. . . Or what happened between November and now.  I got sick.  Lots of sick.  Apparently prograf + cellcept + steroids + daratumumab-still-in-your-system = petri dish for anything contagious.  So I’m going to go through this like the lightning round on a game show because it was un-fun (and frequently involved illnesses of an, shall we say, intestinal nature).

January was “Fever of Unknown Origin” month.  When you are immuno-suppressed, Fever of Unknown Origin (FUO) is cause for concern when your temp is over 100.4, because the doctors have to try to figure out what is causing it.  In my case, one Austin hospital visit and one Mayo clinic visit later, we still don’t know.  The speculation is: “a virus.”  To that, I say FU, FUO!

February was my regular check-in and check-up at Mayo.  It turned into “C Diff and See Your Way to the Mayo Hospital” month.  I got there on a Sunday and got sick by Sunday night.  Thankfully, Delaney Ozmun was in Rochester with me, so she could get me everywhere I needed to go.  We enjoyed the truly arctic weather together and shared a lovely view from my “in isolation” hospital room for a few days.

And so on and so forth until now.  I am feeling better.  Almost done with antibiotics for whatever landed in March.

The end result of the sick stuff is that Dr. Zand decided that I needed to be off all immunosuppressants.  They aren’t really helping the kidney disease, and they are really making me susceptible to any old germ lurking out there and waiting to land on someone.  I’m down to 5 mg of steroids a day, soon to be to 2.5 mg, then soon to be (gasp) without kidney medication.  For the first time since 2006.  Wowser.

The next road should begin in June, with eculuzimab infusions.  This is a new treatment that Dr. Zand has recommended.  And wouldn’t you know that eculuzimab is currently one of the most expensive drugs in the United States?  We are dealing now with the insurer, who says that eculuzimab has not been demonstrated to be medically necessary for my disease.  What a surprise.  Dr. Zand goes to battle with them on Tuesday in a peer-to-peer review.  She’s tough.  I’d bet on her any day.  But fingers and toes are crossed for good luck!  More to come . . .