I'm posting on here on behalf of Mum, who has AL Amy (UK). Hoping to bring some hope to those with AL, and also get some feedback! Would love to hear your experiences.
I posted a couple comments, back at the end of March, to say our family had been told Mum was in her final hours, and that she'd been transferred to hospice.
She was diagnosed with AL Amy (on top of MM) mid Jan 2026. Her NT-proBNP was 35,000 She underwent 6 weekly sessions of DaraCyBordD before she got too sick, picked up a severe chest infection and went into septic shock. The family were told on two separate occasions (in less than a week) that she was in her final hours.
She was in ICU for a week and a half, and hospice for a further three weeks, finally off the vasopressors and Oxygen and CRRT. However she slowly but surely recovered!
Her last DaraCyBordD was the 4th March.