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Elevated Creatinine

Hello everyone. I am 6 weeks post transplant. I received a kidney from a live donor, but my donor was 64 years old but in great health. After my transplant my creatinine just dropped to 3.5 then 5 days later to 2.5. since then it has fluctuated from 2.1 to 2.3. I've had to be hospitalized twice since transplant for high blood pressure and medicine reaction to celcept. All along doctors told me for a live donor creatinine should be normal. So they scheduled a biopsy. Had biopsy March 6th. No rejection, negative for cmv virus and bk virus. I'm still at the point of them adjusting my prograf and currently I'm not on my myphortic (replacement for celcept) bc they thought I may have the cmv virus. Have not instructed me to get back on as of yet. I know I should be appreciative of my donor kidney which I am but I'm getting so discouraged with my creatinine. Today they called and told me creatinine is 2.5. I am drinking my water as I should and my output is great. I'm hoping someone can shed some light to my situation. I'm worried I will end up loosing it. I had come to terms that this was best it would get when my creatinine stayed at 2.3 for a couple of weeks. Now it has jumped to 2.5. I sincerely appreciate you reading my lengthy post. Thanks.

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Replies

  • Hi Mitzi,

    Creatinine levels can fluctuate and are affected by numerous factors (hydration, medication, illness, rejection...)  It is NOT an instant read of kidney function, rather Tx teams use  the numbers to identify trends over time.

    If you are sure you are adequately hydrating (up to 3L/day) and you are taking medication as directed, have faith in your Tx team to make the appropriate medication adjustments and investigate any other issues that may be causing the elevated levels.  Leave the stress and worry to the Tx team (ya...even stress can raise levels.)   Try to stay as calm as possible, while the team finds the answers.  

    Your Tx IS working and not " made of glass."   Know that better days are ahead and you should try to look forward to them, perhaps focussing on future plans.  These few weeks a but a very small percentage of the rest of your life and you may even get to laugh at them in the future.

    • Again thank you for your kind advice. I am looking forward to going next Wednesday to see if they will change my HB medicine bc pressure is still very high. They have me taking clonidine for now in between bp meds and to have a better understanding of my situation. You have no idea how much your posts have eased my mind and allowed me to see how worked up I was becoming stressing over this. Thank you so much!
      • In the absence of real news.....we all create our own hell.  I look forward to hearing better news....keep us posted.

  • I'm sorry to sound harsh, but it's a bit irresponsible of your tx team to tell you to expect "normal" numbers. There's no way to guarantee that. I got my kidney from my cousin (who was 41 at the time) and my numbers have never been "normal".  On the other hand, I've had over 14 years of pretty stable creatinine.

    My "normal" baseline is about 1.6 - 1.8 and it often scares baby-doctors when I'm in the ER. They start screaming "kidney failure" until I calm them down discuss with them that these kidney numbers are "normal" for me.

    While there are no promises in transplant life, your numbers are similar to what mine were at the beginning. And here I am over a decade later, doing well. So try to relax a bit. You will have to wait and see what happens. Give your body some time to recover from the surgery (the kidney needs recovery time too, given the shock it's been through) and keep in mind that it will be at least 6 months until your drugs are at a more stable level.

    The bottom line is that in some cases (like mine and yours) things can be up and down for the first year. So right now, try not to read too much into every individual labwork. You are getting a lot right now and they do this actually because things get weird in the beginning.

    Here's hoping you will reach stability soon. Hang in there.

    • Thank u so much for ur reply. You are so right with everything you have said. I guess I am in panic mode when I need to just give my body and new kidney time to adjust. Thank you for sharing your story. It gives me hope and encouragement. When you are down and out you feel like you are in this bubble and there is no way out. Thank you transplantfriends for this sight! Have a Blessed day!
  • You can use SEARCH tool on this website by typing "creatinine". You will find lots of posts on the topics of "elevated creatinine". You will learn a lot from it. You will feel much better after you read those posts.


    Wish you the best.
    • Thanks for replying. I'm new to this sight and having trouble finding the search. Could u help me. Thanks!
      • After you click "Forum", on the top of screen of a cellphone or iPad, or desk computer, you will see "Google Custom Search". It's a tiny white box.
        • Thanks! I see it
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