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| | |-+  Hi haven't beenon in awhile. Been doing good. But I have had a 1.8 creatinine
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Author Topic: Hi haven't beenon in awhile. Been doing good. But I have had a 1.8 creatinine  (Read 2910 times)
Neo
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Dont let dialysis stop you...

« on: February 03, 2014, 08:42:21 AM »

It's been holding at 1.7 1.8 for more than a year now. I don't know what this means for the long term success of my transplant. I'm  3 years out now. Anyone had a kidney with that creatinine last for a long time?
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Angiepkd
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« Reply #1 on: February 03, 2014, 06:40:39 PM »

Hi Neo! I am not sure what your circumstances are, but my younger brother had his transplant almost 8 years ago. His creatinine right after transplant got down to 0.9/1.0. After about a year, his numbers started climbing. He had a biopsy, but didn't show signs of rejection. He did develop the BK virus, but after several months of treatment, his numbers went down and they stopped his leflunomide sp?. His current creatinine numbers range from 1.9 to 2.2. He says he feels great and he only sees his neph every six months for blood work. The general consensus from his transplant team is that this is where his "normal" should be. He is a very big guy (6'9" and 275 pounds). He had a cadaveric transplant, and the doctors think his kidney was possibly from a smaller person. Not sure that any of this makes sense, but know that he is doing amazingly well. I guess the numbers don't always signal a real problem, but I am sure your transplant team will want to investigate further. Hang in there! It's probably nothing! Hope everything checks out fine!  :cuddle;
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PKD diagnosis at 17
Cancer May 2011, surgery and no further treatment but placed on 2 year wait for transplant
October 2011 first fistula in left wrist
April 2012 second fistula in upper arm, disconnect of wrist
January 2013, stage 5 ESRD
March 2013 training with NxStage home hemo
April 2013 at home with NxStage
April 2013 fistula revision to reduce flow
May 2013 advised to have double nephrectomy, liver cyst ablation and hernia repair. Awaiting insurance approval to begin transplant testing. Surgery in June.
June 2013 bilateral nephrectomy.
August 2013 finishing testing for transplant, 4 potential donors being tissue typed.
January 2014 husband approved to donate kidney for me
March 4th 2014 received transplant from awesome hubby. Named the new bean FK (fat kidney) lol!  So far we are doing great!
Simon Dog
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« Reply #2 on: February 03, 2014, 10:41:35 PM »

Start to worry if it moves in the wrong direction, and beware of small statistically insignificant changes that are part of a trend.   I went for 17 years (original kidneys) where each office visit was always within measurement error of the previous visit (1.7 vs 1.71, etc.) but the trend over time was unmistakable.
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Poppylicious
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« Reply #3 on: February 04, 2014, 07:20:51 AM »

Hi Neo. My Blokey (transplanted in October 2011) has a stable creatinine of about 150 (1.7-ish in AmeriSpeak). His team were worried at first that it wasn't going down, but it's always been that *high* so as far as the nephs are concerned it's just his normal. Whether this has any impact on the long-term success of the kidney I don't know, but because nobody else is fussed about it - and all his labs come back fine - we're happy! 

 ;D
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- wife of kidney recepient (10/2011) -
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coravh
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« Reply #4 on: February 04, 2014, 02:19:05 PM »

Hi Neo. My cr. has never been completely stable. My gift was damaged when they removed it from my cousin (unforeseen circumstance that affected the surgery) and my initial level was about 1.3. By about 18 months it was creeping up and it was determined through biopsy that I had prograf toxicity. My meds were changed adn things dropped a bit. For many years (years 3 or so to 8) my baseline was about 1.81. Sometimes a bit higher, sometimes lower. Then I had other problems and lost about 40 pounds I couldn't afford to lose (downn to 85 lbs). Because of all sorts of stuff my baseline has now dropped to around 1.3 or 1.4 and has been at that point for the last few years. This October will be my 12th anniversary and my cr. is roughly what it was post transplant. Part of the trick for you will be to simply keep an eye on it and stay calm. When my baseline was higher I would often put up to 2.2 or 2.5 due to colds or other illness. But would drop back. That 1.8 was an average and I've always been labile. So the good news is that as long as you remain roughly stable, you probably have a lot of years of your new kidney ahead of you. Best of luck.
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ToddB0130
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« Reply #5 on: February 04, 2014, 07:33:55 PM »

My understanding is that dehydration can also impact creatanine numbers as well, so stay hydrated.  Also talk to your transplant team to determine their level of concern as well.
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