I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Padster on August 01, 2006, 10:27:29 AM
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Hello its me again.
Recently, due to my weight gain I have begun cutting down on my water intake. I now have just a pint and a half of water a day and half a pint of milk. I must say, I feel thirsty ALL the time, and whether this is psychological I don't know, but my mouth sure feels dry. I haven't started on dialysis yet and was wondering how much you guys drink each day. I can happily suck on ice cubes but I get a little annoyed when I find out that even these must be taken into account with my water allowance. Jeez, are there ANY pleasures in life left......?
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Before I was diagnosed with this ESRD, I was one of those people who believed in the 8 glasses per day, and even carried around one of those bottles that look like a miniature office water cooler!
So you would understand that this new restriction was very difficult for me. What I do is that I hardly ever drink plain water as such. Since I have to be restricted in liquids, I make sure I get things I particularly like. Any water would be if I wake in the middle of the night and take a few ounces.
I find that ice-pops are very helpful. one is only 3 ounces and it is refreshing, and since it is usually frozen, I take a little while to finish one.
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Padster, do you still urinate? That would have alot to do with how much you can drink. I am on lasix, and still go some, maybe 2 liters, so I am fortunate. In between sessions, I gain 7 pounds of "fluid", which for now, they say is a good thing. I don't monitor intake of fluids YET. Joe
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I never really have had a problem with fluids, when I was on in-center I had to always remove 4 kilos in-between sessions which is almost 9 pounds of fluid. I try to limit my intake, but I do love Coke-cola. That is my one vice, I don't drink alcohol, I don't smoke, I don't drink coffee, I don't use drugs. So my weakness is the Coke. I have tried to drink sprite, and other clear sodas, even root beer, but I just love Coke.
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Epoman - I saw you mentioned 'Root Beer.' Why is it that they say we need to drink clear liquids, but yet, I see Root Beer listed as possible liquids to consume. Do you know why?
Thanks
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I usually come in 3-6 kilos over depending if a weekend or not. I tend to drink twice that amount though but workout to sweat the extra out. Have been known to come in over 9 kilos though on occasion. >:D
The overall limiting of fluid never use to make sense. I still have old "propaganda" around somewhere that suggests that a 200 pound person only drink the same amount as a 100 pound person. ??? That never made any sense to me considering a larger person carries more muscle and therefor has and needs more water to operate those muscles. Being the body is some 60-70 percent water already.
However I see that more and more units are moving to the trend of percentage of bodyweight as fluid gain between treatments. 3% during weekdays and 5% gain over weekends.
Most clear sodas are low in phosphorus. Some rootbeers are also low. Colas are high in phosphorus.
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I used to be always 2kg up and 2.5kg over the weekend. Never been over 3kg up. But for the last 7 months I have never been more than 1kg up. Sometimes zero up. The less to remove the less painful my leg is. On the unit if you do not pass urine they say try to sick to 500mils a day. I do not know any renal patient who could do that. But with the heat lately we can drink a bit more because of the sweating.
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Epoman - I saw you mentioned 'Root Beer.' Why is it that they say we need to drink clear liquids, but yet, I see Root Beer listed as possible liquids to consume. Do you know why?
Thanks
Only some rootbeers are safe as some brands add phosphate. I found even some Orange Soda's also have added Phosphate and Cream Soda some brands do as well.
So I know dietitians usually say "clean sodas are phosphate free" but it has since been discovered that that is not particularly true. Just get into the habit of reading all labels. That is the ONLY way to know for sure.
Pepsi (what I loved and had to give up but now I am into RootBeer) and Coke and all colas are high in Phosphate as well as Milk is.
I used to be always 2kg up and 2.5kg over the weekend. Never been over 3kg up. But for the last 7 months I have never been more than 1kg up. Sometimes zero up. The less to remove the less painful my leg is. On the unit if you do not pass urine they say try to sick to 500mils a day. I do not know any renal patient who could do that. But with the heat lately we can drink a bit more because of the sweating.
I don't pee at all but still they say I can drink 1000ml a day but even that I have a hard time ... I drink a little over (oops)!
