We lost my daughter last night around 10:00 PM CDT to the rare autoimmune disease she'd been fighting for four years. Her fight was also against the medical establishments of two countries, trying to get the only drug showing any efficacy against GPA vasculitis. It's very expensive, but she'd finally gotten it prescribed and insurance-cleared. She'd suffered too much lung damage. The irony is that she was on her second infusion in two weeks, with a wait then of six months before the next, yesterday. She and I were messaging during slack moments in an all-day meeting I was caught in, while she was being infused. We messaged daily. Her O2 sat rate had been running in the 70s, and that can't be survived for long. Last night, she complained once again of difficulty in breathing and her heart stopped. She couldn't be revived...
