Baseline creatinine

[kimosabi1961]

2 yrs. post transplant, and my base is 2.0-2.5. Anyone else close to this? I wished it was better.

[Eyak1971]

By asking this question I feel your anxiety. A transplant was supposed to end our worries but like you it brings on different ones. I had less worries when I was on dialysis. Now after a transplant and new medications I worry more about every decision I make concerning good choices and daily activities that might expose me to viruses and diseases. I recently had to have a MRI for a hearing loss and now I lose sleep because the nurse said contrast would be ok because my kidney function is ok for such a test but when I was on dialysis it would be a definite no. So the worries continue. You want to make all the right decisions but you feel a loss of control. You know the doctors are giving you good advice but you sometimes even doubt them. All I can do is try to find acceptance in what is happening and get up each morning and start a new day. I wish i had a better answer but at 1 year post transplant I hope that I will reach my second and third and so on no matter my creatine level. And if I get to the point I have to go on dialysis again I know what to expect. You have come through so much please know it was for a reason and keep hopeful that your creatine level does not define you. How you feel is more important.

[OperationKidney]

Several questions for you:

How old are you if I may ask? How old is/was your donor and were they living or deceased? What was your baseline following transplant before it started to go downhill? If you have other conditions are you managing them well? Are you staying hydrated? Are you staying on top of your anti rejection meds & taking them as prescribed?

If everything is good with all of that, I'd keep advocating for yourself with your doctors. I say this because I'm almost 2 years out from transplant and recently had a steady uphill trend in my creatinine numbers as well as other symptoms like intense episodes of GERD, ongoing UTIs with no explanation, fatigue, high white blood cell counts, etc. I went through a few primary care doctors before finding out I had a stent left in by accident from transplant surgery. When I had it removed they found a bunch of stones surrounding it that were blocking off the ureters from the donor kidney (most people have one ureter for each kidney, but my donor had two, hence the two stents). Since that removal things have made a complete 180 and my numbers are looking better.

This isn't to say that a leftover stent is also the issue for you, but I do hope you're able to find answers as to why your transplanted kidney has taken a downhill turn. Above all else though give yourself grace. Dealing with chronic health issues is not easy. You're in my thoughts ❤

[Hidden in reply to OperationKidney]

I worry and have anxiety as well and I have had my kidney since 1982. It is pretty normal to worry.

[OperationKidney in reply to Hidden]

Yup anxiety is a real pain! I constantly worry about my kidney too even when things are fine.

[kimosabi1961 in reply to OperationKidney]

I'm 59 and my kidney was from a deceased donor

[OperationKidney in reply to kimosabi1961]

Hmm, could be that then.

[March-31-09 in reply to OperationKidney]

So much good information & advice!Thanks for sharing your journey.

#MyKidneysMyLife

[Charly1429]

I know how you feel! I’m 9 months post kidney transplant and my creatinine was pretty much 1.2 then it went to 1.4 and then within a month it went back to 1.29, so in my virtual visit with my Nephrologist I voiced my concern, and she made me feel so much better when she said she has patients whose baseline have stayed in the 2.0s for years and years and everyone’s baseline is different. So hearing that it just gave me a sense of relief that everyone’s baseline is different. I hope this helps!

[Porter20 in reply to Charly1429]

I was told the exact same thing. Everyone’s is different and your range is your range not like anyone else.

[Hidden]

Hey kimosabi1961, it seems like your baseline creatine is quite high, yet I was reading from this one website that your baseline does increase as you become older and also can be related to your gender and race as well. I would ( if you haven’t already ) talk to your nephrologist and see maybe what you can do to lower it ( if anything ). I know that as my creatine was creeping up, my nephrologist was very concerned and started me on dialysis, yet at the time I was only 36. I would also do some research, just search baseline creatine on google and you will be amazed how much you will find. I hope you find some answers and help, and hopefully find a way to lower it. Blessings.

[WYOAnne NKF Ambassador]

Yes, please remember that we are all different - before and after transplant! My nephrologist had told me that as long as your creatinine value is stable, doesn't jump around, this is your new normal. You are only 2 years out, with time it could stabilize at a lower value.I am 21+ years out and after the first few years, my creatine is 0.9-1.1

Best of luck to you!

[March-31-09]

I had a transplant in 2009. My creatinine has jumped around too. My feeling has always been - if my nephrologist isn’t worried, I’m not going to worry either. Drink tons of water. If I ever have questions, I always ask folks at my transplant center. God Bless you on your Journey. PS I try to remember how lucky I am. Over 100,000 people are on the waiting list.

If you are in the US, NKF Peers might be something to look into.

[kimosabi1961]

Thanks to everyone!

[ToddGiles]

Hi there. My son received a kidney from me in 2014 and his creatinine has been close to 2.0 since shortly after the surgery. He still regularly tests 1.9 to 2.1 but the doctors have just told us this appears to be his baseline. He is doing well and has not had any complications due to the elevated levels. Hope this makes you feel more comfortable. Take care.

[MomofRecipient]

My son's creatinine baseline is 1.9 - 2.3 two plus years post. Living donor, but she was much smaller than my son so size mismatched. As long as it stays steady, his doctor isn't concerned. Keeps reminding us that every case is unique. Best of health to you.

[homerontherange]

Hi there, I’m a 18 year post transplant patient and my creatinine is in the 2.2-2.5 range consistently. I started out around 2.0 and received a related donor kidney. My doctor tells me it’s just where my kidney lives. This is my second transplant, my first lasted around 21 years and my creatinine through most of its life was around 1.5. I would recommend talking to your doctor about your concern but I imagine it’s just where your kidney lives. Good luck and God bless.