When Your Body Won’t Let Go of the Fluid

Living with transthyretin amyloid cardiomyopathy (ATTR-CM) has made me pay attention to things I never thought I would spend so much time thinking about.

My ankles.

My stomach.

How my shoes fit.

Whether I can breathe lying down.

How many bathrooms are between my house and wherever I am going.

And, of course, the scale.

Welcome to the glamorous world of managing fluid with heart failure.

Some mornings I wake up and things aren't too bad. My legs look pretty normal, my stomach isn't overly swollen, and I think maybe my body and I have finally decided to cooperate.

Then seemingly out of nowhere, I blow up like a clownfish.

My stomach gets hard and uncomfortable. My legs swell. I feel heavier. Breathing gets more difficult. I can look at my body and know there is fluid hanging around that shouldn't be there.

It's amazing how quickly things can change.

When fluid retention with ATTR becomes part of everyday life

Before ATTR-CM, I never thought much about fluid retention. Now it's something I have to consider almost every day.

ATTR cardiac amyloidosis makes the heart stiff, which means it doesn't work as efficiently as a healthy heart. For those of us living with heart failure because of ATTR, fluid buildup can become part of the package.

But "fluid retention" sounds so simple when you read it in a medical article.

Living it isn't simple.

It's uncomfortable.

It's exhausting.

And sometimes it's scary.

Why I can't lie flat anymore

One of the biggest changes for me is that I can no longer lie flat comfortably. I have had to adjust how I sleep because breathing becomes harder when I'm flat. That's one of those symptoms that makes the reality of heart failure hit a little differently.

My body is reminding me that my heart isn't working at the top of its game.

How summer heat makes swelling worse

Then throw summer heat into the mix.

Heat and I used to get along much better. Now hot weather can make the swelling and discomfort worse. Living in the South means avoiding heat isn't exactly easy, so summertime adds another layer to something I'm already trying to manage.

Diuretic side effects nobody talks about

When the fluid increases, sometimes the answer is more diuretic.

And yes, it helps.

But there's a part of that conversation patients don't always talk about.

If I increase my fluid medication, there are days when I might as well cancel my plans and stay home.

Because I need a bathroom.

A lot.

That creates an interesting decision when you're trying to live with a chronic disease without allowing that disease to become your entire life.

Do I take the extra medication now?

Do I have somewhere I need to go?

How long will I be gone?

Will there be easy access to a bathroom?

Can I wait until I get home?

Meanwhile, the fluid doesn't particularly care what I have planned.

That's why managing heart failure isn't always as straightforward as "take this medication when your swelling increases."

The medication may be doing exactly what it is supposed to do medically while still creating a very real challenge for the person taking it.

I still want to live my life with ATTR

I'm 48 years old. I have a husband, kids, responsibilities, places I want to go, and memories I still want to make.

I don't want every decision I make to revolve around ATTR.

But sometimes it does.

There are days when I have to choose between what my body needs and what I had planned. Sometimes I have to change plans. Sometimes I have to stay home. Sometimes I push through because there are things in life I simply don't want to miss.

That's the balancing act.

I'm trying to stay ahead of the fluid without allowing the management of it to take over everything.

What I want doctors to ask about fluid retention

For medical professionals caring for people with ATTR-CM, I think that's an important part of the conversation.

Don't just ask us whether our ankles are swollen.

Ask whether the swelling is changing what we're able to do.

Ask how we're sleeping.

Ask whether we're avoiding our diuretic because we're afraid to leave the house after taking it.

Ask whether managing our fluid is interfering with work, family activities, appointments, or the things that bring us joy.

Those answers may tell you something a number on the scale can't.

Because living with ATTR-CM isn't only about keeping the heart as stable as possible.

It's also about protecting the life happening around that heart.

Some days my body cooperates. Some days I'm swollen, uncomfortable, and frustrated. And some days I feel like I'm constantly trying to catch up with fluid that got a head start.

That's life with heart failure for me.

Take care of the heart.

Watch the fluid.

Find the bathroom.

And somewhere in the middle of all of that, keep living.