Update: 5/4/16: Well, well, well. It’s certainly been a long time since I posted about this. It’s a few years later (time flies when you’re having kidney failure, doesn’t it?) and fluid control isn’t the problem for me as it once was. One issue is that my body often confuses hunger and thirst. I may be hungry but think I’m thirsty or thirsty and think I’m hungry. I’m still learning to tell the difference between the two. However, I’ve pretty well trained myself to control my fluid intake by a couple methods. One popular with my fellow patients, is to take a sip, let it sit in your mouth for a few seconds, swish it around , and then swallow. That seems to satisfy thirst for a while better than gulping down a cup.
If I’m out to dinner, I tell the server or busser not to refill my glass of water. (I don’t drink soda anymore, only water) so I can keep track of how much I consume. If they keep refilling it, it’s easy to lose track. At some recent out of town trips, there was a lot of restaurant visits and I did rather well at fluid control. I was quite proud of myself.
At home, I limit how much coffee I drink to two cups max. Again, sips rather than gulps. It takes me a couple hours to drink one cup.
(I also updated updated the link to the Network 14 Fluid Control page. Sorry about that. They moved their website pages around and changed all the links!)
I hope you are having some success. If you have a trick or two to add, please do in the comments below.
Dialysis and Fluid Control
This month the ESRD Network of Texas will introduce a poster to make the point about fluid and its effects on the heart for people on dialysis. You can view it here. (En Español) Actually it’s visually quite frightening and that’s a good thing. As patients, we should be very careful about our fluid intake for many reasons. First and foremost is because we have no output. If you imagine yourself as a sink with no drain, that’s us, and that’s why it’s important to be careful how much fluid you consume. The only way to remove excess fluid is through dialysis.
I’m sure you know why you weigh yourself before and after treatment. It’s to measure the amount of fluid that needs to be removed during dialysis. You have a “dry weight” that’s the weight you should be after treatment. Any weight above that is the amount to be removed during treatment. If you have consumed a lot of fluids, there’s that much to remove. The more that needs to be removed the more stress your body has to endure in the process. The less that needs to be removed, the easier it is. The problem is finding the right amount that allows you to come off treatment with the least discomfort.
I found that I have a fluid removal maximum. If I take off too much fluid or much above that amount, I will cramp. Cramping’s not good. It’s painful and, like any pain, it’s a signal something’s wrong. You cramp because your muscles are lacking fluid. Your body needs a certain amount and it reacts violently if there’s too little. Often it doesn’t matter if I come in well above my max removal amount, taking off much above that will result in cramps. That’s because fluid removal is a function of the amount of fluid removed over time.
There’s a fixed amount of time in the treatment; generally four hours and then some. If you have 4 kilos to remove, that’s 1 kilo per hour. If you have 6 kilos, that’s 1.5 kilos per hour. If you come in at 8 kilos, that’s 2 kilos per hour. I found I can only endure a maximum of 5.0 kilos over four hours. Any more than that… CRAMPS. And I really, really hate cramps. If I come in over 5.0, I do only that or perhaps less if it’s a Monday, and I’m careful the next day so I can come in at a reasonable fluid weight and take off a reasonable amount in the next treatment. If it’s a Monday, I know I have two more treatments so I don’t sweat it much. If it’s a Wednesday, I know I have only one more day to be careful or the problem will carry over into the weekend. I try very hard not to carry over my fluid into the weekend. It only compounds the problem.
So, fluid control is also a function of the day of the week. If it’s a Monday, I’m less concerned about my fluid. I know I’ll be high because I had two days to accumulate and I have two treatments to remove it after this one. If it’s Wednesday, I get a bit more concerned. I only have one more treatment this week. If it’s a Friday, I’m out of luck. I’ve actually done a fourth treatment on Saturday because of this. I learned my lesson. So on the off days, I am really careful about my fluids.
And fluid control was really a problem for me in the first couple years. I hated feeling thirsty or dehydrated. Often after a treatment I would consume two or three large cups of water. That works out to about 36 ounces of water. For me, my maximum is 48 ounces of fluid in 24 hours, so in the hour after treatment, I’d already used most of my quota for the day. Not a good practice. In those days, it was not unusual for me to come in with 6 to 8 kilos of fluid to be removed. Those were painful, uncomfortable times with lots of bloating and CRAMPS. (did I give this enough emphasis? see my post about “hand cramps“, too.)
