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.
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Transplant / Living Donor Info for me (edited)
I wish I would've had this post ready because I had so many people reach out to me after the last one that wanted to share my info. I...
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So, for starters, my blood type is O+, so my donor kidney will need to be O+ as well. HOWEVER....if you're blood type is NOT O+, there...
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I'm lying here right now in room 6B of the specialty infusion center at the U of M, and it's not going well My first blood press...
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