Drinking the least amount possible would be preferable but I have a hard time because for years I was drinking about 3L a day because I was told to when I had my transplant. I got so used to it. And on PD I was still peeing so I didn't slow down. Then at the end of my PD I was holding in fluid because I no longer peed but the dialysis center did not tell me to watch my intake until I started Hemo. So for me it was sudden .. and I couldn't adjust. I am getting better though.
The dietitian told me to measure all my drinks .. but that gets hard at times when I am eating out. Not like I am going to bring a measuring cup with me everywhere I eat and drink ..
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You're not supposed to drink cola's? I totally LIVE on diet coke (or Tab, yes, I know I'm the only person left in the world that drinks Tab). No one has mentioned to me that I can't drink cola yet, but, I'm not on dialysis yet, either. This'll kill me. Mallory
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You're not supposed to drink cola's? I totally LIVE on diet coke (or Tab, yes, I know I'm the only person left in the world that drinks Tab). No one has mentioned to me that I can't drink cola yet, but, I'm not on dialysis yet, either. This'll kill me. Mallory
As long as you are not on dialysis yet then you probably still have urine output, am I right? As long as you have this then your kidneys probably still filter out enough Phosphate to be able to still drink your cola.
I have been told that a person's kidneys filter out about 75% of the phosphate they take in in a day. So a person without kidneys has to depend on their phosphate binders and dialysis for this. I am not sure how much dialysis takes out however. Maybe someone else can answer this.
I know it is hard but given the consequences ... I used to still drink Pepsi and Milk a LOT until I met a girl who suffered from Calciphylaxis (http://www.phosphoruscontrol.com/HY/Default.aspx), which is a result of hyperphosphatemia (http://www.ccmtutorials.com/misc/phosphate/page_08.htm). I did not know that could happen! After that I have been very good with my diet and do not drink colas anymore or milk. You can still have it but just not as much and when you do have it .. you must take your phosphate binders! Everyone is different however, so you may still be able to drink all the cola you want given that you take a phosphate binder. It all depends on your own body. Good luck.
Here is a PDF on Calciphylaxis (http://medicine.ucsf.edu/housestaff/Chiefs_cover_sheets/calciphylaxis.pdf).
Here is a PDF on what nurses should know about Calciphylaxis (http://www.hdcn.com/anna_ce/295a/295a.pdf).
Here is a news article on potential complications of dialysis (http://www.cnn.com/HEALTH/library/DA/00092.html) that mentions it as well.
I have found this link to be amazing and have added it onto my own site: Patient Education Tool (http://www.phosphoruscontrol.com/RE/PatientEducationTool.aspx)
I, myself, usually go into dialysis with anywhere from 2kg on me to 5kg on me. I have 0% function in my failed transplanted kidney
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Epoman - I saw you mentioned 'Root Beer.' Why is it that they say we need to drink clear liquids, but yet, I see Root Beer listed as possible liquids to consume. Do you know why?
Thanks
Not ALL root beers. A&W is the only one that I know of and I don't know why it is acceptable.
Padster, I drink my water ICE COLD. I drink less that way.
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Epoman - I saw you mentioned 'Root Beer.' Why is it that they say we need to drink clear liquids, but yet, I see Root Beer listed as possible liquids to consume. Do you know why?
Thanks
Not ALL root beers. A&W is the only one that I know of and I don't know why it is acceptable.
A&W and also Mug Rootbeer. It is because they don't add phosphate into it as others do.
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Cola, coke and sars are also high in potassium, not sure exactly how much. I usually put on 3-4kgs, sometimes more sometimes less. The excessive thirst is due to the biochemical imbalance caused by renal failure. YOU CANNOT DRINK IT AWAY!! I am constantly thirsty, and I have found its best to drink drinks icy cold (unless its a hot drink). I either have ice in cold drinks, or I fill up a 250ml measuring cup with cordial, juice, or water and put it in the freezer for about 1-2hrs. It goes all slushy. Its very refreshing, pity I cant drink them all day. I also buy 70ml ice tubes, but Ive found them way too sweet so they dont really help, that is why I freeze my own drinks.
