One of the things I didn’t fully expect with transthyretin-mediated amyloid cardiomyopathy (ATTR-CM)—even though I probably should have—was how much it would affect my stomach.
I watched my dad live with this disease. I saw the changes it brought into his life, not just in the big, obvious ways, but in the quiet, everyday moments too. I remember the way he would sit down to eat and only manage a few bites before pushing his plate away. I remember the bloating, the nausea, the frustration that came with meals that once felt normal but slowly became a battle.
Somewhere deep down, I knew these symptoms were part of the reality of ATTR-CM. But there is a vast distance between knowing something in your mind and finally living it in your own body.