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Good evening, this is my first post here. May 10 I had my transplant and I'm still in pain and not walking as much as my wife(donor) today the nurse called me, my tracolimus is 19,creatine is 2.3 and potassium is on the hire side she said. 4.9 I'm freaking out and my wife is going nuts crying thinking this might be a rejection sign. I peed just 1000ccs yesterday and I know I'm not drinking as much water as before the transplant. Any advice is greatly appreciated

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Replies

  • Hi Edgar

    I had my tx 20 months ago.  The first month the tx team was tweaking my tracolimus about once a week and I was doing lab tests twice a week.  There was considerable variability in my tracolimus readings.  I was also not drinking enough water.  I drink 3 to 4 liters per day and my labs have settle down.

    I agree with everyone post to relax, tell your tx team everything, and drink lots of water.

  • Relax. You're fine. Those numbers don't seem that high for just 2 weeks out.

    Don't stress out.
  • I got my results today and tracolimus is still a bit high but better, creatine is 2.4 and potassium is 5.6 and Im taking 6mg am and 5mg pm for today to see. I just want my potassium and creatine to be normal. I can work with the tracolimus but the potassium and creatine high scare me. Both me and my wife are scare.
  • Your doctors will reduce prograf and other meds gradually over the time. They have the protocols to follow. Please ask your doctors about it.

    After they adjust your meds, the creatinine level will come down.

    As others said, drink 2-3 liters of water a day or follow your doctors's order to flush the kidney and detox the body. The key is the BALANCE. Because you don't want to drink too much water.

    Make sure to find more info on creatinine and prograf level on this website using "search" tool.

    Best wishes.
  • Hi Edgar,

    Congratulations on receiving your Tx!  The first few weeks after a transplant can be a bit overwhelming.  With a Prograf (tacrolimus-FK) level of 19, you must feel exhausted continually, I know when my level went over 10, it felt like I was hit by a bus.  You should feel better when doses of all meds are adjusted.  Tacrolimus can raise Creatinine levels and affect urine output as well.  The Tx team will "fix" issues, though it may seem like it takes a while.

    Know that, it will get better and you will feel stronger soon.  I encourage you to ASK, ASK, ASK as many questions as you wish from the Tx team and members here, It's how we all learn.  Now that you joined, you have an extra support team so, you are not going through this alone.  

    Stay Strong.

    KB(Norm)

    • Thank you, it is a scary situation but all the positive advice and the TX team are making me feel more at ease.
  • Your tactro is way too high! Being up there before it causes you not to pee yes it does!
  • What do they normally want your tac level to be? Obviously 19 is too high, and that will cause your creatinine to go up.

    Your first year is going to be filled with paranoia and these little hiccups later in your career as a tx patient won't bother you so much. Try to relax and keep hydrated. Did your nurse cut back on your tacrolimus? Sometimes it will go up like that for unexpected reasons, and sometimes it's an interaction with another drug. Make sure your transplant team knows everything you are taking....including OTC supplements.

    For the time being, and believe me, I remember how hard it was, you are in no danger so you don't really have anything to worry about. It's one set of labs (and you are going to have an awful lot more over the years and decades) and by itself only means a little.

    At one point my tacro level was 23 (and it was supposed to be about 5). That was (I think) about 10 years or so ago, maybe a bit more. And my kidney is still ticking away (it's the little kidney that could).

    Find a way to keep hydrated. I drink a lot of weak tea and sodium free club soda with Mio. I hate plain water, so the tea and the bubbles and the flavors (love Tang flavor) help me drink more.

    Please keep us posted on what you have been told to do and how your next labs are.

    Oh, and potassium at 4.9 is not that bad and not even out of range (upper level is usually at about 5.1). So again, this could be caused by a bit of dehydration and the tacro level.

    YOU ARE GOING TO BE FINE!!!!

    • Thank you so much, when I asked in the hospital about the tracolimus they said they wanted it to be 8mg tops and last week was at 6mg. Then they had me do 6mg in the morning and 7mg at night. I'm diabetic too and my sugars have been all over. I will try to drink more water and thank you for the reassurance.
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