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My son's clinic has advised him to take his own cup to the restaurant and use it and that way he can measure more easily. (Some dedicated environmentalists have started doing that too so you won't stand out, if that matters. ;)) His old clinic recommended snacking on frozen grapes! I froze them--and I ate them! He wouldn't...
Fluid is a real struggle, or has been for us.
Mom 3
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I tried the frozen grape thing too but I prefer them not frozen I think. I think the best thing to drink is water. Although we cant really drink our thirst away, surely water will releive it a bit better than other things.
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If I watch my salt/sodium intake I'm not that thirsty.
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My doctors have allowed me 700ml per day. I often go over that because it´s impossible to live in this heat and drink so little! Although I really try to not drink too much. Unlike Rerun, I love ICE COLD drinks and drink more that way so sometimes I just drink room temperature water so I won´t drink too much. But as Rerun said, if you reduce your salt intake a lot, you´re not that thirsty. I often gain 3 kilos between sessions and then my doctors give me hell. I´m 5`9" tall (1 mt. and 75 cm,) and therefore much bigger/taller than Brazilian women but my doctors don´t seem to take that into consideration.
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I am still urinating.
Over the last two days I have been restricting myself to 500ml of water and 250ml of milk. I have found it very hard and I think I will probably allow myself a bit more as long as I still have urine output. As I am not on dialysis yet, do you think it would be ok to extend the water allowance to 1000ml? Just to let you know, this is a self-imposed restriction and no doctor has recommended I cut down on water yet. I am doing it to try and get to grips with fluid retention.
Best wishes,
Padster
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I would live things up while I have the chance. God knows once you start dialysis, you be restricted enough!
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I am still urinating.
Over the last two days I have been restricting myself to 500ml of water and 250ml of milk. I have found it very hard and I think I will probably allow myself a bit more as long as I still have urine output. As I am not on dialysis yet, do you think it would be OK to extend the water allowance to 1000ml? Just to let you know, this is a self-imposed restriction and no doctor has recommended I cut down on water yet. I am doing it to try and get to grips with fluid retention.
Best wishes,
Padster
You need to discuss this with your doctor :o!! Fluid retention may have little to do with how much or what you're drinking; it may be a symptom of your particular disorder/disease, or the sodium in your diet. Or maybe you need a diuretic? My husband has PKD and is not yet on dialysis. He is on a low sodium, low protein, low phosphorus diet -- lasix twice daily, bicarbonate of soda twice daily, two BP meds, and Extra Strength Tums with food. He has to drink lots of water to keep his urine very dilute because PKD kidneys work better if they are filtering dilute urine. Most days he consumes more than 1/2 gallon of fluids - decaf coffee, Northland brand cranberry juice blends over ice, Sierra Mist Free over ice, and lots of water. On rare occasions he has a diet cola. The amount you should be drinking depends on your individual medical condition, and your diet, and your medications. Pin your doctor down and tell him you want to know this information NOW. In some conditions, like PKD, what you drink and eat can affect the progression of the disorder, and restricting fluid intake is one of the worst things you can do.
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Man If I ever gained 3 kilos or more I would be yelled at.
Bad for your heart when there's to much fluid and then when it gets taken out it hard on the heart too. Well that's what the doc said
I usually gain 1 to 2 kilos sometimes 0.5
I drink 0.5l - 0.7l a day.
I use to find it hard and was always thirsty but if u fight it mentally evenly u won't even notice it anymore, well I stop noticing it.
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Man If I ever gained 3 kilos or more I would be yelled at.
Bad for your heart when there's to much fluid and then when it gets taken out it hard on the heart too. Well that's what the doc said
I usually gain 1 to 2 kilos sometimes 0.5
I drink 0.5l - 0.7l a day.
I use to find it hard and was always thirsty but if u fight it mentally evenly u won't even notice it anymore, well I stop noticing it.
That is really good. I'm impressed and will try harder.
