Good News

My liver enzymes are going down.  We are very glad to hear this!  It looks like increasing my immunosuppressant is helping.  Still treating the other stuff.  Grateful the liver is looking better and grateful for your prayers.

GVH.

No more question mark.  They're officially calling it.  My liver enzymes continue to rise, which, along with the symptoms I've been developing over the last month or so, indicates graft vs host (gvh).  It's affecting my skin, my eyes (discharge), and my mouth (dry mouth plus sores). Right now, they want to control the symptoms. They've increased my immunosuppressant dose.  I'm supposed to wear sunblock every day, because even walking to my car exposes my skin to the sun, which can aggravate the gvh.  I'm using a topical steroid on my face (it is red and peely -- truly like a bad sunburn that won't heal), and OTC things for my eyes and mouth.  If my liver enzymes jump really high, they'll put me on an oral steroid.  I go back Tuesday to check again.  They're keeping a close eye on me. As far as how I feel, mostly annoyed by my eyes (stuck shut every night and goopy all day), a little difficult to eat with the mouth, and my face feels really hot.  But, I'm always cold, so maybe a hot face isn't so bad.  Mostly, I feel pretty run down.

GVH?

I may be having some graft vs. host (gvh) symptoms.  I went to the doctor last week and showed him my "rosy" complexion.  Rosy may be somewhat of a euphemism.  My face looks like, as he put it, I spent a week in Florida without sunscreen.  The skin on my trunk is kind of peely, too.  Add to those my dry mouth (which turned into a lovely thrush infection), and the docs think we're looking at some gvh.  I go back on Tuesday to have another look at me.  They were going to start tapering my immunosuppressants, but with things as they are, he left me on the current dose.  If it is gvh, tapering would only give my new immune system more room to recognize my body is foreign and attack all the more. I just need to remind my new cells I am their new home.  Come on in and unpack, friends, because this is your new life.  No need to fight. Let's just get  along.  Glad to have you on board.

  We'll see what happens after Tuesday.