One thing I never expected — even though I should have — was how much transthyretin cardiac amyloidosis (ATTR-CM) would affect my stomach.
My dad had this disease, and I watched him deal with the same issues: the bloating, the nausea, the barely-being-able-to-eat days. So somewhere inside me, I knew it was coming. But knowing something in your head is very different from living it in your own body.
When the symptoms started — the early fullness, the discomfort after meals, the days when food just didn’t sit right — it hit me in a familiar way. I remembered watching my dad push his plate away after a few bites. I remembered how frustrated he would get. And now, I was sitting at my own table, feeling the same heaviness, the same frustration, the same “here we go” moment.
Even with all that, it took me a little while to admit what was happening. At first, I blamed stress. Or eating too fast. Or being tired. But deep down, I recognized the pattern.
ATTR-CM doesn’t just affect the heart — it can affect the nerves that help your stomach and intestines move food the way they’re supposed to. When those nerves slow down, everything else slows down with them.
That’s when meals start to feel different. The bloating. The nausea. The feeling of being full after just a few bites. For me, it’s not just physical — it’s emotional, too.
I used to be the one who cooked full meals, fed everyone else, and then sat down last. I loved food. I loved cooking. But now I have to take smaller bites, eat slower, take breaks, and sometimes lie down afterward because it wipes me out. And the hardest part? People don’t see it. They see you pick at your food and think you’re being picky or dieting. They don’t know that pushing the plate away is easier than dealing with the hours of discomfort that follow.
But the truth is: this is part of ATTR-CM. I watched it with my dad, and now I’m navigating it myself. That’s a strange mix of grief and understanding — grieving that it’s happening, but understanding that this is how the disease behaves.
Still, I’ve learned ways to make it easier on myself. Smaller meals. More frequent snacks.
Paying attention to what my body can handle that day instead of forcing it. And giving myself grace — because this isn’t something I caused or something I can “push through.”
If you’re dealing with these stomach issues, please know you’re not alone. And if amyloidosis runs in your family like it does in mine, you may recognize these symptoms long before someone explains them to you. Trust that instinct. Talk to your doctor. Advocate for yourself.
Every day with ATTR-CM requires adjusting, learning, and listening to your body in new ways. And even though this is a hard part of the journey, I remind myself that I’m still here. I’m still learning. I’m still finding joy — even if it comes in small bites now.
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