And I Would Walk 500 Miles...
In the last 2 months, we've traveled 2,064 miles back and forth to Mayo Clinic.
Tony's had 45 tests with 6 specialists.
When your specialists are concerned by your case, you get 3 weeks of tests.
QUALITY OF LIFE
The Mayo Clinic tests confirmed Amyloids in every system tested - with the major quality of life impact in:
Neuropathy in Nerve Endings Burning & sensitivity in his feet/legs/hands This affects how much he can do in a day, how far he can walk, what it's like when our toddler steps on his toes
Autonomic Nervous System & Heart Digestive Motility, Breathing rate, Heart rate, Balance, Blood Pressure This affects how fast food moves through his body (10 min-1 hour), how deep he can breathe without coughing fits, how fast or slow his heart beats, and dropping blood pressure when he stands up or moves fast.
MANAGING MOVING PIECES
Getting healthcare for a rare disease, being a parent, and working a full-time job create enough moving pieces that it feels like you're playing chess.
We've had to change insurance, mid-application for Tony's life-saving medication. We're still in process of getting the medication called Wainua that will stop or slow the production of the Amyloids.
Tony has hATTR - Amyloids build up over time in each system causing an "Amyloid Load." Then that system starts to short circuit, deteriorate, or necrotize.
No current medication can reverse the symptoms Tony currently has. But we're hopeful we can stop new Amyloid production, and manage his current symptoms.
Tony's tried 4 different medications to manage his current symptoms. But nothing is helping the digestive tract issue.
We discovered it's not what he's eating that is triggering his stomach issues, it's called a digestive motility function issue.
Tony's had to get IV fluids because his body is so dehydrated.
He drinks electrolytes every day.
He takes Imodium every day.
He's lost close to 40 lbs.
His arms and his legs are losing muscle mass.
If you've seen Tony lately, you'll see a big grin on his face - but pain in his eyes.
He's helped me reframe my thinking more than once from "There's not a cure." to "There's not a cure yet."
Thank you for those of you who went out of your way to help while we were at Mayo Clinic.
Our parents have watched Corbin while we've been away.
They've mowed our lawn. They've cried with us, and prayed with us, and laughed with us.
They've washed our dishes. Found hotel rooms for us.
Sent us emergency funds.
Our friends who know about this sickness, or are just finding out - you are all so important to us. Thank you for responding, reading, or sharing our journey.
Living with hATTR
There is no current cure for Amyloidosis. But in the last 9 years, there are significant advancements in NEW medications that can slow the disease down, and change the story.
We believe that living with hATTR = living with hope.
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ABOUT THE AUTHOR
My name is Sue Skavlem.
I'm a visual messenger – not a doctor.*
My husband has Amyloidosis. And it took me a year of googling to understand what an "adult-onset multi-system genetic disease" was.
After learning that "Amyloids have the tensile strength of steel", I came up with the "Accumulating BBs Theory."
My hope is to promote awareness of the disease, update our friends & family on our journey, and create resources other families with hATTR can use.
*Information in this article is meant to inform, but is not medically reviewed, nor should it be used to self-diagnose. Please talk with a medical doctor about free genetic testing if you or a loved one may have hereditary Amyloidosis.
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