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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 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:
      Write anytime.
      • 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.
  • Yes, I had the same issues as you under the same circumstances. My doctors kept shifting my medicines like you until my body adjusted to my new liver and medicines. After everything calmed down with my body... I tried to get stronger with walks everyday and lots of protein, which worked. I still have stage 3 kidney disease without dialysis. It is my new normal and it is ok. I feel good, strong and thank my doctors for working together on my meds. This is important... Make sure your doctors share everything and talk. Stay positive!!! You have been thru a lot and it takes time to heal. It will all be better soon, but you need to do your part to get even better. God Bless.
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