So I haven't posted in a couple of months. Let's see Shawn only had 4 photophoresis treatments due to a glitch in insurance and at first this was a maddening turn of events but things have turned out quite nicely.
Shawn's FEV1% has continued to improve with only the Azithromycin, he hovered in the 40's for over a year and now BAM, 50 and last checked he was at 55%. He feels great and looks even better.
We just returned from Hawaii. How amazing and grateful I was everyday looking over at him and realizing how lucky I am. How blessed we are. How close I have been to losing him and how happy I am to have him in my life.
He drives me crazy nearly everyday but that's Shawn and I love him.
Rest in Peace Aunt Marybeth
2 years ago