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Hi Everybody,

For those of you that have had your transplants for awhile, I am wondering what you creatinine levels are? I was just transplanted 4 weeks ago and the lowest that mine has gotten is 1.76 and every time that they increase my prograf the creatinine goes up. The transplant clinic is saying that my creatinine needs to be below 1.5. I have asked what happens if it doesn't get there and they said that maybe it would indicate that the new kidney has an issue. I thought that 1.76 was great because my creatinine was 11.7 pre transplant. If you have had your transplant for many years do you remember what it started at and how is it now? Thanks for your input.

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  • I had my kidney transplant on Aug 6 of last year (2014).  My creatinine was 0.66 in my last blood test earlier this week.  I take a holistic approach to taking care of my kidney with the hope that it will last a long, long time.  I really don't want to go back to dialysis!

    • Hi Bharat,

      That is great that your creatinine is at 0.66.....I am 3 months post kidney transplant and my creatinine level leaving the hospital was at 0.86 and now my creatinine level since my last blood test last week was at 0.96. I was just wondering what kind of food or diet you are doing to keep your creatinine really low. 

      Thank you and be well

      • Hello Juan.  I have been doing several things.  When I was in the hospital, I walked 1 mile daily.  After I was released, even though I couldn't walk straight due to the surgery, I would slowly walk 2 miles daily.  I then increased slowly over time the walking distance, and then I started running as well.  I am very consistent in my exercise - e.g. I haven't skipped a day since mid-Dec 2014 of exercise.  I think consistent exercise is one thing that is helping me.

        I also am very careful in my diet.  I stay away from preservatives, chemicals, processed things, etc.  I am a vegetarian.  I eat gluten free and also dairy free.  I also don't eat sugars - no fruits, no sodas, no sweets, nothing with added sugars, etc.  No junk food.  I only drink water - 12 cups per day where one cup is defined as 8 ounces.  I drink well water which is slightly alkaline (I have tested it with a pH strip).  Most city water, bottled water, etc. is actually acidic.  So I am aware of alkaline forming foods vs. acidic forming foods.  I strive to eat more alkaline forming foods.  I stay away from bad fats and eat good fats (e.g. nuts is a good fat).  In the morning, I have one scoop of Garden of Life Raw Meal, and one scoop in the evening as well.  Take a look at http://www.gardenoflife.com/Products-for-Life/Foundational-Nutritio...  It is raw, gluten free, vegan, dairy free, chemical/preservative free, no added sugars, etc.  Tons of nutrition in there (many sprouts, fibers, grasses, antioxidants from berries, probiotics, etc).  I also eat nuts such as almonds, peanuts, cashews, and pistachios  And veggies with spices and hot peppers.

        I also make sure I have consistency in my sleep.  I have a bedtime of 9 pm and I set my alarm for 6 am.  The key is a consistent planned sleep schedule.

        My lifestyle throughout the day is very active.  I work full-time and am active throughout the day.

        I am also careful to make sure I take my medications everyday on schedule.

        If I want to eat out once in a while, I limit it to no more than once per week.  And even then, very careful to pick healthy things (e.g. no fried things).

        With all the above, I don't get sick easily.  I also am careful to stay away from sick people.  And I wash my hands and keep hand sanitizer with me.  I always cleanse my hands after shaking someone's hands.  I use my sleeves or paper towel to open up doors.  Use my elbow to push buttons in an elevator, etc.  Very careful about germs.

        Hope this helps!  Basically, doing everything I can to stay healthy and take care of my body as well as kidney.  People might think that it is restrictive, but I think I am "free" as I feel much better than ever before with this lifestyle both physically and mentally.

  • Reposting from transplantbuddies, which I believe is obsolete now...

    Life is not easy for us recipients - is it ?

    It is little over two months after the transplant. I was discharged with a level of 1.33 and it has since then fluctuated between 1.33 to 1.72. Last reading was 1.69 ( 8th March). All other blood work reports are good and I am allowed to eat and drink pretty much everything.

