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Author Topic: Minimum Fluid intake requirement question.  (Read 4375 times)
Chris
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« on: July 04, 2008, 10:03:43 PM »

Anyone know how the doctors come up with their minimum fluid intake requirement after transplant? I am told to drink at least 64 fl oz of anything without caffeine, but if I drink caffeine, double something without it. I just thought of this tonight and wonder now if my doc I see at my transplant center can explain it. I don't have high hopes on that though. I usually don't meet the 64 fl oz a day requirement, most of the time it is between 52 and 56 fl oz with my Creatinine usually at 1.4. When I was in the hospital a couple weeks ago, they were telling me to drink 4 of the water pitchers a day at home. These water pitchers weren't even 24 oz like I shoot for when I drink my Diet Pepsi decaf bottles. The pitchers look like they hold 16 oz. So the curiosity is coming over me on how they figure these numbers and does it vary person to person.
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Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
donnia
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« Reply #1 on: July 05, 2008, 09:45:34 AM »

I have no idea how they come up with the requirements.  I know my transplant team told me to stay at about 2000 ml.  I was drinking about 2400- 2800 and my TC told me to slow down.    I have heard other people are told to drink drink drink.  My surgeon really told me to just drink to my thirst.  The one time I only drank 1600 ml my creatinine went  up to 1.3.  I started drinking more... at least the 2000 and it is down to 1.2. 
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Born with one kidney 1972
Ureter re-constructured 1975 (reflux had already damaged the kidney)
Diagnosed and treated for high blood pressure 2000
Diagnosed ESRF October 2006
Started dialysis September 2007
Last dialysis June 4, 2008
Transplant from my hero, Joyce, June 5, 2008
stauffenberg
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« Reply #2 on: July 05, 2008, 10:16:16 AM »

It used to be thought to be a good idea to support function of the transplanted kidney by hyperhydration, so patients used to be advised to drink more water than their ordinary thirst would require.  However, more recently the theory has emerged that hyperfiltration, that is, too much fluid passing through the single functioning kidney which the patient has post-transplant, might be causing transplanted kidneys to wear out too fast, thus perhaps accounting for the presently unexplained phenomenon of chronic allograft nephropathy, in which the kidney fails over time even without obvious rejection.

So, as a result, the present advice usually given to transplant patients is to drink a normal amount of water according to thirst and no more.
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Chris
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« Reply #3 on: July 05, 2008, 10:38:04 AM »

Forgot to write in my letter that while in the hospital hooked up to an IV, the cret. was down to 1.2. 1.2 only happens when hooked up to an IV though. I never have been able to get below 1.2, but I know part of that is due to meds I am on.
The hyper fluid intake theory of allograft failure seems plausible to me, but I don't have to worry about that part with me having trouble getting fluid and food in. Just have to worry about why it has stopped due to that cause.
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Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
donnia
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me and my donor Joyce

« Reply #4 on: July 05, 2008, 10:41:23 AM »

Makes sense stauffenberg. 
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Born with one kidney 1972
Ureter re-constructured 1975 (reflux had already damaged the kidney)
Diagnosed and treated for high blood pressure 2000
Diagnosed ESRF October 2006
Started dialysis September 2007
Last dialysis June 4, 2008
Transplant from my hero, Joyce, June 5, 2008
KT0930
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« Reply #5 on: July 06, 2008, 08:02:46 AM »

I had a transplant in 2002, and was told the same thing as Chris regarding doubling up if I drank something with caffeine, but I was told that the minimum should be 100 ounces of non-caffeinated drinks. With my transplant this year, I was told 64 ounces. My creatnine has been between 0.7 and 0.9 since about a week after my surgery.

I have no idea how they come up with the amount you should drink, but your creatnine will be based on much more than just hydration:

The condition of the kidney you received
The meds you're on
Your activity level
Your body size

The higher the last two, the higher your creatnine will naturally be, regardless of whether you have had a transplant or not.
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"Dialysis ain't for sissies" ~My wonderful husband
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I received a 6 out of 6 antigen match transplant on January 9, 2008. Third transplant, first time on The List.
pelagia
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« Reply #6 on: July 06, 2008, 10:21:01 AM »

I think it's important to observe your own body when it comes to deciding how much water to drink.

Is your urine light yellow in color?  While the color can be affected by food you eat and some vitamins, generally a pale yellow urine color is a good thing.

