Looking for some insight. I’m a bit worried about my creatinine levels. I’m only 2 weeks out from surgery but super surprised my creatinine levels are still around 5.4. It was actually around 6.22 right after surgery. Came down. Then slightly up. Labs 2 days ago had 5.4. So it has come down but I guess I assumed my creatinine would be normal by now. Hospital has done various sonograms and a biopsy and said everything looks perfect. Kidney just a little sleepy. Any suggestions on how I wake it up?! Lol. Also what were ppl’s immediate post transplant creatinine levels? I’m trying not to worry and just relax/trust the process. But the situation still causes me a lot of anxiety.
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Castildd
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I received my kidney transplant two years ago from a living donor. My kidney was a bit sleepy also after surgery. At the hospital I was told to drink plenty of water. The numbers started to decrease slowly. Everything is absolutely fine now. Good luck!
Mine took a while . I didn’t worry too much as my surgeons and team told me it would be sleepy for some time and I have complete faith in them which really does help. My EFGR was 5 when I had the transplant so I was grateful for any increase in that ! Just look after your self and stay as calm as you can. It will change . Good luck .
Hi! I definitely need to be better about trusting the process and team. I’m just naturally such an anxious person.... some would say control freak (hah!) so hard to let go. But I need to relax. Thanks for sharing your encouraging story!
It’s a long journey . Pace yourself . And as someone in the thread said , let the doctors worry. I’d say I’m just coming out of the recovery phase which has lasted 14 months.
Side effects have settled although will no doubt keep surprising me. Your body will look after you if you trust it and reads it with exercise, nourishment and fluids . The negotiating going on between the body and the meds takes a long time.
There is a new normal and you will find it. I know realise what happened to me is physically and emotionally enormous. Accepting that has taken me a long time.
Mindlefullness is very helpful . Try the bodyscan meditation by Prof Mark Williams at
The Oxford Mindfullness Centre it’s on the internet and is free. It will do wonders for your busy anxious mind.
I received my kidney from a deceased donor 21+ years ago. My kidney started working right away, but I know others that also had a "sleepy" kidney. My advice is to do all you should. Continue to have your labs done as prescribed, take your meds, walk for exercise and drink plenty of water.
My creatinine was all over the place at first and then settled down. I actually had 2-3 biopsies done that first year. No rejection.
Keep us posted and hopefully soon your new kidney will decide to wake up.
Hey! Just want to say that your story is super encouraging. I’ve read your responses on several posts and it always makes me feel so much better! I had a biopsy done before I left the hospital and I hope I don’t need one again because lord. Super cool but also nerve wrecking test. I definitely need to push myself to drink more water and walk around more. It’s been hard adjusting to the meds. A lot of upset stomach episodes and that just totally drains me. Hard to even eat sometimes. While I was in the hospital they reduced my tac & cell cept levels so idk if they’ll reduce further in order to decrease the side effects. My sleep is also off. So all those things just doesn’t help when it comes to me walking around etc. I know I need to be patient as it’s only been 2 weeks post surgery but I just want to feel 100%.
Having clinic today so let’s see what happens!
Hi Castildd...
I forgot to mention, in the other thread, this sage advice about worrying or anxiety? Last week, one of the transplant clinic doctors, asked me "what are you worried about?" I said "my creatinine." She responded with "Christopher, let the doctors do the worrying for you." That is so true! Once, I unpacked what she had said, I realized that I had forgotten that the doctors are the ones with the expertise and I that I need to trust them.
While your numbers may not be where you would like them to be, trust your doctors and their "sleepy kidney" diagnosis. Additionally, you've had a biopsy that indicated your kidney was fine. And, worrying doesn't add a single day to your life. Cool!
I know, giving the worrying over to your doctors may not be an easy task. I certainly have some anxiety over my current labs. My TAC went from 11 to 16. However, my creatinine has been stable, at around 1.25 for about three weeks. As long as my creatine is stable or going down, I'm happy. When the numbers go the other way, that's when perseverance is necessary.
Since my transplant I've had both very high/low TAC levels. I know my doctor suggested that the high TAC level would definitely make the new kidney sleepy. They would prefer a "narrow therapeutic level" of between 8 and 10. Also, I THINK that the high level caused me to loose bunches of hair. Albeit, it could be from any of my other new drugs.
After my Monday labs, the transplant nephrologist told me to skip my TAC dose today and start a lower dose on Thursday. I think I'm sort of a difficult case since I've had GI issues, on-and-off, since the transplant.
Considering the circumstance with COVID, I wish you a peaceful Thanksgiving
Give it time, I had a transplant about a month ago and it took a week for the creatinine levels to start coming down, if your biopsy shows nothing wrong then don’t worry sometimes it takes time for the kidney to get working, are you doing any dialysis while waiting for the kidney to work.
Hi! No, no dialysis. At clinic as we speak so I hope my blood work shows a decrease in creatinine levels. Wish me luck and thanks for sharing your story! Sending positive vibes your way!
My creatnine bounced around for a few months before stabilizing. My center keeps my Tac level around 5. They do that by adjusting your tac & cellcept. good luck & don't worry
Thank you! I hope they adjust the tac and cell cept down. I’ve been having a lot of side effects from the meds (upset stomach, bad sleep, anxiety) and I feel like those side effects are holding me back from doing more of the stuff I should be doing such as walking around. Good to know your tac levels are so low but still not risking any rejection episodes. Thanks for sharing your experience and sending positive vibes your way!
My kidney was asleep for 3 weeks. Did 3 rounds of dialysis and it finally kicked in! My transplant is now 24+ years old. Hang in there, the future is bright.
Be patient. I know that is hard. I received a sleepy kidney because it was not a living donor and it took a while to wake up but when it did I was constantly urinating. Since then it has been improving and now has leveled out. Keep positive and keep in touch with positive people. Stress Will not help.
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