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  • I'm not a kidney transplant, but I may be in a few years. Luckily, my wife tested as a match for me (1% chance!), so I am lucky there.

    But I had a double lung transplant 9 years ago at Duke. So have been on anti-rejection for a long time, which is hard on kidneys. My creatinine went to 2 in a short time, BUT it stayed close to that for about 6 years. maybe up to 2.3. For the last 2 years, it has risen to 2.7-2.9. I still feel great, can do my hard 180 minutes of exercise every week, and have almost zero urinary issues. Maybe I need an extra hour of sleep now.

    Just saying all this to let you know that staying in the 2's is no death sentence, by any means. Hope that helps!

  • I have had a k transplant for almost 17 years.  My creatnine is usually around .8 but has risen as high as 1.5 due to infection or lack of hydration or other illness or medication.  It is usually stable but will at times fluctuate.  

  • Sort of depends on what the cause of the elevated creatinine was.  I know of a few that had issues and their creatinine was over 2.6 and after the issue was treated, their creatinine fell below 1.5.  One was severe dehydration, which was remedied after a few days of IVs.  The other was an occluded vein to the kidney that required surgery and recovery, but that recipient now has a steady 1.1, down from 3.2.  Are you concerned about your own CR level?

    • It's gone up unexpectedly to 1.8 after being 1.2 to 1.4 for the first 16 months. I'm getting my blood drawn again on Monday which is a week after the 1.8 test. I'm sure they can fix this right?

      I mean I hear about people in the 2s or higher getting successfully treated & even people with little or NO urination being successfully treated! I'm urinating a LOT & it's crystal CLEAR so that's not the issue. It's just that they need to reverse this Creatinine you know?

      • I got to agree with DavdG here.....chill out.  Creatinine levels are a snapshot in time and NOT the instant read of kidney function many believe it is.  This number is affected by so many things that Tx teams are more concerned about trends like a steadily rising level, rather than a stable elevated level.  Some of the affecting factors are:

        • Hydration - The most often culprit of high readings, make sure you are drinking enough, especially in the week before blood work.
        • Medication - meds can mess with levels and you might simply need an adjustment
        • Other reasons include heavy exercise, diet, illness rejection and....oh ya stress, so chill

        Allow the Tx team to do the  worry about the cause and the biopsy is a quick painless procedure and will determine if a rejection episode has begun.  This may not be your first bump in the road, you will gain emotion armor with each surpassed hurdle, it's not always smooth sailing with a Tx.  Try to stay calm while the team figures out what is happening, do you really have any other choice?  Here's hoping this issue is resolved soon and you return to your "normal" level, whatever that is.

      • Deep breaths...

        No need to get worked up over one test. 1.8 3 weeks in a row? Then maybe we have some evidence of a new baseline. I hang around 1.3 4 years after transplant. But... I had a 1.9 once! My tac level was too high. I actually had a lot of trouble controlling my tac level, with resulting fluctuating creatinine, as I am an athlete and my workout load fluctuates a lot. This is why I changed to Belatacept, and have a perfectly steady creatinine now. Prior? It was kind of all over the place between 1.3 and that high of 1.9. So for some people it can fluctuate a lot. 

        If you were solid at 1.3 and jumped to 1.8 (over multiple tests) then a biopsy may be ordered. If some sort of rejection issue was found, it would be treated, and often the original baseline is returned to. If you had jumped to 2.4 they would likely not be waiting a week to retest. Take your cues from their response and urgency....

        So chill. You are going to have this thing for 20+ years. As time goes on, you learn the art of "measured responses" to unexpected news. 

        I say all this having been so obsessive over every result for so long. A waste of time and stress. We learn. I turned 50 with this kidney and feel stronger than ever.

        • Thanks David. If it does get to the point where I need a biopsy what kind of treatment do they usually give to bring the Creatinine down?
          • If you had a biopsy *and* some level of rejection was found, the treatment would be some anti-rejection med pulses (a couple big doses) including steroids that would need to be tapered back down over time. This would be similar to your high med dose during and immediately after transplant (some folks are not aware they had a mega "induction" dose when first put under for surgery, and typically a different set of drugs that what you take daily). This can often reverse rejection and return kidney function, and thus creatinine, to normal levels.

            A biopsy, or just a continued high creatinine, could indicate signs of antibody mediated rejection. To test, your blood might be sent to the blood bank for antigen testing. That is, have you developed antibodies to human cells. This is less typical and harder to treat, but even here there is a treatment (i,e. same process used to wipe clean your immune system before a non-matching transplant).

            These are course descriptions obviously, and I am not a Doctor (although a scientist)

            But first things first. You are jumping ahead in this scenario. Chances are you have a bad reading, or a reading distorted by benign factors.

            Chill (I know it is hard...we all do) 

            • Thanks David but I'm hoping I NEVER need that because I got a great living donor negative crossmatch kidney from someone 15 years younger than me!

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