Tag: Amyloidosis

It’s been almost a year since I updated on my health as it pertains to my amyloidosis. As you know I retired, moved to a new state, and new treatment all in the past year. Trying to navigate the healthcare system, Medicare, and different state laws and insurance has been a huge challenge. My cynical side says the machine just wants you to quit, give up and die. The amount of hoops, rules, laws, and general bureaucratic red tape makes me think no one has ever done this before. But, I push on.

It’s mid April and I think I am set, at least for 2024 until next year, when I start it all over again with new rules and new deductibles.

I have been on the new quarterly treatment (Amvuttra) since February 13, 2023. I was without treatment for almost three months before the drug company and a medical provider could agree on money before they would start. During that time my health declined significantly and to this day seems to continue. I feel like, in the photo, I’m walking up an escalator.

Symptoms include further decreased mobility, headaches, and stomach/digestion issues. I don’t know if some of this will reverse now I am being treated again or if this is the new normal. All I know is, I’m tired.

Thoughts and prayers are appreciated!