Improved creatinine AND appetite : FSGS Sucks

Haven't updated in awhile....just honestly haven't felt like writing much.

A bit of good (ok, probably great) news is that my creatinine is back down to 1.6 after 1 1/2 weeks off of Prograf and bactrim.  It appears that the Prograf was becoming toxic, explaining the sharp increase in my creatinine and all of the other symptoms.

A negative side effect of this, however, is that I've totally regained my appetite.  I had lost about 12 pounds in the last month, probably due to not eating / lack of appetite.  Sadly, I think I've gained it all back in a few short days.  I am CONSTANTLY feeling hungry. I've been on a salt binge too, which is exacerbating the weight gain.  Vicious stupid cycle.  But DAYUM, food tastes GREAT again!

So I guess now I'm preparing for Dr. Fervenza's study.  I'm also going to get a local nephrologist to handle my primary care.  I'm not getting the warm and fuzzies that I need with Dr. Fervenza right now...it just seems as though, since he has no other treatment options, that I can't be "treated" anymore.  What I mean by that is that he isn't very good about preparing me for the future...discussion options and what not, and that's what I need right now.

I'm realistic and sometimes optimistic, but that in no way belies the fact that the inevitable WILL happen someday.  My sanity requires preparation and lots of discussion.