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Finding out you now have CKD due to the meds

So my lung transplant team has set up an online medical records called MyChart in the past few months.  That way patients can see test results and their medical record.  And through MyChart, I found out that I have CKD (chronic kidney disease) stage 3.  No one has ever told me this before.  I called my transplant coordinator to check and she said it's true and due to the immunosuppressant drugs.  I take prednisone, prograf, and myfortic.  My dosage of prograf is pretty high for some reason (4mg in morning and 4mg at night).  So I'm wondering if a lot of other people have this and if so, how do you manage?  I do drink as much water as I can yet my creatine and bun are still high.  I don't want this to get worse.  I do little things that are supposed to help it such as eating cinnamon and eat healthy.  I don't know what else to do.  I'm almost 4 years post double lung and liver transplant.

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  • Oh my goodness, Patty, 1.2? I'm not sure how you would be rated as Stage 3. My Creatinine went right up to 1.9 after transplant, and stayed between there and 2.1 for 7 years! I was 8 years out as of yesterday. I'm only on 1 mg (2 mg 3 x a week) in the morning, 1 mg at night. My trough is like 5.

    My Creatinine is now at 2.5. I just did my full workout this morning, that I've been doing for 4 years now (lost 30 lbs total). I am more anemic than I had been, need an extra hour of sleep at night now, but still feel great every day. Forget about the numbers. Of course, watch them, but go on how you FEEL. Somebody else might get a kidney transplant at 2.5. I see it in my future, but I'm going for my six-month and we're going to talk about Belatacept replacing Prograf. Almost every one's Creat. goes down once they start that, but not many lung patients are on it, mostly kidney.

    I use stinging nettle, 100% cranberry juice, and ceylon cinnamon to help stay stable Good luck, keep exercising, nothing is more important than that!

    • Maybe because my bun is also high?  My GFR is considered in the stage 3 area.  Wow!  That's very little prograf.  It's good to hear that you've been able to keep your kidney function stable for 7 years.  Thank you for your input!  I'm not sure what stinging nettle is but I'll look that up.  

      • My last BUN was 34 and GFR was 26. I guess it affects people differently. Stinging nettle is just an herbal thing, readily available on Amazon. ceylon cinnamon is different from the Cassia cinnamon contained in most commercial bottles. I just came back from Duke, and am going to keep pursuing a kidney transplant at Hopkins before I need dialysis. My wife is willing to donate, so even if she isn't a match, they do what is called a 'paired donation'. ie someone else has a similar situation, and our living donors are matches for the other recipient.

        • I guess so.  Ah, I see.  If it's an herb then I doubt my transplant doctors would approve.  That sounds like  a very good program.  I hope that you're able to get the kidney transplant soon then :).  Good luck to you!

  • Wow, I take the same drugs as you do, & had a kidney & liver tx five yrs ago 11-29-2011.
    So far, my #'s look good, but I'm curious about your condition. Praying for you...
    • Congrats on being 5 years post transplant!  And thank you.

  • Patty,

    I had a single lung 10 years ago, I take 3mg morning and night, but I believe at 4 years I may of been on about the same as you are, I think the difference is I was totally healthy besides my lungs, my disease will not effect my transplanted lung, my non-transplanted lung is in bad shape, but I have little/no trouble with it, as it does nothing for me.  I take those 3 drugs also, I just had my 10 year checkup this past weekend, there was another man there and I was talking to his wife, she told me had kidney trouble too, I did not ask to many questions, I stay positive in times like your having and ask lots of questions, I would be up my transplant coordinators ass looking for answers, your tac levels are what they look at and try to keep it at a certain level depending how far out you are after transplant, I now my doctor has changed from prograf to a generic, we veterans are guinea pigs though.  Good Luck, I will say a prayer for you

    • Congrats on being 10 years post transplant!  Yea, I'll be asking more questions when I actually get to see my doctor in December.  I'm glad you're doing well :).  Good luck to you too.  And thank you.

  • Hi Patty,

    Since you have access to test results, your Prograf level might appear as FK, Creatinine as CR, BUN oddly enough as BUN.  You might see a GFR reading also.  Having  a classification of CKD does not mean you are in kidney failure.  It is best to discuss this with your Tx coordinator. 

    • Thank you.  I've already checked my GFR and it is consistent with stage 3 ckd.  I already talked to my transplant coordinator who stated that I do have ckd stage 3.

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