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    • First, few words about Creatinine levels. These numbers fluctuate with regularity, affected by hydration, medication, illness/infection, rejection and even stress. Transplant teams use this reading to identify trends (steadily rising or falling) over many test results and not as an instant-read of kidney function. Trying to manicure creatinine levels to a supposed "normal" level is a fool's errand.

      Though there is a connection between Tacrolimus dosage and Creatinine levels, without a dose adjustment the fluctuation is most likely caused by another factor. The 12-hour rule should be adhered to on blood draw days, that is, be sure the blood draw is performed 12 hours from your last dose (sooner = higher reading, later, the reverse.) This may account for the difference in readings. Good Luck

      • My tac level is taken exactly after 12 hours my doctor has also done scanning and Doppler of transplanted kidney it is normal but one thing I was very nervous and couldn't sleep before night, the flight journey wasn't good .

        • Again, many factors can affect this number, even the hormones released by stress and exhaustion, If these levels continue to rise, that would prompt the Tx team to investigate further. I am not a doctor, and that is where your best advise lies. 

  • I had a kidney transplant 4 weeks ago my creatinine levels are good but not great, doctors say I’m doing well, but I always feel tired. Is this common.

    • Feeling "tired" could be caused by many factors including; medications, PTSD post surgery, nutrition, and as you suspect kidney function. Your doctors saying you are doing fine would lessen the likelihood of rejection and diminished function, suggesting to look elsewhere. It is very early on into transplant life and it may take a while to adjust to the new "normal." At times, the combination and high doses of our medications (like tacrolimus) can also produce fatigue.

      It would be best to review your lab work results with your team for clues and investigate this through elimination to determine the possible causes, as imbalances will be easier to identify. Push for answers, you owe it to yourself and your donor to make this new life as good as it can be.

      • Thanks

  • My 6 years old son had a kidney transplant 2 years ago. He has struggled with infections otherwise he is fine. I am just worried for him because he soo young. He is on tacrolimus, prenesilone and cellcept. I feel he has too young to have a combination of these strong drugs. I am thinking of talking to his doctor to at least drop one. Am I being paroniod. Side effects of these drugs gets me soo worried. Anybody with a kidney  transplant 6 years old?

  • I am four years out this week from my transplant.  My wife was the donor.   The combination of CellCept, prograf and prednisone was causing a lot of skin cancer, and earlier this year I had to undergo 5 MOHs surgeries in a 2 month time span, the last surgery nearly took my ear off.  The transplant team decided to take me off CellCept.  They were considering substituting with Seralimus, but instead decided to see if the prograf and prednisone could suffice alone.   Now 3 months off the CellCept, my creatinine level is 0.8 with no trace of antibodies.  The prednisone (5 mg daily) has caused a degradation in my tendons and osteoporosis.   I tore two major tendons in my right rotator cuff and because of the osteoporosis, the ortho doc doesn't think surgery would be successful.    Anyway am very thankful I never had to go under dialysis.

  • Back to Michael Thomas Payne's original question.  I am 9 weeks out from my kidney transplant.  I needed more help from my parents than your daughter would (because I have a child and my husband was my donor, so someone needed to run the household while we were both recovering) but based on my experience, I would estimate that she will need your hands on help for about 3 weeks.  This excludes any lifting she may need to do and maybe driving, depending on how long she's on pain meds.  I was off prescription pain meds about 3-4 days after I came home from the hospital (was in hospital for 5 days) and was back to driving at 2 weeks

  • My daughter is 17 and has Alports. She will need a new kidney at some point . Will me or my wife need to give up work to care for her after the operation? 

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