Other things that can happen if you are not properly hydrated - constipation, headache and problems with temperature regulation, especially this time of the year when it's hot and perspiration can deplete the body of plenty of fluid.

My brother-in-law developed kidney stones from drinking too little water, which is not a good thing since he has PKD.  He was eating a lot of vegetables that are high in minerals such as kale, spinach and broccoli, which we know are limited on the pre-dialysis and dialysis diets.

I think we have to listen to the docs and to our bodies.

Stephen's NP asked him to drink more water when his creatinine started to climb a little soon after the transplant.  It has bounced around since then, but stays between 0.7 and 0.9 and he is almost to 2 months.




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As for me, I'll borrow this thought: "Having never experienced kidney disease, I had no idea how crucial kidney function is to the rest of the body." - KD
Chris
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« Reply #7 on: July 06, 2008, 12:52:54 PM »

pelagia,
What do you mean by body temp? How we feel or the temp reading from a thermometer?

Ever since renal failure I usually feel cold even in the summer. I need to be out in the sun or needs to be above 80 to feel warm. One in a room that is below 80, I can get the shivers from wind blowing. Transplant center and other doctors know about it, but don't say a thing.
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Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
pelagia
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« Reply #8 on: July 06, 2008, 01:44:25 PM »

I was thinking more in terms of getting overheated.  Perspiration helps to keep our body temperature regulated and if you stop perspiring, you are more likely to suffer from heat exhaustion or heat stroke.  The marine lab I work at sends us messages every summer to remind to drink water while we are working out on the boats in the hot sun. 

Don't know about the always being cold thing.  Are you anemic?
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As for me, I'll borrow this thought: "Having never experienced kidney disease, I had no idea how crucial kidney function is to the rest of the body." - KD
okarol
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« Reply #9 on: July 06, 2008, 01:48:28 PM »

Jenna was pretty good about drinking the recommended 3 liters of water per day for the first year, but now (18 months post-op) she drinks when thirsty and with meds and meals.
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Admin for IHateDialysis 2008 - 2014, retired.
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Chris
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« Reply #10 on: July 06, 2008, 07:42:05 PM »

I was thinking more in terms of getting overheated.  Perspiration helps to keep our body temperature regulated and if you stop perspiring, you are more likely to suffer from heat exhaustion or heat stroke.  The marine lab I work at sends us messages every summer to remind to drink water while we are working out on the boats in the hot sun. 

Don't know about the always being cold thing.  Are you anemic?

According to lab results, Nope
Just underweight for my age and size.
Logged

Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
Chris
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« Reply #11 on: July 06, 2008, 07:50:41 PM »

So far, most of you been told to drink more than me and I have a hard time getting up 64 oz a day and that seems a lot to me. 3 liters a day would make me feel like doing nothing but hag around a bathroom area if I could get that much in. When I was younger though, I had no problem drinking that much and more. Even when I ride my mountain bike  I still find it hard to get in 64 oz a day, but I'm not riding from 11 am to 3 pm. The sun would be to bright for me.

I hope I can get an answer from my transplant center Thursday or at least one of them can look it up. I'm not getting my hopes up with them though due to past experiences.
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Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
Roxy
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« Reply #12 on: July 06, 2008, 11:00:40 PM »

My transplant center told me 64 ounces of fluid a day. However, the way they have always judged whether I was hydrated enough was by my BUN. Consequently, whenever my BUN is higher my creatinine is higher as well. Also, it has varied between medications. I have never really been able to drink 64ounces a day, but have found that with cyclosporine and prograf I needed to drink more to keep my BUN down, whereas with rapamune I haven't been drinking very much each day and my BUN has been the lowest it has ever been since my transplant.
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Chris
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« Reply #13 on: July 06, 2008, 11:09:49 PM »

My transplant center told me 64 ounces of fluid a day. However, the way they have always judged whether I was hydrated enough was by my BUN. Consequently, whenever my BUN is higher my creatinine is higher as well. Also, it has varied between medications. I have never really been able to drink 64ounces a day, but have found that with cyclosporine and prograf I needed to drink more to keep my BUN down, whereas with rapamune I haven't been drinking very much each day and my BUN has been the lowest it has ever been since my transplant.

That is how my center and other local doctors  judge if I am hydrated enough. I have only been on CellCept and Prograf that has been lowered over time, but it hasn't changed the level of the BUN and Creatinine looking at old labs from previous years.
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Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
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