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After liver tx, dealing with kidney disease.

I'm at my 6 month anniversary for my liver transplant and my surgeon recommended me to go to a kidney specialist, with stage 3 kidney disease, and now they are juggling my meds again.They've increased my Prednisone back to 10 mg daily, I was at 5 every other day, they reduced my Prograf from 7 mg to 6 mg, and increased my Cellcept back to 500 mg twice a day. My body is going bananas! I get winded just walking to my mailbox, I'm tired and fatigues like I was right after my surgery. I'm on pain meds for arthritis and osteoporosis and it's not nearly as effective as it used to be and I am determined not to increase the strength or dosage.My question is, has anyone else gone through this drug juggling after their liver tx, and also having kidney issues? The Prograf is bad for the kidneys so did anyone quit or change to a different drug than the tac.?Thanks for any shared wisdom!Jacquie

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  • I took Prograf & Myfortic for 4-years.  Then I was switched off Prograf to Sirolimus, and kept on the Myfortic.  I had been asking to get off Prograf for a year just becuase it does cause kidney problems, but I don't know if that is why they made the switch or not. My dose of Prograf was 5mg, twice daily but the trough was only average 6 to 7.  

  • Hi Jacque

    The change in Prograf most likely is due to a high blood level, which would account for some of the fatigue you are experiencing along with any kidney issues. I have been taking Prograf (Tacrolimus) for almost two decades and keeping blood levels in the recommended range is key to limiting side effects. I know when my level goes over 8, I feel like I've been kicked by a mule! Increasing your Prednisone will lessen the reaction response and could help with the arthritis pain.  Your Tx team can advise you on methods of extending the life of your kidneys.  Stay strong!

    Liver Tx and Kidney Issues

    Chronic kidney disease after liver transplantation: Recent evidence. - PubMed - NCBI
    Int J Artif Organs. 2010 Nov;33(11):803-11. Review
  • As a kidney transplant patient I couldn't tolerate prograf (my cousin's kidney protested) so they took me off the tacro and I've been going between different drugs over the years. My current incarnation is a combo of rapamune and imuran.  Can they tell how much issue is the prograf versus the arthritis meds?

    I'm at the 15 year point with my kidney tx despite a whole lot of things that tried to take it out. I know it's a pain, but changing drugs can be a lifesaver.

    Oh, and don't be too afraid of the "stages" of kidney disease. They are a very general ball park-ish type measures. I was in ESRD (end stage renal disease which comes after stage 5) for close to a decade. Worry more about your symptoms and how you can maintain your fitness and worry less about labels.

    Good luck and hang in there

  • Hi Jacquie, I was searching the posting for exactly the topic you posted about! Thank you for sharing!

    I am one year post op from my bilateral lung tx. I had my one year exams this past week and the consultation yesterday at the trans clinic. I was informed for the first time that I have stage 3 kidney disease and am going to be referred to a kidney specialist. Needless to say, I was very deflated to hear this yesterday. Moving forward I will now look for ways to help my Kidneys survive by anything I can do while trusting the trans team to steer me down the best path. Not much else to do but face it and do my best to keep on moving forward. Damn sure coulda used a V8 tho. I hear hydration is the key. Any other suggestions are welcomed. Mgil453@yahoo.com

    • Hi Mark,

      I know all about the kidney issue, how I found out about my kidney issue I went to the ER for a serious respiratory issue, they ordered blood work, when the results came back I not only had pneumonia but was told my GFR was only 45%, also I was 40 years of age

      So for 22 years I lived with bad kidney function, so to save what I had left of my kidney function I was put on a kidney diet which is unbelievable, prescribed Binder's long story short my kidney function dropped to 5% I stayed like that for 16 months and never once started dialysis, had my Transplant 2 months ago and my husband of all people was almost a perfect match 6 is perfect he was a 4.

