Update

August 9, 2009 at 9:25 pm Leave a comment

I never wrote an update about our nephrology appointments. In general they were good and the boys are status quo. Max is extremely status quo. The only change with him is that he needs to start taking an over the counter iron supplement because his red blood stores are low, which is extremely typical with ARPKD. Other than that all is as good as it could be with ARPKD. He has 100% kidney function, has extremely good platelet counts, has kidneys that are not so huge, has a spleen that does not come below his rib cage, and has no restrictions.  Sounds good to me for now. As far as Gabe goes…. well he is also fairly status quo. He still has 100% kidney function which is amazing and he also has good platelet counts, although not as good as Max. He also needs iron for low red blood stores.  He is also not growing as well as we would like so we need to see a renal dietician.  His kidneys are also very large – 10 cm each, which are bigger than Max’s.  This could be one reason why he isn’t growing as fast as we would like for him to.  And since his kidneys are so huge our doctor feels he will need protective padding when he plays any type of sport not just contact ones.  I know in the scheme of things protective padding really isn’t a big deal but it’s just something new to think about. Ugh.  He also needs an echocardiogram to make sure his heart muscle is not enlarged because his b/p’s have been slightly higher than we would like for them to be.  

And Max will be having the mole removed from his ear this Friday. Really a no big deal surgery and hopefully only about 5-10 minutes under anesthesia, but I wish it could have been done in her office rather than in the OR with general anesthesia.  

So… in general fairly status quo around here with some minor things that of course bother me and stress me out.

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Entry filed under: Uncategorized.

8 way kidney swap Memories

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