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marta
for joe
Thu Jul 4, 2013 4:22pm
71.237.138.184

hi joe, how long ago was your son transplanted? I was transplanted june 7th. I miss my citrullinemia and I lost my metabolic dr's cause they were like a second family to me.every time I eat protein now I think I am going to get high ammonia because now it's oppisate of before and I need lots of potien now. I am on 80 grams of protein. they went down on predinose but they went up on my prograff and magnusuim. my labs all look good. they say I got a good liver. the staples were suppose this week but I am still leaking on the right side of my icison and they are afraid if they take them out my incision will open up and I will have an infection. would you transplant if you had to do it over again? what is your son's favorite food? mine is scrambled eggs.marta

    • Re: for joeJennifer McElroy, Mon Jul 8 10:07pm
      Marta, I am so happy to hear that you have finally been transplanted. I know Josh is a new kid, feeling so much better than he ever has! I pray things continue to go smoothly and take this change one ... more
    • Re: for joeJoe Marquez, Mon Jul 8 8:54am
      Marta, That is so cool you get to have as many scambled eggs as your heart desires! Perhaps you can still stay in touch with your metabolic team. Justin has seen his old metabolic team a few times in ... more
      • liver transplantfor joe, Wed Jul 10 10:45am
        hi joe, well they keep increasing my magnsuim all the time in clinic cause it's low but I have had low magnsuim since 2006 and have been on magnsuim since then and even though I am on maggnsium my... more
        • re: in ER throwing up bileJoe Marquez, Thu Jul 11 9:14am
          Marta, You offer a unique opportunity for us parents to talk to an adult about what going through the transplant experience is like. I'm very sorry to hear yesterday you had to endure throwing up... more
          • for joemarta, Thu Jul 11 5:28pm
            joe, no they didn't really know the cause of throwing up bile since I had not eaten or drank anything all day. I am in Oregon?where are you at? does your son still see the liver dr's. they keep... more
            • Re: for joeJoe Marquez, Fri Jul 12 9:54am
              Marta. . .I hope they can figure out how to keep you from throwing up bile. We are in Denver. Justin sees his liver doctor once a year. Oh no. . .hope there's a way to make the magnesium more... more
            • martamindy, Fri Jul 12 7:53am
              Hi Marta, What drugs are you on? How much Prograf? What other antirejection drugs? lucky your staples came out quickly, brett was longer. Brett is almost 2 years post transplant. He is doing well... more
              • RE: BrettJoe Marquez, Thu Jul 18 9:02am
                Love reading that Brett is doing well! Amen.
                • thanksmindy, Sat Jul 20 8:57pm
                  Thanks Joe, Remember those daily emails of panic? He had such a hard first year post transplant.... between the weekly paras, CMV, prograf toxicity, too many hospital stays it was really hard. I am... more
                  • Re: thanksJoe Marquez, Mon Jul 22 11:02am
                    I hate that that first year was so rocky. Wonderful to read he is back to work and all activities and weaning meds down! Maybe in awhile he can even get those draws down to every 3 months or so.... more
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