I'm interested from hearing from people living with a transplant that is 10+ years old. I'm in my 11th year with this transplant, and I have been doing well with stable baseline creatinine of 0.9/1.0. However, last month my creatinine increased to 1.1. And then this month, it increased to 1.2. My transplant coordinator noticed this increase. She ruled out dehydration because my other levels suggested I was well-hydrated. They are sending me for an Allosure test and an antibody test in a couple days. I'm a little worried.
Is this the beginning of chronic rejection? Or could it be something else? Does anyone (who has had their transplant for several years) have experience with this? Can creatinine increase, fluctuate, and reserve? Did you see a slow increase? And then did your creatinine right itself again? And if they did they find something with allosure/antibody tests, what treatment followed? Would love to hear about your experiences. Thank you.
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MOONFACEatrueromance
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I wouldn't 'Worry', too much, about a small rise in Creatinine. I'm, fairly sure, that you are 'Fine'- especially since- you have 'reported' no Other Symptoms. If you were 'Rejecting', the Kidney, you would NOT be 'Feeling At All Well'. You would be Constantly thirsty, probably with Urgency/Wetting (quite probably with a 'noticeable' Smell.) You would, no doubt, be feeling some Pain or, at least, Dis- Comfort.
In any case, minor 'Changes', of the magnitude you are Reporting could be 'Anything'. Have you had a Cold, Tummy Upset, Sore Throat, or even, un Unexplained 'Temperature'. Did you change the Timings, of your Medication or Meals or even you 'Toilet' routine.... yes, even that. (Brian, and Charlie, took you 'Jogging'- every day- said it was 'Good' for you..... Aunt Maude Insisted you have a 'Cookie', every single Morning..... Quite apart from 'Changes', to your routine, due to Covid!)
Do, by all means, 'Talk' to your Transplant Team MOONFACE but, I'm 'pretty sure' there isn't a 'Problem'.... but DO Check. Can/ will you let 'Us' know please. Since it Is Still January..
Treat the patient not the numbers. After 33 years with my brothers kidney I have seen my Cr level vacillate between 0.8 up to 1.5and return to 1.2. I am now 71 years old I expect because of age my kidney function will decline. Regardless I will continue to take care of myself and deal with what is coming. All of us are different. Best wishes.
Being 71 also and receiving my kidney at 70 I feel very fortunate. It was not from a living donor but at 70 you take what you can get. Thanks for your share. It was inspiring.
Moon face: beginning 19 years post transplant on April 6 and turning age 80 on Jan 26. Began experiencing symptoms as you describe in this past summer. Creatinine normally 0.7-0.9 for last 18 years. Suddenly rose to 1.0 and then 1.1 and 1.2. Has gone down to .9 again ( checked for last time on Dec 27.). Nephrologist waiting to see creatinine in late February. I suspect that a transplanted kidney with only one antigen match that has functioned beautifully for 17 years may be approaching its longevity. However, you are in a different situation and hope you will find a solution that will give you many years to come.
I guess my main concern is that it is my creatinine has lived consistently at 0.9/1.0 for 11 years. So, when I see it bump up to 1.1. and 1.2, I worry that it will not ever go back down to its baseline . But, in your experience, you seem to be saying that your did return back down to your baseline of 0.9. I hope this is the case for me, too. Do you and your docs guess any reason for the sudden rise? Did you docs ever send you for an Allosure test to see the probability of rejection? I've been in the transplant game a long time, and this is the first I'm hearing of this test.
No, I’ve never heard of this Allosure test and I try to stay up to date. Will ask my nephrologist via email about it. I think, since I’m 80 next week that my neph feels I have enough power left in my transplant to get me through the next several years pop
Hi there, I received my kidney from my 1/2 sister 18 years ago and initially my creatinine was lower (1.6 or so) and over the years it has risen and dropped numerous times. I currently reside in the 2.2 range and that’s been consistent for the pat 6-7 years. My docs agree with me that it’s just where my kidney lives. I don’t get alarmed by small increases as long as I’m feeling good. Btw this is my second transplant, my mom donated my first in 1981 and it lasted 21 years on prednisone and imuran only. I hope you have continued success and try not to worry too much.
