Milestones

January 10th was my 117th infusion at Mayo clinic. This completed my drug trial that spanned 6 1/2 years. Not bad for someone that started this experimental treatment June 1st of 2015 and given less than a year to live.

To commemorate this achievement, my care team gave me a lapel pin that says “Celebrate Life” with 3 hearts. A few tears were shed. I’ve grown to love the team up there very much.

I will now transition this treatment to a local infusion center here in Springfield. While I will miss my friends at Mayo Clinic, I can’t begin to tell you how much less wear and tear on my body this will be. This is a win. Mayo will still supervise my care but I will only be going back 2-3 times a year versus 17.

I will return to Mayo the week of the 17th for the final drug trial tests. Milestones are good.

August 2021 Amyloidosis Update

Monday, August 16th was my latest treatment. I have now completed a little over six years of treatment on a twenty-one-day cycle. If my math is correct, that is #106, but who’s counting, right?

It would be nice to find a cure but for now I’m happy with stability, or at least slowed deterioration. I am still able to walk and use a keyboard, even though much slower than just a year ago. If all goes as planned, I will remain on the drug study till January 2023. At that time, I will be reassessed and transferred to one of the longer term approved treatments.

This is definitely a marathon and I appreciate everyone’s continued prayers and support!