Category: Amy – The Blog

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!

There is a new treatment approved for Amy patients that has the same efficacy as my current treatment. As you recall, I have done a chemotherapy treatment every 21 days since June 1, 2015. That works out to about 17 times per year. The new treatment is an injection in the arm, stomach, or hips that I would receive one time every three months or only four times a year!

It is currently pending with my insurance company but the thought of going from 17 to 4 times a year is life-changing. I am so excited about the freedom it gives me to live closer to a normal life. It is still not a cure but we are getting closer.

Let’s pray insurance approves and I can afford the remaining amount. If not, well 17 is better than nothing. . .

I have been traveling to Mayo Clinic for almost seven years to take a chemo infusion for my hATTR Amyloidosis. Starting January 31, 2022, I was able to transition off the drug trial and begin taking my infusions locally here in Springfield. I love my Mayo family, but this move has been a major stress relief.

Mayo Clinic will still manage my disease and supervise the infusions. I will also return to Rochester a few times each year for follow-up visits and testing. This disease is a bugger, but I have good people helping me manage.

I am thankful to all of you who have prayed, called, texted, and sent cards of encouragement. Some days that’s the only thread that keeps me hanging on.

Blessings!