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  • Dear all friend .

    i would like to konw who is longest time after liver transplant in the word, I would like to share his experice in past 

    thanks for you attention ,

    all the best 

    luoming

  • Hi 5 years ago I had an fulminant hepatitis, the probably cause was auto inmune . I has a trasplant almost at the end. Now 5 years after I am reajecting te liver . So I started an agresive treatment  increasing the prednisona and Cell cept with the posibility to increase the prograf XL next month. I want to know ig do you have had  similar experiences  that you can share 

    thanks

    ximena 

  • Hi Lisa! I'm new to the group also. In answer to your question, my MELD score was 40 at the time of transplant. For perspective, I was admitted to the hospital & diagnosed between Nov 15th & 22nd. (I was completely healthy prior to this time.) At the time of diagnosis, my MELD score was 32. By the end of the first week in December it was 40! Holy Guacamole. Hang in there, and all positive thoughts to you!

  • Hi - I'm new to the group. Liver transplant Dec 18, 2017 from my son-in-law. I am on mycophenolat 1,000mg twice daily, tacrolimus 2mg twice daily and prednisone 5mg once per day (and various other meds to manage side-effects). Docs want to add everolimus (zortress) .75mg twice daily... in hopes to reduce tacrolimus due to adverse side-effects. I am really anxious about this drug with all the listed side-effects. 

    I understand everyone is different but it would be helpful to hear from a few folks who have taken this med and their experiences. 

    Thanks

  • How long has anyone had jaundice prior to transplant?  Really interested in those with decompensated cirrhosis due to alcohol abuse.  I am

    in my 28th month and feel time is very short.

     

  • -Today i woke up earlier then i do. I thought about people whom are going through the tough times. I thought alot about the younger generation on our reservation. As this sickness took lives from their loved ones. I feel it when someone goes through this. My heart hurts for those whom are mourning. If i can just reach out to people and help. I hope to one day try and make a difference. I hope to one day see less of the younger adults pass away from liver failure. I sat there at my best friends house yesterday with a lump in my throat, thinking of families going through this. I prayed for the ones who are sick and i prayed from the ones with good health. My mind racing at all times of the night, thinnking of how i can help or what to say to the families going through these hard times with their loved ones. As i remember having my mother by my side the whole way through the process. Today my heart is heavy, with alot of emotion and alot of heart felt tears going into what im writing. This sickness is taking alot of loved ones. I feel like everytime i hear of a person my age getting sick, i feel for them. I PRAY FOR STRENGTH............

    • Wondering how long post Tx you are?

      It is definitely a challenge. Most people I encounter know I had a liver Tx and the journey I took.  It is a challenge as making a difference seems overwhelming.  Just think how many people smoke and it tells them on the box it causes cancer.  Educating your sphere of influence is where I started.  My friends tell me I speak like a motivational speaker around them but gratitude is powerful so all I can do it pass it on.  Emotions are a newer thing for me but definitely still have moments and that is Ok.  

      Like the famous speech from Jim Valvano: "If you laugh, you think, and you cry, that's a full day."  Cancer took him but the V Foundation has raised hundreds of millions.  While I am not sure I can do that I know I can live the best life possible for myself and for the person who lost their life and gave me mine.  The challenge is, what does that look like?  For me it looks like service to others.  How I can raise awareness is a question I ask myself often.  Well I started with letting everyone know I am a Tx Survivor and how the gift of donation can really make a huge difference.  When I have had the opportunity to speak with pre Tx patients I tell them my story and allow them to identify what resonates.  

      Keep praying and keep your head up.  And feel free to educate those around you.

  • Hello, I am nearly 9 months post liver transplant. I am having some symptoms that have been getting worse and I can't figure out what I can do. First is anemia. I'm on 4mg tacrolimus and 540 mycophenolate a day, just got off the prednisone about 5 weeks ago. I take iron but it never gets better, can't exercise because I get so out of breath. At this point I am also swollen with edema and my hair is falling out, both of which they say could be related to anemia but could be the tac or myco. Had a heart/stress test workup, all normal, there is absolutely nothing wrong with me that they can find. CMP is stellar as are my CBC #'s and kidneys are functioning perfectly. I haven't had a reduction in any of my meds for 4 months (except the pred). How do you all cope with anemia? Do you find it is the meds doing it? Is it a common thing? Does it get better as antirejection meds are reduced? I still feel very new at this! Thank you!

    • Hi Monique, my name is Rex. I'm 2 years post liver transplant as of January 9th. I have never had any issues with anemia.Im on 500 mg. of mycophenolate, twice daily and 1 mg. of tach twice daily. Also 5 mg. of prednisone once daily. I'm on my first 3 month blood draw. My hair was falling out post transplant, it was from the ursodial. I started on tach, switched to cyclosporine. It made my hair grow like I was on "hairoids"! The took me off because of rejection issues. Sorry to ramble on, i just want you to know that 9 months is still pretty early. My body was still going through a lot of changes at that point.It takes time to get dialed in. Hang tight, every day is a gift, as only we know!

       

  • HI, I'm new to the group and I'm 5 year post transplant.  I'm wondering if anyone had issues recovery psychologically?

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