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New Member with questions

hi, i had a liver transplant on october 18 2017 and i was wondering if there are any problems i should watch for. Also my name is Sophie and i am 12 years old ill tell you my story, and i would love to hear yours to. Around the end of aug my whole family caught a virus and when everyone else got over it i was still having dihariha so my mom took me to the doctor on 9/11 (which i think is pretty funny) and my mom told my doctor that i was having diarhea and a few other sympotoms, and my doctor dissmissed it saying it was just going around, and after a full week we went in agin and told her i was still having it  and I noticed me eyes were yellow,  after the first blood tests and multiple back and forthes from my house to the hopital with samples she finally told us my numbers were high and after yet another week i was referred to a pediatric Gi specialist. That night i was prescribed prograph and told to go to the emergency room and they sent us to a hospital 2 hours away and finally three weeks later i had a docter that could tell me that i was in FULL liver fauiler which apperntly no one else could. and a few days later i was diagnosed with type 2 autoimmune hepititis and acute liver fauiler,  after another couple of days he said that my numbers were going down but not as fast as he wanted them to so he said that we were flying to a hospital in a different state on a private jet, The Kangaroo Crew flew it so we did not have to pay for that trip. in the new hospital i had gained alot of water and after a few more weeks full of having water drained and ultra sounds they said, well you need a liver transplant, we are going to put you on the 1 A list. i was completly healthy before this so it was a shock. (they said i needed a whole liver,) and in less than a week the third liver was the right one and i had a very succesful transplant. I realize most people wait years for a transplant i was very blessed especially becuase after the transplant they said my liver looked alot worse than exected and that they thought it was an acute on chronic liver faiuler, so if the would have known it was chronic i would probobly still be waiting. I thank god.

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Replies

  • Hi, Sophie! My name is Katie and I am 19 years old :) I had my liver transplant when I was 17, but I can relate to a lot of your story! My transplant was extremely unexpected and I found out because my eyes started turning yellow. However, I had to wait for a year on the list... but my first transplant immediately failed then I was placed as a status 1A. The doctors still don't know why it happened, but they think I had a type of autoimmune disease too. My second transplant went much better and it is has been over a year and I am feeling so much better AND now I am in college!

    If their is anything I can tell you is to stay positive! You seem like a super chill girl, so I'm sure this will be easy for you but after my transplant I had a major pity party for myself, like I was so happy to be alive but I kept asking why this happened to me. And then I felt guilty for being sad because I should be happy because I was alive.  So stay positive, girl! Try not to go down the rabbit hole of asking "why". Oh, and take your meds, those are really important, even though it can be kind of annoying :) They will go wayyy down after a year. I hope you are well and stay well. :)

    • thank you so much Katie.

  • Hi Sophie! Welcome! I am so sorry you have had to go through this. You sound very brave and mature. I had a kidney transplant 1yr ago Dec 13. I agree keeping up with labs for medication changes is very important. Absolutely do not skip medication doses. Follow your restrictions, diet, medications and you will do great I am sure! Life has taught me that everything happens for a reason. It will mold you into the person you grow up to be. Be positive, be happy, and don't let anything hold you back. With or without a transplant, you are still Sophie. Take care sweetness. Your friend, Chris

    • Thank you Chris, I hope your doing ok to.
  • Hi Sophie,

    I am so sorry you have had to endure all that you have and hope all is well with your Tx!  I have  had 2 kidney Txs in my life and though these transplants are different, some of the meds and routines are the same.

    Periodic blood work is one of the most important routines to maintain, as results will determine how your Tx is doing and whether your medication doses need to be adjusted, long before you ever "feel" anything!  I think the other liver Tx recipients here can advice you better on living with a Tx.  

    I wish you great success with your Tx and hope you enjoy many, many years in good health. Stay Well!

    • Thank you, i Knew about the blood work but didnt know that the medication could change. I hope that all is well with your Txs to.

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