Thanks! This is actually my 3rd kidney transplant. So, I am intent on keeping this things forever. I am so worried that my creatinine will not go back to baseline and will just keep rising. But you are saying you've seen increases and decreases in your labs? Were you ever given an Allosure test to assess rejection probability? I've never heard of it, but because of this recent bump in creatinine, my docs are sending me for an Allosure test tomorrow. Fingers crossed that this creatine will just come back down on its own.
May I ask if you had to do dialysis for long between each transplant? Did they remove the previous 2 transplant kidneys and put the 3rd one in the same location?
Hey there! I was on prednisone and Imuran from 1978 to 2000! Didn't have all these side effects or anything that I do now! My 2nd Kidney 2001. It's not the TX anymore but all the side effects! I am 57.
Never had the Allosure test or biopsy but during a really bad cold I got dehydrated and my creatinine jumped to 4.0 which had me freaked out but within a few days it dropped to 2.4 and stated there for several months. I then had cancer of my right axilla caused by tacrolimus. My cancer doc who also has a degree in nephrology told me in order to successfully fight the cancer they needed to drop my dose of tacrolimus to .5 mg once a day. To my amazement I not only survived the cancer scare but my kidney function got better. Today I sit at 2.0 and still on only .5 mg of tacrolimus per day. I always ask lots of questions with any of my docs and research any advice I get from them. I hope your test goes well and your creatinine goes back down.
Glad to hear you’re doing great. I also dealt with cancer—breast cancer with on recurrence. They did not drop my meds (I’m on cellcept, sirolimus, and prednisone). Got through the cancer ok, and the kidney was stable the whole time. That’s why I’m freaking out about this new creatinine of 1.2. That’s the highest it’s ever been, and it seems like it’s been creeping up to that for the last few months.
I had my kidney in 1982. Lately, I've had some issues and my creatinine is fluctuating. It went up and then spiked. I had an ultrasound that is normal. Lately I feel stressed everytime I go for a test because of it. Last year was when it started to fluctuating. I had Pericarditis in February and two months after that it started. Then, I had a broken ankle due to prednisone and a large clot unrelated to the break. I have been in a lot of pain until the clot and break were diagnosed at the hospital. My creatinine has gone down as problems have been dealt with. The nephrologist told me creatinine goes up with age. She also told me to lose weight because it affects the kidney and the GFR goes down and creatinine goes up. It used to run 1.0 and now is around 1.5.
I am 71 years old, have my brother's kidney 45 years this April ( he keeps telling me it's good stuff and 3 years younger than the rest of me) and am only on 5mg Prednisone for my transplant. I was on Imuran for about 10 years but kept getting some minor infections, not to the kidney, so they kept lowering it until I was completely off it and the kidney continued to work fine. I have been following for may years just with my primary physician who has a background in Nephrology. For years my creatinine hovered around 1.0, then for about 10 years it hovered around 1.2 with spikes to 1.3 something. My last two blood works it was at 1.4. My doctor was not worried about this, but like you I got very nervous about it and asked him to refer me to a Nephrologist connected to a large transplant hospital near me for another opinion. She also told me not to worry, that transplanted kidneys can age causing the creatinine to increase some but based on no symptoms, good blood results and a good ultrasound of the kidney this last year, my kidney was doing fine. I decided to continue to follow with the Nephrologist as well as my primary in case I ever do have a problem and need a second transplant, as they will already have my records and my name in the transplant center. I did have Covid with no fever or breathing issues just bad stomach issues in between my last 2 blood tests and my results were exactly the same! So don't worry too much but continue to watch it closely! Good luck.
Hi I just found this post and wanted to say that I been with my kidney transplant for 20 years and at first I was feeling like u so nervous and worried because I was stable at stage 2 for so long that when my creatine when to 1.2 4 years ago felt like my world was over now is 1.4 or 1.5 I know is higher now but the dr said is because of age the kidney would never stay 1.0 or lower for ever it changes because of the years . So u will be okay as long as u take care of urself and ur kidney it will last a very long time ...God Bless
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