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Author Topic: Water, water everywhere, but only one and half to two litres a day to drink!  (Read 10144 times)
Mr Pink
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« on: August 03, 2012, 11:29:50 AM »

The year was 2002. Lizzy was celebrating 50 years on the throne, Gee Dubya was on the American throne, short course speed skater Stephen Bradbury was “doing a Bradbury” in Salt Lake City, and I was gently floating down the Nam Song river, deep in the heart of the People’s Democratic Republic of Laos.  In my hired tube, with the sun belting down from above, the gorgeous karst scenery of one the world’s backwaters slowly passing by, three bottles of Beer Lao tied together with a bottle opener floating behind, and with yet another floating bar waiting around the next bend, I didn’t have a care in the world! Ah, those were the days...

Fast forward to 2012, and I am trying to come to terms with the idea of limiting my daily fluid intake to between one and a half to two litres a day, not such a good prospect when you're used to the first pint on a Friday night jumping out of the glass and straight down my thirsty throat without even touching the sides! It seems that I’m putting too much strain on my ailing kidneys if I expect them to soak up any more. With what little kidney function I still have remaining, I’m going to stick to this restriction as though the standard of my life depends on it, which it does.

For the past month, I’ve been keeping track very closely as to what disappears into the vast chasm that makes it home about an inch under my nose, and have calculated my intake to be around 3 litres. Since my boozy days more or less ended about 5 years ago, I’ve been drinking much less overall than I used to, but I’m still not quite where I need to be, which is as far away from the fridge as possible, it seems!

So what’s the secret to surviving what I’m anticipating is going to be the hardest aspect of life on dialysis? Drink less, obviously. But how? What tips and suggestions can you kind folks offer someone who has been a bottomless pit for amber fluids, and fluids of various other colours for more years than I’d really like to admit?   
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cattlekid
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« Reply #1 on: August 03, 2012, 03:49:33 PM »

 Switch to hard liquor, if you still want the occasional drinky-poo and dr. allows it.

Get smaller cups.

Only have beverages with meals.

Get the small size drink when eating in restaurants.  Don't let the waitress refill your glass.

I admit it sucks, but you'll get used to it.
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AnnieB
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« Reply #2 on: August 03, 2012, 05:44:47 PM »

How about ice chips? Hard candy? Sugarless gum? Are these allowed? And do they help? I'm not looking forward to this either.

Anne
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MommyChick
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« Reply #3 on: August 03, 2012, 08:50:12 PM »

Everyone here seems to have the right idea...  :2thumbsup;
I love ice chips, sour candy, freeze a bottle of water & try only drinking from that as it slowly melts. It will help in limiting you throughout the day :) also mouth wash helps.
Good Luck!
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~ Hello All, My names Marna ~

- 1995 - 12 yrs old found out my kidneys were both failing
- 1996 - Dec. 3 I received my 1st kidney transplant at age 13, after 7/mths on the waiting list
- 2005 - In Aug. transplant failed after 9.5 years, had to have a nephrectomy due to being very ill & massive hypertension
           - End of Aug. 1st time on dialysis
- 2006 - Had my fistula placed & ready to go
- 2010 - My little Miracle was born 6/mths into the pregnancy, weighing 2.4 lbs & 13.25 in long
          - Found out my PRA is 100% & I have antibodies that CAN'T be decreased
- 2013 - Oct. 2nd  *** I finally received my kidney!!! ***
          - Dec. 3rd I had 3.5 parathyroids removed, due to them interfering w/my new kidney.
Traveller1947
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« Reply #4 on: August 04, 2012, 04:01:34 AM »

Love those images of a a lazy day on the river...

