Fifty Shades of Grey

The world of transplant is anything but black and white and Erin's journey seems to be every shade of grey in between. Her lung function on Friday dropped to 50%.  Based on the conversations with her doctor the previous week, anything below 60% would trigger the start of photopherisis therapy.  However, Erin continues to mystify the doctors. The 3 days leading up to her lung test she was walking 1 to 1.5 miles non-stop, she had energy and she looked great. I would have bet money on it that her numbers would be in the 60’s, and yet...  So we are taking a slightly different turn and a new philosophy that Erin is going to create her own unique (albeit confusing) transplant journey and that while she isn't presenting like a typical transplant patient, maybe she is presenting as a typical Erin.  This might be wishful thinking, but it beats not stressing out as much about the details..  St. Louis was able to discharge us on Friday so she could make it home for the Homecoming game and then the dance Saturday night.  We will continue with one IV med and one inhaled antibiotic for a week with lung function tests repeated in Milwaukee on Monday and Friday, followed up by a conversation with her doctor about the next step.




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