When you think about transthyretin amyloid cardiomyopathy (ATTR-CM), you probably think about your heart. Fluid build-up. Shortness of breath. Fatigue. Swelling. All the things we hear about when we talk about cardiac amyloidosis. But your legs? I never really thought much about my legs. Then again, that’s the thing about rogue DNA — it doesn’t seem to care about following the rules.
The other night, my sister and I went to the movies. We were walking up the steps to our seats, and I happened to watch her. Step. Step. Step. One foot on one step; the other foot on the next.
It’s a natural movement most people probably haven’t thought about since they learned to climb stairs as a toddler. But I noticed, because I realized I can’t do that anymore. I put one foot on the step, bring the other foot up beside it and then move to the next step. Step. Together. Step. Together.
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Somewhere along the way, that became my normal. When did that happen? I honestly don’t know. Was it slow? Did my legs get a tiny bit weaker over months or years until my body figured out a different way? How in the world did I not notice?
We adjust with time
Maybe some of you reading this know exactly what I’m talking about. You start using the railing when you climb stairs. You pull yourself up a little more with your arms. Maybe you push off the chair when you stand. Because you know getting up will be a whole production, you avoid getting down on the floor.
None of these things happen overnight. We adjust with time.
That’s what surprised me the most. My body had figured out a new way to climb stairs before my brain noticed. Sometimes, I think we’re so busy living with ATTR-CM that we don’t notice how much it has changed the way we live.
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Of course, my mind immediately went to my dad. I watched this same disease take his mobility from him. I could see the changes happening to him, but I couldn’t possibly understand what it felt like. Now, I wonder: Did Dad have moments like this? Did he ever watch someone walk up a flight of stairs and realize he couldn’t do it anymore? Did he wonder when that changed? Did he wonder how he hadn’t noticed?
Did he wonder like I’m wondering now: What’s next? That’s the question I don’t particularly like.
My story is mine to live
I know my dad’s ATTR-CM story isn’t my story, but it’s hard not to compare. He didn’t have the treatment options I have. We know more now. We’re diagnosing it earlier. Things have changed. But sometimes, when my body does something that reminds me of his journey, I’m still his daughter.
I watched my dad battle stomach problems. Now it’s my turn
And it scares me. I think we’re allowed to say that. That night at the movie theater made me realize something else: We spend a lot of time talking about test results, numbers, scans, heart function and lab work. These things absolutely matter. But so does this: I don’t climb stairs the way I did last year.
So does needing your arms to get out of a chair. So does stumbling more. So does noticing your legs don’t have the strength they once had. These changes are worth paying attention to and mentioning to your medical team.
It’s not that we should spend every morning taking inventory of everything ATTR-CM might be changing. I don’t want to live my life constantly searching for progression; I want to live. But there’s a difference between living in fear of your body and paying attention to it.
Maybe that’s what those movie theater steps taught me: Our bodies sometimes compensate long before we consciously recognize that something has changed.
I don’t know how long I’ve been doing the “step together, step together” thing. And I don’t know what’s next. But I know what I can do today. I can notice. I can tell my doctors. I can give myself grace when my body needs me to do something differently. And I can keep living my life, even if sometimes I have to take it one step at a time.