For me, the best way to deal with fluid restriction is to drink only water, usually in the form of shaved ice or ice chips, with the occasional frozen cocktail to keep things interesting.  All the best to to you.
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Mr Pink
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« Reply #5 on: August 04, 2012, 05:11:26 AM »

I like the idea of frozen cocktails. I'm not too sure about switching to hard liquor, as appealing as that may seem. A few years ago, whilst in the beautiful Tuscan town of Sienna, I made it half way through a long island iced tea and a massive hangover had already kicked in! It's been downhill ever since! I kept to 2 litres yesterday, and I was reasonably active. Drinking mostly water is going to be a real drag. I've had to give Coke the wide berth, sadly. I guess all we can really hope for is the invention of bionic kidneys so we can all start guzzling again!   
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KAF454
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« Reply #6 on: August 04, 2012, 04:01:06 PM »

Try hydrating foods instead of drinking. Oranges, grapes or cucumber slices satisfy thirst and hunger without blowing your daily fluid "budget" all to hell.
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PD catheter inserted 11/2011
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PD efficacy tanked 12/2012. CVC inserted for hemo.
Elected to stay on hemo 01/2013. (10.5 hours per week instead of 8 hours every night? No contest!)

Today I will not worry unless the animals start lining up 2 by 2.
gothiclovemonkey
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« Reply #7 on: August 04, 2012, 05:12:00 PM »

i have found that jolly ranchers really help me Duriing treatments, i eat the heck out of them. They last a lot longer than regular hard candies, and they are sour enough to make me salivate.

frozen grapes
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jbeany
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« Reply #8 on: August 04, 2012, 05:33:29 PM »

glm already posted my fav tip - frozen grapes - although I'll add any frozen fruit to the list.  Cherries and blueberries are good as well.  Sucking on something icy that has a minimal amount of fluid helps a lot.  For real desperation, I've even put spoons in the freezer - the ultimate no fluid popsicle.  (I did 4 months of IV nutrition, no food or fluids allowed.)
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Rerun
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« Reply #9 on: August 04, 2012, 06:40:53 PM »

Maybe I missed this tip:  SALT  ------  Don't eat any.  Salt makes you thirsty.  Really watch your salt and you will not be very thirsty at all.  Use Mrs. Dash for flavor.  I put it on everything.  If you eat a small fry ask for no salt added.

Do not eat "No Salt" it is pure potassium. 

You should gain only 3% of your dry weight between dialysis runs.  But, I think you are still pre because 1 and 1/2 liters a day sounds like a crazy lot to me. 

Good Luck.  Limit your salt and you won't have a problem.

I'm writing this as I had bacon yesterday and am dying of thirst right now.  I know what to do it is doing it.   :waving;
 
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Mr Pink
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« Reply #10 on: August 05, 2012, 11:11:01 AM »

Some good tips there. The frozen fruit idea I quite like. I used to make frozen boats out of oranges. I'll definitely give frozen grapes a go. I definitely like the sound of sour sweets. Avoiding salt has something I've more or less managed to do for some years, except when grazing on crisps. Since giving that nasty habit up, I've dropped quite a bit of weight and feel much better for it.

For the last couple of days, I've stayed under 2 litres, which hasn't been too bad. Lowering it further to a litre and half will be tough. I couldn't imagine what it would be like to have an even greater fluid restrictionthan that. I hope i don't have to find out. I guess I've got a lot to learn. Come summer, I can see myself being camped in front of the air conditioner, or soaking in a backyard pool.

Not being able to have a large slurpee at the end of a hot day is going to suck. I might squeeze a small one in on special occasions!   
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AnnieB
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« Reply #11 on: August 05, 2012, 11:58:08 AM »

frozen boats out of oranges? what are those?
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AnnieB
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« Reply #12 on: August 05, 2012, 11:58:49 AM »

frozen boats, I mean...
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Mr Pink
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« Reply #13 on: August 05, 2012, 02:14:21 PM »

Peel the orange, and open the pieces without separating them. They're not really boats, we just called them that when they came out of rhe freezer. An orange makes 2 boats. They'd go down a treat on a hot day.
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Rerun
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« Reply #14 on: August 05, 2012, 04:45:10 PM »

Oranges are high in potassium.

In the summer if you sweat a lot..... you can have your slurpee.  If you sweat it off then you can drink some.  I love summer.
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Mr Pink
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« Reply #15 on: August 07, 2012, 03:51:24 AM »

Oranges are high in potassium.

In the summer if you sweat a lot..... you can have your slurpee.  If you sweat it off then you can drink some.  I love summer.

