Recent kidney transplant patient


About 6 years ago I was diagnosed with Polycystic Kidney Disease a genetic disease which causes cysts to grow in the kidneys slowly shutting them down. I was very fortunate that in April 2017 before I had to start dialysis a suitable kidney became available. Since my transplant I have seen my creatinine levels swinging wildly up and down to my consternation. It seems to me the post kidney transplant management is more worrying than the actual transplant.

I would like to hear from other transplant patients their post transplant experiences.

8 Replies

  • Hi Yahoo999uk,

    This community has not officially launched yet, but will this week. You should receive a response from one of our community members very soon.

  • Hello,

    I'm sorry to learn about your cr levels swinging wildly. What are your transplant Nephrologists saying about this? Have they changed your medications, doses or made any other changes? I do not have experience with this personally, so I'm unable to share any thoughts here. Perhaps you will hear from others soon. Thanks for writing in, as there are always individuals out there looking for people who are experiencing situations just like them. Stay strong and be sure to get your doctor's to explain more too.

  • How are you tolerating your immunosuppressants?

  • I started on 6mg of Adaport immunosuppressant but have since reduced to 3mg twice a day. The concentration of tacrolimus in my blood has been too high. I have noticed that when the concentration drops my creatinine drops. I am tolerating the drugs reasonably well. My consultant has told me being an older person I do not need as much immunosuppressant as a younger person especially as my transplant has a 000 mismatch.

  • Three months is not usually enough to stabilize your meds.

    It took me about six months to get stabilized.

    Hang in there!

  • Thanks for the confidence boost. This week my creatinine dropped 10%!

  • Always been stable. Not heard of this before.

  • Further reduction in the dosage of my immune suppressant has resulted in a further reduction of my creatinine by 20%. My transplant consultant is on the right track when he says each patient needs a personalised medication plan.

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