But feeling thirsty and being dehydrated are two different things. You may be thirsty but not dehydrated. That’s what I discovered about myself anyway. So, I started just sipping a small cup of water after treatment. I got rid of the large drink cups and replaced them with an 8 ounce graduated cup. (A graduated cup shows the ounces as lines on the outside of the cup.) When I got home after treatments, I would fill it with two or three ounces and drink that slowly. It would satisfy my thirst but not fill me with useless fluid. Likewise I used that same cup at meals. My limit was 6 of those 8 ounce cups in a day or 48 ounces. I can’t take credit for the graduated cup idea. My nutritionist suggested it and it had a significant effect on my fluid control between treatments.
Likewise, at treatment, I would arrive with a large drink to consume during the session. That cup was often 32 to 48 ounces. Sort of self-defeating, isn’t it? Simple answer, yes. Remember my comparison of the sink with no drain? Just because you’re in treatment, it doesn’t mean you can add more fluid. The objective is to remove it. Now I have an 8 ounce refillable bottle and often I don’t drink more than a couple ounces in the entire session. It also made the calculation of how much fluid to remove much easier. Now the tech doesn’t have to look at my Big Gulp and add that to the total fluid removal goal.
It didn’t happen overnight. It took a year or so and I didn’t realize it was happening. One day I was drinking more than 48 ounces a day without thinking. A year later I was drinking much, much less; all because of that graduated cup and my persistence in using it. The net result is that I come to treatment with much less extra fluid and it’s not so painful and uncomfortable removing it. Now, when I’m feeling bloated, it’s usually only an extra kilo or so. I can take that off without a lot of fuss and bother. I rarely cramp now and that’s a good thing.
One thing I stopped doing was to get the “combo” when I went out to eat. I order a small cup of water with my meal. Or if they don’t have anything but a combo, I take the cup and only fill it with about 8 oz. of liquid. That is one of my cups for the day. I don’t “upsize” any more under any circumstances! No one needs to do that and especially those of us on fluid restrictions. Getting anything more than a small drink is too much temptation to overload on fluid. Think of it this way, if you drink that large drink, that’s it until the next treatment! I can’t go that long so I stick to my 8 oz. cup.
I can’t take all the credit for my success. I can pat myself on the back for following through but Barbara, the nutritionist, gave me the cup that got me started and Bobby, the technician, made the observations about my max removal amount. So, listen to the people around you, the professionals that know a lot about treatments and precautions. They can really help but you have to be responsible for your own fluid control. You’ll feel better, dialysis will go more easily, and you’ll avoid painful cramps. (See also, my post about “Dialysis and Cramping” if you have’nt already)
If you have some ideas or suggestions for controlling your fluids, pass them along, please.
Update 10/20/12: I had a rough week last week with fluid control. So, I returned to my “sippy cup” and went in at 2 kilos of Friday of this week as compared to 4 kilos on Monday. The “sippy cup” works!
Update 9/25/12: I found this really simple suggestion for a way to enjoy but control fluid intake! Take a look at “The Confessions of a Renal Tippler”
Update: 9/19/12: I am once again dealing with this issue since I feel I lost some control of it over the last couple weeks. So, I’m raising it once again for our mutual benefit. How much fluid are you taking off with each treatment? I’ve had some readers recently complaining about “Mondays!” and when I asked, they said 5.5 and 6.0. That’s WAY too much, y’all! I get upset when my number is over 4.0! And that was the case last week. I was 4.3 and 4.4. So I went back to my “sippy cup”, an 8 oz. graduated cup, and limiting myself to two or three of those a day. I will know today in my Wednesday session, if I’m succeeding in my goal. I was pretty good on Monday because I was good over the weekend but today should be better. I really don’t like that bloated, uncomfortable, hard-to-breathe feeling. If you’re having problems with fluid control or need some remediation as I do, read on. Taking on too much fluid is dangerous and keeping it under control is important.
Updated 8/26/12: I found this pamphlet titled, “Why Am I So Thirsty?” and wanted to share this with you. It may be helpful as it explains some of the reasons you may become thirsty and then consume too much fluid. It’s all part of Fluid Control.
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Why don’t you get out of the center and on to home dialysis? You will be able to lower your fluid restrictions that way. Also, some of us on dialysis still urinate, thank you very much. 🙂
Good question. I, like many others, don’t have the option for in-home treatment. Yes, there are benefit but there are drawbacks also. But nonetheless you have to watch your fluid intake and that’s the point I was making. For some, it’s a struggle and I hope my experience helps them get control of this problem.