Ah, yes they are.It seems that I have a lot to learn. I didn't know about sweating, either. If I sweat like a hooker in a church confessional, then I can consume more fluid?

How is it exactly that they calculate how much fluid I can actually have? I've asked them and I've heard a variety of answers. I was told yesterday that once on dialysis, I'll have a daily allowance of 500mls, plus the 2 and a half kilos worth of fluid they will take off me during treatments. So 500mls plus 1250mls = 1750mls. Does that sound about right? And if I sweat it out doing exercise, a bit more than that?
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monrein
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« Reply #16 on: August 07, 2012, 03:59:11 AM »

Your fluid intake will depend also on your fluid output.  Some still pee quite a bit (especially at first) on dialysis but that often diminishes over time.  I was down to about two teaspoons a day.  I restricted fluids to about 750 ml per day not counting the fluid that would be in my food.  The point to remember is that too much fluid to be removed during D can cause you to feel like crap and beyond as BP drops during the removal process.  Also, all the extra fluid must be pumped around by the heart which really stresses it.
This is definitely one of the toughest things about D and most of us struggle to control the fluids.
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
Mr Pink
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« Reply #17 on: August 08, 2012, 03:20:47 AM »

Your fluid intake will depend also on your fluid output.  Some still pee quite a bit (especially at first) on dialysis but that often diminishes over time.  I was down to about two teaspoons a day.  I restricted fluids to about 750 ml per day not counting the fluid that would be in my food.  The point to remember is that too much fluid to be removed during D can cause you to feel like crap and beyond as BP drops during the removal process.  Also, all the extra fluid must be pumped around by the heart which really stresses it.
This is definitely one of the toughest things about D and most of us struggle to control the fluids.

I couldn't imagine not peeing. That is going to seem really strange. I guess that's when the kidneys have well and truly packed it in. Right now it seems that if peeing was a sport, I could pee for Australia! In fact, I'd probably have picked up 2 gold medals by now, for peeing off both the springboard and the highboard, elevating the once mighty green and gold above the sporting powerhouse that Kazakhstan now seem to be! And if there was synchronised peeing, I'd probably be in with a chance there too!

I'm really not looking forward to this aspect of life on dialysis. I could live on a litre and a half a day, as I've been proving to myself these past few days. Any less than that is going to be tough. Feeling like crap and beyond doesn't sound too appealing, so I guess this is something I really need to focus on.
Hopefully I'll have some residual function, as one of the posters here has suggested, but I'm going to prepare for the worst anyway, hoping for the best.   
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AnnieB
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« Reply #18 on: August 08, 2012, 06:51:46 AM »

Oranges are high in potassium...

But you can still make frozen boats with clementines.
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Southpaw
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« Reply #19 on: August 26, 2012, 09:52:59 PM »

Lemon drops
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Whamo
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« Reply #20 on: October 03, 2012, 06:15:30 AM »

I've heard you can get away with drinking more fluids on the CAPD program.  Is this true?
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Grumpy-1
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« Reply #21 on: October 03, 2012, 08:15:33 AM »

Mr Pink - we should get together.  I'm on PD and need to drink more water - but can only get 12oz a day down.  Grumpy   Yes you will stop peeing at some point, but look at this way - you can drive for 8 hours and not stop for a pee break   :rofl;
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malaka
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« Reply #22 on: October 08, 2012, 10:01:38 AM »

The reason you are limited is that you do better on dialysis if they don't have to remove too much liquid during sessions.  I've learned this the hard way. 
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Whamo
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« Reply #23 on: October 31, 2012, 06:34:58 AM »

You want to avoid eating any marijuana cookies on dialysis days.  I find I drink too much (not booze) when I eat a magic cookie.   :rofl;
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mogee
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« Reply #24 on: November 01, 2012, 12:18:50 AM »

I am on home nocturnal dialysis five nights a week.  Because I am thoroughly cleansed by the process I don't experience abnormal thirst.  I typically remove a litre of fluid per treatment, but sometimes I need to drink fluid while on dialysis to avoid falling below my target weight.  Although I have no food or fluid restrictions I still avoid drinking too much.
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