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marta
No Subject
Sat Jun 7, 2014 9:08am
71.237.138.184

TODAY MARKS MY ONE year liver anniversary. I remember this day like it was yesterday.i just allway thought I was going to live my whole life with citrullinemia. I never imagned that my citrullinemia would make me so sick to the point of liver diease and every 6 days in the hospital with high ammonia unable to be kept stable at home on a low protein diet and medicine. I am thankful for the selshish decision of the donor family made at the time of their loss. I have witten to them but I got no response.it is weird cause I am use to being sick and in the hospital not well and at home. I am still not willing at all to eat meat or fish cause it naseutes me and I have nothing but bad memories from it. I will it cheese and eggs cause I use to eat a small bite of each. when I eat high protein foods I am still even after a year afraid I will get sick.i tire easly and it frustrates me. marta

    • Happy Anniversary!Karen Worley, Thu Jun 19 7:03am
      Happy Anniversary Marta! I have followed your story for 15 yrs now and I couldn't be happier for you! May your strength and endurance continue to grow ten fold as time goes on! Best Always, Karen
    • CONGRATULATIONS!Joe Marquez, Wed Jun 18 10:34am
      We never got a response from our blessed donor family either. Here's to your new life and that hoping you get more endurance as each day passes! - Joe
      • for joemarta, Thu Jun 19 9:50am
        hi joe, thank you. right now for three weeks I have been dealing with dealbatating migraines thought was the prograff so I went off of it and onto rampamunee for 2 months I have been on that. these... more
        • seizure medicine - migrainesJoe Marquez, Fri Jun 20 9:25am
          Justin takes a seizure medicine. I wonder if he would have had the migraines without it. Justin used to have rejection episodes with Prograf but hasn't since his main immunosuppresent has been... more
          • for joemarta, Sat Jun 21 1:15pm
            joe, what anti seziuer medicine is Justin on? I am on Topamax. I have been on 25 mg for 4 days and so far although to early seems to work. the nerulogist over the next 4 weeks is working me up to 100 ... more
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