Tag: Attr Amyloidosis

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Navigating a Rare Disease

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.

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Joyous Leadership Has a Story

Listen in as I discuss Joyous Leadership with Roger Sargent on his weekly business consulting podcast. Roger runs a business consulting/coaching company out of Seattle, Washington. We will be collaborating on a few topics in the coming weeks and will invite you in to listen.

Click here listen now> CLICK

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The Struggle

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!

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New Meds – New Treatment

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. . .

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Amy Attack!

I had a little unplanned downtime at the end of July. I spent five days visiting my friends at St. John’s Hospital after the amyloidosis decided to attack my stomach and then my heart. I had already received a cardioversion a week prior and thought I had everything under control until early one morning I woke up with extreme abdominal pain and vomiting.

After several hours in the ER, I was admitted to my room for overnight observation. All seemed okay until the next morning when I started round two with the vomiting. As the day before, the pain and vomiting subsided by nightfall and all was well. The next morning, I was anxious to be released and was cleaning up when my heart went out of rhythm as it did the week before. Just so you know, you get a lot of unwanted attention when that happens. After a few meds, the heart seemed to slip back in rhythm, and all was good once again.

I was prepping for discharge when my heart doctor decided to keep me and put me on a new medication that required hospitalization. Long story short, the new meds seem to be working and I’m out doing what I do best – trying to work. Hopefully the stamina will return soon.

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Close to Home

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!