Too much

September 3, 2009 at 10:55 pm Leave a comment

I found out that a 16 year old with ARPKD died a few weeks ago.  He had a kidney transplant a few years ago and then started to have liver problems.  He was on the waiting list for a liver transplant for over a year and died while waiting for that.  The liver part of this disease totally freaks me out…. CHF.  Congenital Hepatic Fibrosis. The thing with this disease is that every child is different, what I’ve been saying all along. And the thing with the liver is it’s scary and is ominous and no one really knows the course of the CHF related to ARPKD.  People say how easy it is to get a kidney transplant but they forget about the liver. But with the liver there is no dialysis and no easy transplant.  And no liver failure and usually normal liver function numbers. Which makes it harder to get a transplant. It’s a whole complicated thing with numbers and MELD scores and a whole bunch of other things that I have no idea about at this point and really, truly hope I never do. Is it naive of me to hope that since the boys are on the mild side then their livers will always be fine? Yes, I do think it is naive of me or maybe denial, but it’s how I’m going to stay for a while.

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Funny world The Walk

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