This and That and Talk - My Transplant

@threerrr3 I have not had a second transplant but they do keep a very watchful eye on my numbers for any kidney problems, and I am supposed to drink 80 - 100 ounces of water or fluid a day to keep them flushed.
I used to participate in a different forum and I know that some people had kidney problems following a liver transplant, but I have no idea if they had been instructed to drink as much fluid as I have been. One person said that after her liver transplant they told her that she would probably need a kidney transplant down the road but my transplant center has a more optimistic outlook and is very pro-active.
It is something that I try to not think too much about though.
Have you also been told to drink a lot of fluids?
JK

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 !!

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.

That’s good to know yes plenty of water .. well 20 years ago they had me on high doses of tacolimous 4mg twice a day so yea that did not help matters at all ! So now we are at 1 mg twice a day and it seems to be doing ok hopefully my creatine comes down some I was averaging around 2.4 but in the last year it is at 3.5 so it has taken a huge swing the wrong way ...this is why I am on the kidney transplant list ... so yes if you try and keep your kidneys flushed out it will help save them .. happy to hear your liver transplant was a success!! I’ll be 21 years out in March and liver is basically doing great !!

threerrr3, In my case the kidneys failure was acute, and caused by my complications with ESLD. It was an emergency situation that called for dialysis to keep me alive until I could get a liver transplant. My kidneys did not respond so that is why I had a kidney transplant at the same time. It is called hepatorenal kidney failure. It does not sound like your situation. I will add that my new kidney is working perfectly.

I want to share the following links with you, and your wonderful sisters: Kidney Donation from the Donor Side.
https://connect.mayoclinic.org/discussion/kidney-transplant-from-the-donor-side/
Here is a discussion about and by living kidney donors. You will meet @mauraacro who started the discussion based on her own experience as a living kidney donor. And an especially exciting new post is by @cleverusername: I think that you will feel his positive energy jump off the page as you read what he has to say about living donation. I encourage you to ask any questions about the actual living kidney donation process to these experts.

Here is the link to the Transplant Pages - https://connect.mayoclinic.org/page/transplant/
You will find materials for transplant recipients as well as living donors.

Let me know if these are helpful. I welcome any questions.

@threerrr3 20+ years post liver transplant ... You are an inspiration. You've clearly been doing a whole lot of things right. Congrats on your journey.

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.

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

@threerrr3 The thought of needing a kidney is very frightening for me because at my age I suspect I would be on the low end of candidates. Hopefully things will continue to be OK, not too much off the preferred range.
JK