So I finally got the call and received a kidney about a week ago. Everything has been running smoothly until today when my creatinine has crept up (mid 130s to 150s, now 160s) and eGFR down from 36% to 33%
The doctor says they aren't too worried at the moment but may look at doing a biopsy tomorrow. And obviously I'm getting myself worried that something is wrong!
Can anyone offer any words of wisdom? Thank you.
Dip in eGFR after transplant?
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Re: Dip in eGFR after transplant?
Hi Lily, firstly congratulations on your transplant! Not for nothing do we refer to the time post tx as a roller coaster ride ... After the euphoria of the immediate post tx period it is not unusual for this to happen - it did to me. I had a biopsy but no rejection and was possibly slight dehydration (my new kidney was working so well and I was drinking > 6l/ day!) but nothing obvious ... I was actually discharged on the Monday and re admitted on the Thursday after clinic. As long as they explain to you what they are doing and why, I would not immediately jump to the worst possible conclusion!
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AmandaClare
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Re: Dip in eGFR after transplant?
Congratulations on your transplant, Lily. Hope things are back on course again today.
Alports Syndrome
Dialysis 1986, aged 14
Transplant 1988, still going strong!
Baby boy 2010
Dialysis 1986, aged 14
Transplant 1988, still going strong!
Baby boy 2010
Re: Dip in eGFR after transplant?
I would agree with Mandy. My brother does not contribute on here but he had the same sort of issue. It took about six weeks before his creatinine and Tacrolimus dose had any sort of agreement. In that time his creatinine went back up to 170-odd (and he had a biopsy) after being 142 soon after the op, but now it's back down below 150 again. Mind you, the doctors didn't seem to know WHY his creatinine did that - it seems to be quite common, so stick with it.
Don't worry about the eGFR - this is inversely related to creatinine but I think it's a poor indicator. I just found out (from PatientView) that, as a donor, my eGFR was twice measured at around 60 in the months before the op - which should have ruled me out. My actual GFR was measured radioactively a year previously as 86!
Don't worry about the eGFR - this is inversely related to creatinine but I think it's a poor indicator. I just found out (from PatientView) that, as a donor, my eGFR was twice measured at around 60 in the months before the op - which should have ruled me out. My actual GFR was measured radioactively a year previously as 86!
Please see my blog http://diaryofakidneydonor.blogspot.co.uk/
Re: Dip in eGFR after transplant?
Congratulations on your new kidney!
I was specifically told to ignore the actual creatinine number for a transplanted kidney, especially in relation to eGFR, as all the eGFR calcs are based on your having 2 functioning native kidneys. What's important, as you identified, is the stability of the creatinine number over time.
I was also told that it's normal for creatinine to go up after you leave hospital. Have you left hospital yet?In hospital you're closely monitored, people tend to be better hydrated and you're not active & sweating etc etc etc. When I left hospital after my nephrectomy in September, my creatinine jumped 20 points the week after.
The biopsy will tell you if there are any issues. I've had (I think) 6 or 7 biopsies, 3 in my native kidneys and 3 or 4 in my new kidney. The biopsy in the new one is way easier - much less pain and no lying on your front during the procedure!
I hope everything goes well. Whatever happens now, it looks like they've picked it up very early. It's natural to be concerned, but remember there's a whole department of people whose job it is to be worried on your behalf!
I was specifically told to ignore the actual creatinine number for a transplanted kidney, especially in relation to eGFR, as all the eGFR calcs are based on your having 2 functioning native kidneys. What's important, as you identified, is the stability of the creatinine number over time.
I was also told that it's normal for creatinine to go up after you leave hospital. Have you left hospital yet?In hospital you're closely monitored, people tend to be better hydrated and you're not active & sweating etc etc etc. When I left hospital after my nephrectomy in September, my creatinine jumped 20 points the week after.
The biopsy will tell you if there are any issues. I've had (I think) 6 or 7 biopsies, 3 in my native kidneys and 3 or 4 in my new kidney. The biopsy in the new one is way easier - much less pain and no lying on your front during the procedure!
I hope everything goes well. Whatever happens now, it looks like they've picked it up very early. It's natural to be concerned, but remember there's a whole department of people whose job it is to be worried on your behalf!
26/11/12 - Live donor transplant from my dad
6/1/13 - Discharged - Rejection episode over
7/1/13 - Getting on with life
24/9/13 - Left Radical Nephrectomy of Native Kidney due to cancerous tumour
14/10/13 - Back to work, getting on with life
6/1/13 - Discharged - Rejection episode over
7/1/13 - Getting on with life
24/9/13 - Left Radical Nephrectomy of Native Kidney due to cancerous tumour
14/10/13 - Back to work, getting on with life
Re: Dip in eGFR after transplant?
Hi i had my transplant 2 weeks ago and have had 2 spikes in creatine my base is about 150 but twice it has gone to 170/180 but the next day back to 150 and they have put it down to being slightly dehydrated also they havnt quite got my tac levels right also my phosphate went to zero yesterday but .4 today so avoided going on the drip
Re: Dip in eGFR after transplant?
Congratulations Lily123 and cowman on your transplants! 
Re: Dip in eGFR after transplant?
Thanks for your replies! Encouraging to hear that this type of fluctuation is somewhat normal.
I had a biopsy done - unfortunately the sample was very small but there may be signs of inflammation. They might need to do another one but I can safely say a biopsy on the transplanted kidney is one of the easiest procedures I've ever had so don't mind them doing it again.
Creat. is stable at 180 but previously has been down around 140. But at least it's not getting worse!
On a side note, any advice for day-to-day life now, post-transplant? Things to do/avoid?
I had a biopsy done - unfortunately the sample was very small but there may be signs of inflammation. They might need to do another one but I can safely say a biopsy on the transplanted kidney is one of the easiest procedures I've ever had so don't mind them doing it again.
Creat. is stable at 180 but previously has been down around 140. But at least it's not getting worse!
On a side note, any advice for day-to-day life now, post-transplant? Things to do/avoid?