      So you can slow down the kidney damage by that Special Diet and binders but you must follow that diet, it works I'm living proof they lasted me for 22 years

      Best of Luck

      Charlie

    • Hi Mark, I just saw my Nelhrologist this week. I’m in the process of discontinuing the Prograf (tac) and go with just Zortress (Everolimus) this is supposed to be kinder to the kidneys. They increased my prednisone so my body will be strong to make the change, but if all goes well with my labs I’ll be on just the one IS med. and my Caltrate!

      have your doctors mentioned changing you to a different IS med? What are your creatin levels? Mine went from 1.9 range to 1.58 this week! My doc said I could go to stage 2 from stage 3 by my next visit!,

      you can email me at tvparents@aol.com if you have any questions.

      jacquie

      • 2 years post Liver TX, just got off Heart DX list and Kidneys taking a beating.  Add the heart meds with all that stuff and potassium, etc. is raging.  I am 2mg BID of Tac. Your Creat levels are very reasonable.  My CKD is there but my levels are assisted greatly by using my other medication" Nutrition.

        I will pound my drum that you see in any post I make regarding what we can do on our own.  What is your nutrition/diet/wellness strategy?  Protein is the building block of your nutrition.  A lot of it from varied sources.  You should take everything in your pantry out and read every label and decide what will fit in to this new lease on life.  Remember, we all HAD to have a transplant.  Now how will we all care for it and live a long life? 

        Nutrition is so important and challenging.  Gluten or dairy or whatever people are allergic to is tough.  Eating the right veggies vs other veggies based on nutrition, that is real challenge.  I miss high potassium foods a little (not really any longer) but it is best for my kidneys.  

        All foods are not created equal, not even veggies.  Food is medicine for us now.  Micro-nutrition will impact you body levels and organ wellness.  The USDA and other websites have information on many of the fresh meats/veggies/etc that you plan your new diet around.  A post TX diet is lifelong.  If a focused diet of good foods that meet our unique needs is followed the result that our life will be longer.

        Eating habits are different but I base my strategy on clean protein intake with a mix of supplement (two very specific home made shakes daily) and high protein foods of meats, veggies, a little grain and very little dairy.  Eat to live - we do not live to eat any longer.

  • I went thru exactly as you described. It took me about 1 yr post tx with ever changing meds, but my body and doctors finally got everything right. My Prograf went down and back up and will probably go back down - to help my kidneys. I, too, have stage 3 kidney disease, which they said is the new normal for me. It's ok, no dialysis and feel fine. I am 2.5 yrs out and pretty stable on meds and feel good. I had a hard time adjusting to cellcept, but they reduced it over time. My advice... work with you doctors, eat protein, protein and more protein, and exercise. Stay positive too!
    • Marilyn, thank you so much for your reply! How many mg. protein do you take in a day? I was on doctor recommended 1,000 mg. pre transplant, after, he said I could cut that I half. They are also switching me to Everolimus to cut down the kidney damaging Prograf. I start that this coming week, they want me to do labs often to make sure my levels all stay normal. I can't wait to get off the Cellcept, when they increased that back to 1,000 mg a day it was like right after surgery, no energy, winded easily, can't even climb the stairs without a break and I was doing so much better
      I appreciate all your words of advice, and comfort, if you ever want to chat:
      Tvparents@aol.com
      Write anytime.
      Jacquie
      • Glad to help. I didn't take any protein medication. I loaded up on protein via my diet with eggs, lean meat, tons of fish and whey protein in coffee. I am still anemic, but I still work on it. I didn't like my full dose of Cellcept - it really messed up my stomach. Now that the dosage is cut in half... Life is good. The only other piece of advice is watch your sun exposure. These meds we are taking increase the chance of skin cancer significantly. Use sunscreen and limit time in the sun. I am very careful, but still just got some abnormal cells burnt off this week on my shoulder. And I live at the beach!

        Feel free to reach out to me for anything. We have a lot in common.

        Marilyn.s.bullock@gmail.com
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