Re: joe
Wed Jun 4, 2014 10:01am

It might take awhile to build up your endurance. Justin sometimes lags behind his racing brothers and he leaves to sleep in for 12+ hours whenever he can. He take Rapamune, a little bit of Prograf, seizure medicine and ursodiol to keep the bile flow to his liver optimal. No predisone.
Justin got damage too from the high ammonias he had as a toddler but his brain has learned to compensate a lot.
Hopefully the longer you get out from the transplant the more endurance you'll get - but remember too that 40 used to be "over the hill" and I doubt any of our energy levels are going to get a lot better as those of us over 40 age :)

  • joemarta, Tue Jun 3 9:09am
    joe yeah this darn hip personally I think citrullinemia did 44 myyears of damage. had fun in Italy but because of having citrullinemia for 44 years I was not able to keep with my cousins when they... more
    • Re: joe — Anonymous, Wed Jun 4 10:01am
      • anonymousmarta, Thu Jun 5 8:52am
        hi there, yes I too tire easly as if I stil had citrullinemia. I seem to need at least 10 hours of sleep a night. I do pt for my bad hip but that exsuestes me for the next 3 days so I can't do... more
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