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Author Topic: How much do you drink?!  (Read 7571 times)
Beth35
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« on: March 20, 2011, 10:28:51 AM »

So although this is my second time on dialysis, I am forgetting a lot of things.  It has been twelve years so my memory is foggy.  How much do you drink in a day?

I'm reading we should only be having two cups of liquid in a day!  Seriously?!  How can you survive on that.  I am so thirsty.  What happens in the summer when it's hot? 

What do you do to help that thirsty feeling when you can't drink.  I don't recall having that much trouble the first time around.
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Found out I had kidney disease when I was 15.
Started dialysis when I was 20.
Got a kidney transplant when I was 25.
Kidney failed at 37 and I began my second journey on dialysis.
-Lady Noir-
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« Reply #1 on: March 20, 2011, 01:46:47 PM »

Ice, glorious ice!
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Expose yourself to your deepest fear. After that, fear has no power, and the fear of freedom shrinks and vanishes. You are free

..Nik..

Fiancee to Mike
Mikes 'history'....
Born September 12 1983
Seizure July 2003 [Unrelated to kidney]
Diagnosed with 'Polycystic Kidney Disease' July 2003 (Wrong diagnosis)
Diagnosed with  IgA Glomerulonephritis April 2004
On active transplant waiting list 2006
Hyperparathyroidism developed gradually
Parathyroidectomy May 2009 (Affected kidney function)
Hospitalized for hyperkalemia June 2009
Catheter inserted June 2009


Started CAPD June 2009
Stared APD September 2009

ABO Incompatible transplant 01 December 2010
Donor = Mikes father Greg
lew11walk
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« Reply #2 on: March 22, 2011, 12:08:20 AM »

Don't know how people on dialysis survive without water!!!
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How about buying trendy swimming goggles for yourself
Des
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« Reply #3 on: March 22, 2011, 01:07:53 AM »

Well as far as I know it is
(output) + 500ml  That is what my input amounts to.

I know for the ones with a 0% output it is 1000ml in 24h.    (4 cups)

But please check with your doc. Then you know exactly what is right.

I like my spray bottle. (when it is a very hot day) :beer1;
« Last Edit: March 22, 2011, 01:10:06 AM by Des » Logged

Please note: I am no expert. Advise given is not medical advise but from my own experience or research. Or just a feeling...

South Africa
PKD
Jan 2010 Nephrectomy (left kidney)
Jan 2010 Fistula
Started April 2010 Hemo Dialysis(hate every second of it)
Nov 2012 Placed on disalibity (loving it)
Henry P Snicklesnorter
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« Reply #4 on: March 22, 2011, 05:03:45 AM »

.
« Last Edit: October 22, 2013, 03:02:24 PM by Henry P Snicklesnorter » Logged
Rerun
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« Reply #5 on: March 22, 2011, 09:03:15 AM »

I'm allowed 1 liter a day.  So that would calculate to 2kg weight gain between treatments.  3kg over the weekend.  Sometimes I do a little more...... :o
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tyefly
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This will be me...... Next spring.... I earned it.

« Reply #6 on: March 22, 2011, 10:30:03 AM »

I think it all about the person and what type of treatment...as said before..   some people put out more and work more and they can drink more.... I dont believe that there is one size glass fits all...   

I do Nxstage and I drink as much as I want ....  I never think about fluid amount.... I only take of .25 to .5 k at a time....  I dont eat much salt with my diet....

So you should develop what works for you .....   So you dont have to take much fluid off.....  Hopefully you can drink as much as you want.....
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IgA Nephropathy   April 2009
CKD    May 2009
AV Fistula  June 2009
In-Center Dialysis   Sept 2009
Nxstage    Feb 2010
Extended Nxstage March 2011

Transplant Sept 2, 2011

  Hello from the Oregon Coast.....

