How My Life Changed After My ATTR-CM Diagnosis

When I was diagnosed with transthyretin cardiac amyloidosis (ATTR-CM), it felt like someone had taken the life I knew, shaken it hard, and set it back down in a shape I barely recognized.

I had watched this disease take my father in 2010, so when my own diagnosis came, it wasn’t just a surprise— it was a collision of past and future. I knew what ATTR-CM could do, and I knew life was about to change in ways I couldn’t predict or control.

I used to think I had plenty of time. Time to make memories, time to put things off, time to circle back to the people I love. But a diagnosis like mine forces you to start noticing your life in a way you didn’t before.

Changes I experienced after diagnosis

Suddenly, I paid attention to the small things: the sound of my boys laughing,
the way my husband would check on me without saying a word, the quiet moments when I realized how fragile— and how precious— my days had become.

Before ATTR-CM, I don’t think I ever slowed down long enough to understand how fast life was moving. I was busy being a wife, a mother, a daughter, a sister... busy taking care of everything and everyone. And then, overnight, I had to start taking care of myself.

Physical changes and their daily impact

Fatigue, shortness of breath, swelling— these symptoms didn’t just affect my body, they rearranged my entire schedule, my routines, and the way I functioned in the world. Cooking dinner became a two-step process: cook, then sit down and recover. Planning a trip meant asking myself, “How much energy will this cost me?” Even simple things like walking across a parking lot made me think
twice.

But the biggest change wasn’t physical. It was emotional.

The emotional and mental impact of ATTR-CM

When you’re faced with a condition that can shorten or reshape your future, you start thinking about what you’ll leave behind— not in a dramatic way, but in a deeply practical one.

I started writing journals for my husband and my boys. Not because I was giving up, but because I wanted them to always have my voice, my stories, my love, and the truths I hold close. I wrote about memories we’ve made, lessons I’ve learned, things I want them to know if the day ever comes when I can’t be here to say them myself. Those journals became my way of taking back a little control, a way of giving them something permanent in a situation that often feels so uncertain.

ATTR-CM changed the way I show up in my relationships, too. I’m more present. I say “yes” to moments and “no” to things that drain me. I don’t waste time on anger or old hurts. My priorities shifted from “getting everything done” to “loving the people who matter most.” And when you start living that way, life becomes both simpler and richer.

Living with this disease isn’t easy. It’s unpredictable, and it often forces me to do things differently than I want. But it has also made me more aware, more grateful, and more intentional. I’ve come to understand that life doesn’t have to look like the plan I originally drew up in order to still hold incredible value.

A new perspective after my diagnosis

Some days, I mourn the life I had before ATTR-CM—the energy, the freedom, the simplicity. But I also appreciate the clarity this diagnosis has given me.

I don’t rush anymore. I don’t take the future for granted. I don’t assume I’ll always have “later.” Instead, I live in the right-now, the today, the moments that are still mine.

My life after an ATTR-CM diagnosis is different, yes. But it’s also fuller in ways I never expected. I’ve learned that even when a diagnosis changes everything, it can also open your eyes to what matters most: the people you love, the time you’re given, and the legacy you choose to leave
behind.