    Just to rule out rejection, I have had a biopsy already - they didnt find any signs of rejection. My tacrolimus levels were low around 4 to start with. To bump it up I was asked to do the following -
    1. Substitute a BP medication with Dilzem SR 90 mg thrice a day
    2. Asked to increase the tacrolimus (Nacsent) dose to 3.5 mg - 3.5 mg from 3.0mg - 3.0 mg daily. ( I am about 68 Kg in weight)

    After the first changes trough tacrolimus level becaame 5.85 and after the second change also it came up to 12.5. This is when my Creatinine level slowly increase from around 1.4 to 1.69.
    The doctors recommended to decrease the dose to 3.5mg - 3.0 mg and after three days - no change in creatinine levels. Have to see the doctor tomorrow and we will need to do another tacrolimus level shortly perhaps. In betweeen, my wbc count went up to 18.3 so they asked for a urine and blood culture. The results were negative but I was asked to take antibiotics Forcef 450 mg twice day for about 8-9 days. Now it is back to 11.3 ( around the normal range).

    After reading tons of materials online it seems Creatinine level can go up because of
    1. rejection - which in my case at least they havent found any evidence after the biopsy too.
    2. High tacrolimus level - this could have some contributing factor in my case as my last reading was above 12. They have reduced the Nacsent tablets to 6.5 mg and I havent seen any improvement. Should the doctors decrease the dosage further? Maybe they should.
    3. Dehydration - I drink about 2.5 to 3 l a day and it is difficult to drink more but i will try.

    Anything else that could be going wrong? Should I try anything else?

    I know this is a very common concern and question also here in this forum after the transplant but still wanted to ask.

    I began with the sarcastic comment, but let me add also that I am enjoining no dialysis being able to eat peanuts, chocolates ( in moderation) and potatoes again. So no complain.


    Thanks,
    Rajiv


    Kidney Disease: IgA Nephropathy since 2002
    Dialysis - 10th Nov 2012 till 2nd Jan 2014
    Both Haemo and PD.
    Kidney Transplant-3rd Jan 2014
    Apollo Hospital, Bangalore
    Nephrologist-Dr V. R. Raju/Dr. Satish
    Donor-My wife
    My email-rajiv_k_mishra2003@yahoo.co

    • Update -

      So to check #3 and effect of dehydration, I devoted an entire 24 hour period to drinking water. Was able to manage around 7 liters of water  I then did repeat the Creatinine test again today morning and the Cr had dropped from 1.69 to 1.49.  This was with all other things equal.  Normally I drink around 3 lit of water/day

      Thanks,

      Rajiv

  • On Thursday last week my nephrologist,which is 100 miles away) said that they needed to see me that day or the next. My creatine level had increased from 1.3 to 1.6. They were concerned at this level because I had maintained a creatine level of 0.5 to 1.1. The labs they were using were 4 days old and by the time they had taken new labs that day it was back down to 1.45. The best advise I can give is to keep well hydrated. I had fallen behind on my water intake and doc said must maintain intake of water.
  • I am 5 weeks post kidney transplant and I had a "sleep kidney". As of yesterday my creatnine was .9. My kidney was 5.8 post transplant and stayed that way for about two weeks.

  • hi dear

    hw r  u ?

    its normal to have creatinine level up to 1.8 after kidney transplant...may due to medicines....but u have to take precautions in food habit.

    bye bye take care

  • Hi Jennifer I donated my left kidney to my mom in 2012. Id luv to get your book, is their website?
  • Good morning! I donated a kidney to my mom in 2008. My mom's creatinine level is 0.8 or so. To quote her "I eat to keep the kidney alive".
    As a nurse, the way one eats is vital to proper organ functioning. There are so many foods out there that are kidney friendly, and helps the kidney function at its best! My mom and I have co-authored our 2nd book. This new one is titled "smoothies for kidney health". It's due out in the next week or so. It's loaded with vital information for optimal kidney health. Proper eating combined with exercise will bring your creatinine level down!
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