I am learning to live close to the lives of my friends without ever seeing them. No miles of any measurement can separate your soul from mine.
- John Muir

The clearest way into the Universe is through a forest wilderness.
- John Muir
Beth35
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« Reply #7 on: March 23, 2011, 05:53:52 PM »

I am on hemo and I still urinate.  I am finding this all so overwhelming.  I don't know how I did this for five years the first time around. :thumbdown;
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Found out I had kidney disease when I was 15.
Started dialysis when I was 20.
Got a kidney transplant when I was 25.
Kidney failed at 37 and I began my second journey on dialysis.
Des
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« Reply #8 on: March 23, 2011, 11:00:55 PM »

I am on hemo and I still urinate.  I am finding this all so overwhelming.  I don't know how I did this for five years the first time around. :thumbdown;

I would go as far as to say the

output + 500ml is your best option until you get to a doc.

So measure how much you pee just for a day or two to get an average, add 500ml to that and Bob's your uncle.
 
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Please note: I am no expert. Advise given is not medical advise but from my own experience or research. Or just a feeling...

South Africa
PKD
Jan 2010 Nephrectomy (left kidney)
Jan 2010 Fistula
Started April 2010 Hemo Dialysis(hate every second of it)
Nov 2012 Placed on disalibity (loving it)
MooseMom
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« Reply #9 on: March 23, 2011, 11:13:32 PM »

I remember that before I knew much about dialysis, the idea of having to restrict fluids shocked me.  I also didn't know you stopped urinating.  I don't like the renal diet, but I cope with it and have pretty much gotten over the resentment of it.  I've coped with the pills and the tests, and while I do admit to feeling fear about having to start dialysis, I think I'm as prepared as a person can possibly be.  I don't anticipate a problem with self-cannulation.  But the one thing that I think I'd have a lot of problems with would be restricting fluid intake.  I honestly don't know how I will be able to do that, and that is one compelling reason that I want to do D at home.  I'd gladly turn my basement into a makeshift hospital if it meant that I could drink what I wanted.  Everyone has their limits, and this is mine.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
Beth35
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« Reply #10 on: March 24, 2011, 05:39:41 AM »

See I hate having to measure everything I drink and keep track of it all.  The same with food.  I hate having to look at labels and start adding up how much phospherus and potassium I have had in a day.  It is a pain in the butt.  I am so used to drinking a lot too and now since I can't I'm feeling very hungry.  But then I can't eat what I want to eat and so I feel like I always have this hungry feeling and I hate it.

If I could do D at home I totally would.  I am single though so I have no one to help me. :(

Dialysis kicked my butt yesterday and I'm feeling a bit cranky.
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Found out I had kidney disease when I was 15.
Started dialysis when I was 20.
Got a kidney transplant when I was 25.
Kidney failed at 37 and I began my second journey on dialysis.
cariad
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« Reply #11 on: March 24, 2011, 10:54:50 AM »

I remember that before I knew much about dialysis, the idea of having to restrict fluids shocked me.  I also didn't know you stopped urinating.  I don't like the renal diet, but I cope with it and have pretty much gotten over the resentment of it.  I've coped with the pills and the tests, and while I do admit to feeling fear about having to start dialysis, I think I'm as prepared as a person can possibly be.  I don't anticipate a problem with self-cannulation.  But the one thing that I think I'd have a lot of problems with would be restricting fluid intake.  I honestly don't know how I will be able to do that, and that is one compelling reason that I want to do D at home.  I'd gladly turn my basement into a makeshift hospital if it meant that I could drink what I wanted.  Everyone has their limits, and this is mine.

I think if you asked any dialysis veteran what the worst part was, they would say fluid restrictions. It is just torture to be thirsty and not able to drink. I don't remember a single diet restriction from when I was a child, in fact, I doubt I had any because I just stopped eating entirely. However, I remember the panic of fluid restrictions after all of these years. The film Food, Inc. brought back so many horrifying memories, it took every ounce of energy I had to not burst into tears when the woman describes her child on dialysis, where he ultimately passed away. And I come on here and I wonder why, why did he have to die like that??!!, couldn't they have given him longer dialysis and let the little guy drink? There is simply nothing like needing a drink and having it kept from you - it feels like you cannot breathe.

Ick, now I've upset myself. Sorry for the outburst everyone.
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KrazeeBrod
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« Reply #12 on: May 28, 2011, 09:25:51 PM »

I agree that the fluid restriction is a real pain in the ass (forgive the language). I was told 4 cups of fluid per day plus however much I still urinate.  I have lately not been urinating as much as before, so it is going down and that is a huge problem for me.  But... it can affect my life, so I do it.
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