This and That and Talk - My Transplant

@contentandwell That's a good question. Prior to transplant, I was on a fluid restriction to some extent. So after transplant, I asked my team if those rules still applied. They said absolutely no. Based on that, and the fact that all doctors will tell you to drink a minimum of 2 liters per day, I thought more would be better. And I've not read anything to tell me differently. So I thought why not double that number. My nephrologist was on board with it as well.

I do the same thing with exercise. It's recommended to exercise 150 minutes/week, so I figured I would double that as well. And everything I've read, provided I'm healthy enough to do it, it will do nothing but help me. I take the same approach with nutrition.

I don't have an easy time with this. But at the end of the day, I've gone through too much, put my family through too much, to not give my body the best chance I can do be healthy, controlling the things I can control. There's no doubt that at some point in the future, I'll get sick or have rejection, but it won't have anything to do with how I treat my body.

@mickj I think you mentioned that your transplant had not mentioned water intake. What made you realize that you needed to drink so much? It is a lot, I think I'm doing well to get my recommended 80 ounces in a day.
JK

You are absolutely right that 4-5 liters of water/day is a lot, and it's really hard to do. Based on an idea from my brother, I get a head start first thing in the morning. I drink a liter in the AM before/during meds (7AM). I then eat (includes .3 liter protein shake), exercise and drink another .5 liter. So by the time lunch rolls around, I'm nearly half of the way home. And then from lunch through dinner, I drink at least another .5 liter. Throughout the day, I sip 1.5-2 liters of homemade lemonade (water, pure lemon juice, stevia). I do my best to slow way down on the fluid intake by 8PM, as I'm not a big fan of a bunch of middle-of-the-night nature calls.

It all sounds pretty straight forward, except is doesn't include that one little life necessity called work. I have not gone back to work yet, but will be doing so shortly. That's when I'm sure I'll be fully challenged to keep it up.

I am curious. I am a transplant patient, also. 9 years ago I received a liver and a kidney. A few years back, a kidney stone was found on a scan and i was directed to drink 3 liter a day. It is not an easy task for me on many days, but I keep a pitcher of water on my kitchen counter, and work all day long to get it down. How do you manage to consume 4-5 liters of water daily? It sounds like a lot. Did your transplant team tell you to drink that much? Thanks.

Wow you really had your fair share !! How are you doing now ? I know that anti rejection meds can be harsh over time ! And my transplant was in 1998 , so back then I think went heavy on the drugs verses what they give now ... very interested in talking to you more on why and just questions since you are out even longer then myself .. and I’m working with my sisters for a a living donor ... I was wondering if you are going thru the topical skin cancer and stuff also .. thank you

No dialysis yet but I’m a stage 5 hanging in there ! Hopefully the transplant before that happens .. how did you know it was time for dialysis? What made them say it is time ? I’m hoping the transplant happens first but wondering is there are more signs ?

Hey @contentandwell I recently had a liver transplant (5 months ago). Pre-transplant, we talked about doing liver+kidney, but we opted not to go that route. My kidneys were not horrible, but not very good either (creatinine 1.7, GFR 45). Post transplant, my transplant team never said anything about bumping up liquids. They also said nothing about limiting liquids.

My kidney function has improved post-transplant, but it's still nothing to phone home about (creatinine 1.3-1.4, GFR 55-65). Certainly Tacrolimus isn't helping. But I'm only taking .5mg 2x per day, and the tacrolimus level in my body is in the 3-5 range. So any effect that it's having on my body is not going to lessen. I figure I better do everything I can to help out my kidneys. And lots of water (4-5 liters/day) is a big part of that. At least that's the way this armchair doctor sees it.

Hey @contentandwell I recently had a liver transplant (5 months ago). Pre-transplant, we talked about doing liver+kidney, but we opted not to go that route. My kidneys were not horrible, but not very good either (creatinine 1.7, GFR 45). Post transplant, my transplant team never said anything about bumping up liquids. They also said nothing about limiting liquids.

My kidney function has improved post-transplant, but it's still nothing to phone home about (creatinine 1.3-1.4, GFR 55-65). Certainly Tacrolimus isn't helping. But I'm only taking .5mg 2x per day, and the tacrolimus level in my body is in the 3-5 range. So any effect that it's having on my body is not going to lessen. I figure I better do everything I can to help out my kidneys. And lots of water (4-5 liters/day) is a big part of that. At least that's the way this armchair doctor sees it.

Well with the liver I had no clue that 20 years ago this could happen !! My Creatine level over the years though was going up a couple points every year . They tried med adjustments through out the years but that’s why I had a few set backs when they lowered it to much to compinsate for my kidneys .. so almost 21 years later here we are !! My sisters are getting tested and I will be traveling back to Mayo in a couple weeks ! My testing is done just looking for a match right now then the transplant hopefully ! Do you know the other blog name that might no more about this ? But I will definitely be on here cause this kidney this is so new to me ! Also after being a transplant recipient for 20 years you really need to take care of your skin !!! Stay out of the sun ! I have lots of topical skin cancer from all the meds also !!

I have had a total of three transplants. My first was a liver transplant in April of 1995 (age 22). My second one was another liver transplant in May 2007(age 34) due to failure of the first transplant due to unclear cause. I then had a kidney transplant in November 2012 (age 39) due to the antirejection meds taking their toll on my kidneys. I was fortunate enough to have my mom be my living donor for my kidney transplant. I am coming up on my 46th birthday this coming Tuesday (December 4). I am thankful for all my donors and being able to still be here. Prior to receiving my kidney I spent 2 years and 3 months on dialysis, which is definitely not a fun way to live.