

"Reality" is exactly what I want to hear about!

[monrein]

When I did 3 days a week in center I did less than a litre a day, closer to 500 ml.  When I went to 5 days a week I could do about 750ml.   I think you have to wait a bit and see how much fluid you retain depending on how much residual function you have.  So individual really and cookie cutter is only good for cookies...not renal patients.
The thing to remember too is that our own limits shift and change depending on a variety of factors.

[RichardMEL]

The standard "formula" they use here is 500ml+whatever you output is ideal. The goal really though is to not put on more than 2kg(2L) of fluid between treatments, hence the ~1L/day figure (obviously it's going to be less over a dialysis weekend when you have one extra day to account for). In practice they are usually OK if you have another kg over.

There is also another train of thought that goes that you can have I think 2% of your body weight in intake between sessions. So, I weigh 78kg, which means ideally I should only have about 1.6L on between treatments (3% over weekends). So if you're a bigger person you can tollerate putting on more. If you're smaller... you're out of luck.

In the end though it comes down to what you can handle taking off. For example some people can handle having 5L taken off during a hemo session, while others go nuts at over 2 - so there's a bit of leeway that only you can discover through (bitter) experience - because everyone iS different.

Oh yes, about time of year stuff - during the summer we are told we can have a "little" bit more. Just how much is never really defined though.

What I do is I weigh myself at home several times a day to get an indication of where I am at and that way I can also keep myself reasonably on track(I know the error rate between the hospital scales and mine). What I also do is keep track mentally of how much I take in - so a small coffee is ~200mil, or a can of soft drink would be 375ml, and so on - and that is also a way to keep a rough track of what you're taking in.

Before I started D I was drinking 1.5-2L a day ONLY of water, then more in tea, coffee, soft drinks, juice etc... probably 3L or so all up - I love to drink!! This has been one of the hardest things to get used to. Over 3 years later well.. I manage it pretty well though there are times I just want to go to town with the ice water!

Good luck!

[sullidog]

I'm one of those patients that can still pea a river and not restricted, although like mentioned already the techs have this thing where they still want to pull off fluid that isn't even there. Before they found out I still produced urine one of the things I did was put what I drank in a smaller 8 ounce cup then it was dehydrating to me so then they lifted the restriction because they could tell by my heart rates that I didn't have enough fluid on me.
Troy

[MooseMom]

OK, so let's say that you are going to your very first dialysis session.  How is it determined how much fluid to pull off?  Do you tell them how much urine you are producing a day and then they extrapolate from that?

[jbeany]

They guess.  Sad, but true.  That's part of why the first month is usually the hardest.  They just keep pulling until you start crashing.  If you are lucky, you get a center that has a crit line and other equipment to make the process a bit more scientific, but most centers don't have the expensive equipment or anyone trained to use it.  My first run, the doc, who hadn't seen me in the month before I actually started, had set a dry weight goal based on the weight I was at his last appointment - about 2 kilos below that.  I had lost weight in that month, so I entered the building lower than what my goal weight was on paper.  So they just set the machine to a random amount, and tried it.  You aren't going to get a set dry weight for the first couple of weeks, though.  If you have been retaining fluid through your whole body for months on end, it takes quite a while, and a number of treatments for the fluid to shift back out.  I didn't think I was retaining anything because my ankles weren't swollen.  My ankles didn't show any fluid, but there was plenty in other places.  I left most of the first 5 or 6 treatments feeling like my skin was loose!

[Rerun]

I'm having a hell of a time getting fluid off.  This weekend I only put on 1.8 but .8 of that was in my face and it did not come off.  This is making me nuts!  Something has got to change.  I have another ultrasound on Monday the 8th and then see my vascular surgeon.  This all started with my last fistulagram where he did 2 angioplasties.  The next day my face was swollen.  AHHHHH it is so frustrating!

                                   

[JennyGiggle]

rerun that sounds dreadful!! hope it gets sorted!

I was told 1L a day but I find that I need to go just under that about 750-800. When I am at work and the building is really warm that is really the only time I can up it to about a litre. My restriction started off a bit higher than that about 1.2L but it quickly got reduced.

[sullidog]

It was weird, my first dialysis session was in the hospital, I had a folly in so they didn't need to take off, at my first session at my center they took 1 kelo off in 4 hours, I didn't feel nothing I was fine, but the second day they did it again and I crashed.
Troy

[cookie2008]

My first session they did not take any fluid they only ran me for an hour and a half, the next treatment they ran me for three hours, then they started with my dry weight and I still produce urine, now that I am on Nxstage I am on no restrictions.

[MooseMom]

Thanks everyone for the replies.  OK, I can live with them "guessing".  I know that it takes some time to get into a routine and to know what's what.  I just want to be prepared.  I've never had any swelly ankles, but I guess it's certainly possible that I have some swelling in other places that aren't so evident.  My butt is still non-existent.  Luckily, I am patient and will work with everyone to find what is right for me.

I like the idea of Nxstage and fewer fluid restrictions.  I had an elderly aunt who was on dialysis; the last time I saw her, it was August in Mississippi (the definition of "hot and sweltering"), and she told me that the worst part of dialysis was the fluid restrictions.  That stuck in my mind, but I have to keep reminding myself that I am not her...