And even if you urinate, you have to control your fluid intake. If your kidneys are functioning enough that you can output as much as you take in, you might not need dialysis. I’ve never heard of anyone being able to urinate more than a few ounces every couple days who’s on dialysis but…
Perhaps you have some ideas about fluid control to offer. Feel free to add them.
Oh and BTW, thanks for the idea about Home V Center Dialysis V Peritoneal V other methods! LOL. I believe it would be helpful for me to explain why I do in-center versus home, at least. Give me a couple days.
I didn’t mean to put you down for your choice of modality. Everyone has to do what fits their lifestyle. I just make it my mission to remind folks that there is life outside the center, because I had to find it on my own which was a violation of my rights as a dialysis patient.
I didn’t take it as a putdown. And you’re right. There are different modalities. I’m sorry you had to find out about it on your own. In my first year, it was brought up by the center and they even brought a video cart around to the chair so I could learn about it. You raise a good point again and it’s that often dialysis patients are left in the dark. And that is exactly why I started this blog. I wish to end that. Thank you reading it and please refer others. Also, look into joining Dialysis Patient Citizens and your local ESRD Network. You have much to offer. I plan to blog about those groups soon.
Wow! This can be one particular of the most helpful blogs We have ever arrive across on this subject. Basically Fantastic. I¡¯m also an expert in this topic therefore I can understand your effort.
Feel free to add your knowledge to this blog. I’m sure it will be helpful and that’s my point about this blog. I want others to benefit from my experience so they don’t have to make the mistakes I did and probably still do. I will be blogging some more about fluid control this week based on a presentation I attended this week at the annual meeting of the ESRD Network 14. Watch this space and thanks for participating.
Thanks for your blog, the consumption of water has really been a problem-cramps are no fun.
I want to have a cramp-free dialysis session.
It took me a while to get the point about cramping. A tech finally explained to me that cramping is BAD! The center (a new one for me) doesn’t want cramping because it’s an indication something’s not right! News to me, I spend most of my first three years cramping. Now I know better. The tech also told me that I can tolerate only so much taken off and if anyone suggests more, tell them not to exceed my limit. I can take off the overload the next treatment or come in for an extra. More about fluid takeoff in another blog this week. Watch this space and THANKS for participating!
I added a blog just now about cramping. I hope you find it helpful.
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This information was well recieved It gave manygreat idea onhow to prevent excess fluid build up
Thanks and God bless you a newbi pena47
I’m glad you enjoyed it. Please come back for more. And feel free to share your experience. We can all learn something from each other.
I still have so much to learn – I was told on 29 Jan 2015 that I will be going on home dialysis by April. I am at 11% funtion – which dropped all most 10% in 3 months, during which I received 39 radittion treatments & a hormone shot after my prostate was removed in Aug 2015 – and I wonder if that caused the huge drop. Being hooked up for 10 hours a nght terrifies me – but I have to continue working, and I will be able to do that – I HOPE. I look forward to learning more from your experience.
It’s rather terrifying. I know. You have certainly been through the wringer! However, dialysis at home seems very effective for most people and allows them to work. I hope it works out well for you. Please feel free to ask questions and I’ll answer them. If I don’t know the answer, I’ll research it.
I am at the point where you were in 2012. I am having trouble controlling my “soda” fluid habit. I restrict it as much as I can but it’s not enough. I am cramping almost every treatment. Sad thing about it is that if I can really control it and drop 16 kilos I will be eligible for transplant list/surgery. I have two living donors already lined up. I just can’t get ahead of the fluid to drop the extra fluid weight I am carrying. I was at the lower weight two years ago when I started dialysis but because I was a newbie and was terrified of the cramping I kept increasing my dry weight to where it is today. I hope I can make the change like you did to become a “sipper” and lose this extra fluid. I don’t have any other complications other than the cramping. I am not bloated or showing any signs of edema and my breathing is normal. God bless and thanks for posting your blog. Joe C.
Please read the post, “Dialysis and Cramping” as it may help. Also, if you are cramping then you’re pushing the limit of what you can take off in that period. You can increase the amount of time you are on dialysis to ease the fluid draw that way or decrease how much you are taking off. I hope this helps. Good luck on getting the transplant. I hope you do. Also, see my post, “Dialysis and Transplant”
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