Dear all,
I have read that many of you drink a lot more than 2 liters of water a day after transplant. Did your nephrologist advise you to do that? Did they say why? I couldn't find any literature that supports a beneficial effect of drinking > 2 liters a day.
Thanks!
My transplant team advised a minimum of 64 oz per day and said it was to "keep the kidney regularly flushed and maintain hydration levels" I would imagine it may be based on the effects of dehydration on the body overall, plus on the organ itself? Given that dehydration causes creatinine to rise, as well as cause a build-up of other wastes and acids in the body, and can lead to a clogging of the kidneys with muscle proteins (myoglobin) Keeping flush might also aid in avoiding kidney stones or UTIs? I am making guesses because no real sound reason was given when I was told to maintain my water at 64oz or a bit more.
I was told that those on dialysis prior couldn't drink much water so they need to be reminded to drink after the transplant. I wasn't on dialysis before so I haven't had a need to calculate how much I drink. It was an earlier post that had me thinking and being curious about this topic.
yes, it is different for those on dialysis, pre-transplant, and post-transplant. It may also be different based on gender, weight, the way people metabolize things. I'm sure there are many factors.
Same here I try for 3 liters a day. I have noticed when I slip below or right at 2L and get labs my creatinine will jump slightly. 1.01 to maybe 1.05
That's very interesting! I should try that for my next lab!
Yes, it will directly impact my labs. My creatinine and GFR fluctuate if I am dehydrated. It takes about 30 min for the body to process a glass or bottle of water. I try to drink 16oz before heading to the lab and take another bottle with me in case there is a wait. Sometimes it works, sometimes it does not.
My transplant team advised between 2 and 2.5 liters a day because water keeps the kidney hydrated and healthy. I've noticed that if I have been slacking on drinking water my labs results, especially BUN and creatinine will be higher and therefore my GFR will be lower.
Funny story...when i had my transplant 30 years ago, my Dr walked in with an empty 2 liter coke bottle and slapped it down on the little tray table next to my bed and said, "do you see this? You need to start drinking one of these a day of water!" I laughed at him because after a year on dialysis you train yourself to be like a camel and live off the least amt of fluid intake as possible!!! He said that he was serious to at first to get the transplant to start completely working right and then to keep the body flushed and hydrated and to assist the body to push toxins etc. out of the body. To this day, even after 30 years i still have to push myself to drink enough water because its hard to get that dialysis mentality out of your mind.
It was obviously good advice though if you are still going strong after 30 years. Well done.
Wow god bless u and ur kidney I have been 19 years with mine this year I drink water everyday but at times especially weekends I slack of. My creatine is usually 1.2 to 1.3 alot ppl say I'm lucky that my numbers r that low . Just recently when up to 1.5 I'm worried but I was also sick during that time wasnt really eating . Do u have any advice for me on what else could I do to keep maintaining my kidneys health I get really worried especially when. It comes time to see my kidney dr I would really appreciate it ...😉
Just keep doing what your doing...that is great. My creatinine runs .07 to .09. I have started on lisiniprol whichnis used for blood pressure and for maintaining kidney health when u start to have protein etc in urine. It has helped a bunch too
Thank u ..
I couldn't agree more with the comments for hydration is one of the most important things you can do for yourself - each and every day to stay and maintain your overall health, not just for the kidney. Forty years ago my Doctor said a similar thing to me as Yankcg70's did to him. That's a combine 70 years of experience between the two us..
Stay well, stay healthy and hydrate 
My transplant team had told me to drink 1-2 liters of water a day. WHY? It was said to keep my kidneys flushed and to prevent dehydration.
I know when I have been dehydrated it also effects my creatinine.
I am now 20+ years post transplant and usually don't drink that much water. During the summer I probably drink more because I live in a very dry and arid climate and need to drink more to stay hydrated.
Does anyone go to the bathroom all during the night because of all the water drinking? It breaks my sleep but I don’t have a problem getting back to sleep. Just waking up and going so many times. Any suggestions on this??
Same here, water seems to gather in my lower legs and feet during the day, and then gets removed by my kidney during the night. I believe there's also a hormone called ADH ( anti diuretic hormone) that should reduce urine production to let us sleep, but for some reason this hormone isn't released properly in some transplant patients. The technical name for excessive night time urination is nocturia by the way.
Hi, in the UK, through our excellent National Health Service NHS, we seem to be kept well informed about drinking plenty post transplant, usually between 2 - 3 litres (approx 68 oz minimum) of non caffeinated or sugary liquids each day; we must keep urine to be a light straw colour.
It is correct that generally keeping well hydrated will help to flush through a transplant kidney, and this is due to the toxic affects of the anti rejection medications that we have to take for the rest of our lives. Creatinine levels will be lower, and GFR slightly higher the better hydrated we are. The results may however also vary each time, dependant on the type of food we’ve had in the past 36 hours. Higher protein red meat, or dairy products are likely to reduce the GFR slightly, and likewise lower protein meals, or ‘plant based’ will ‘help’ to increase the GFR, and lower creatinine levels. I had my transplant in November 2018, and all is good so far.
I am curious about the transplant protocol in UK. Since you are almost two years out may I ask what meds and doses you are on? Thanks.
Hi Lisa, firstly you may know but, I must say that immunosuppressive drugs are unique to each person, and doses of each of the drugs for one person can often be quite different for another person. This can be down to gender, weight/BMI, age, blood group, tissue type, anti bodies etc. I’ve noticed some Countries also use some different drugs.
The drugs used by each clinic/Hospital may also differ depending many factors, including costs, and what each person can best tolerate. It is not uncommon to change some of the drugs as some people will respond differently to them to others. However once on any particular drug (and manufacturer), it should not be changed without medical advice.
I use tacrolimus 2 mg twice daily, which apparently is fairly low.
Also Mycophenolate 500 mg twice daily.
Prednisolone 5 mg once a day.
These are all for anti rejection.
I also have Bisoprolol 10mg for blood pressure. (You may know that kidneys control the BP).
Aspirin 75 mg once daily (to slightly thin blood).
Ranitidine 150 mg twice daily (for anti indigestion as a side affect of other drugs).
All of the above are usually higher at first, and may be altered as each persons body, and essential regular blood results change, so to avoid rejection.
Steve
Thanks! Yes I understand all the information that you described. It isn't always easy for the "right" combo of doses to be found especially in the first two years. I am glad to learn the medication of choice by transplant team seems similar there in the UK. 4mg/day of tacrilimus isn't that low actually. Do you know what the trough level they want you to be at?
Hi I’m a tad perplexed; you have asked basic questions concerning hydration, clothing etc and I have likewise offered rather simplistic facts; yet despite stating that you understand that given, you deem qualified to quantify the definition of what constitutes low dose. This is impossible without having the full range of statistics and facts available, such as historical reasons for transplant, matching score, individual bmi, antibody resistance etc.
I am fully aware of my ‘individual’ trough results, and am well within the acceptable parameters for transplant type (live transplant etc), age, gender etc etc etc, but as said these are ‘unique’ and are pointless for comparison with others.
An easy indicator of whether you are drinking enough water is the color of your urine. It will be a pale yellow if you are well hydrated.
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