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I am not good with my fluid but I am not the worst neither. With no kidney function left I still am allowed to drink 1L (1000ml) but usually drink 1500ml ... weekends I am up 4kg.
But I am not as bad as some people who come in with 5kg on them or even 7kg (my unit will only take off a max of 5.5kg in one sitting).
But if you have kidney function and are NOT yet on dialysis do NOT restrict your fluids yet unless your doctor has said so!!
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I am not good with my fluid but I am not the worst neither. With no kidney function left I still am allowed to drink 1L (1000ml) but usually drink 1500ml ... weekends I am up 4kg.
That's pretty impressive for someone with no kidney functions at all. I usually drink somewhere around 2000 to 2500ml a day, depending on how readily available I have access to something to drink.
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Oh O, Angie now you're in trouble. "Drinking as much as a normal person".
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Ice is my life!
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I agree with black I am not yet on dialysis and have pkd and i have been told to drink two /three litres a day . I am going to drink as much as I can til I need dialysis as I think the fluid restrictions that you all talk about suck! and I know they are not to far off for me !
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Oh O, Angie now you're in trouble. "Drinking as much as a normal person".
Bah when I was healthy I used to drink 4L per day ;) lol
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Oh O, Angie now you're in trouble. "Drinking as much as a normal person".
Bah when I was healthy I used to drink 4L per day ;) lol
WOW! I don't drink that much, even when it's over 100 F and im sweating buckets.
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Oh O, Angie now you're in trouble. "Drinking as much as a normal person".
Bah when I was healthy I used to drink 4L per day ;) lol
WOW! I don't drink that much, even when it's over 100 F and I'm sweating buckets.
It was a transplant. They TELL you to drink lots. They told me at first a certain amount and I thought "this is CRAZY!!" but it wasn't as hard as it WILL be the next time .. as I didn't have to go from drinking hardly anything to drinking an ocean (you know what I mean)!!
After my transplant (I was at a children's hospital in Toronto) they would wake me every hour telling me to drink a full glass. Let me tell you,... after awhile I wanted to yell at them to shove that cup of koolaid up their ... la la la la la
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When I had my transplant, my Nephorlogist said "drink when you are thirsty." That is what I did. I'm a big water drinker. Oh, and milk. I'm not much on Pop.
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It was a transplant. They TELL you to drink lots. They told me at first a certain amount and I thought "this is CRAZY!!" but it wasn't as hard as it WILL be the next time .. as I didn't have to go from drinking hardly anything to drinking an ocean (you know what I mean)!!
Wait a sec, weren't you on dialysis right before you got the first transplant? How come you didn't have to make a big transition in your fluid intake?
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Wait a sec, weren't you on dialysis right before you got the first transplant? How come you didn't have to make a big transition in your fluid intake?
Well you see, I still had one of my original kidneys when I was on dialysis (PD) for 2 months. I needed dialysis because the kidney function was below 5% but I still didn't have to worry about how much I drank. Even so ... it was pure hell having to drink THAT much that they require when you first get a kidney transplant!
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When I got the transplant I had to drink 4L per day. On dialysis I could do that no worries and then some, but after the transplant I didnt have the constant thirst anymore. You need to drink at least what your putting out though, so you really do need to make an effort. I have found keeping a 1.25L bottle of water in the fridge encourages me to drink alot more, and instead of opening the fridge for food, I just drank the water and kept filling it up. Even helped in winter too. If the drink is there ready, I was more inclinded to drink it.
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When I had my first transplant I had my first boyfriend already. Ryan would pick me up and I would hop in the car with my 1L container I would refill about 3 or 4 times a day at 7-11. I would be sipping on that thing for 16hrs of every day. I drank a lot and kept my kidney hydrated.
But now that I have to watch my drink intake on hemo .. I am not doing so well. I like to drink lots! I have done that for 15 years! I drink over my limit of 1L every day now :(
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When you say 7-11, do you mean you drank soft drink all day?
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7-11 is a convenience store or delicatessen, isn't it?
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7-11 is a convenience store or delicatessen, isn't it?
It's a convenience store, yes.