Surviving a Cardiac Myxoma & Why Awareness Matters

Three months after moving to Germany, in the middle of a global pandemic, my body started to shut down.

At first, nothing made sense. I was exhausted, weak, and something felt off in a way I couldn’t explain. What followed was a week of uncertainty—doctors searching for answers, tests, and more questions than clarity.

Until they found it.

A 5 cm tumor in my heart.

I had never even heard of a cardiac tumor before, let alone something called a myxoma. Within hours, everything changed. I was transported by ambulance to a larger cardiac hospital, and the next morning, I underwent emergency open-heart surgery that would ultimately save my life.

What Is a Cardiac Myxoma?

A cardiac myxoma is the most common primary tumor of the heart, but here’s the reality—heart tumors themselves are incredibly rare.

Most myxomas form in the left atrium of the heart and are considered benign, meaning they are not cancer. But “benign” doesn’t mean harmless.

These tumors can:

Block blood flow through the heart

Break apart and cause strokes or embolisms

Mimic other illnesses, delaying diagnosis

In my case, it was already affecting my entire body.

 

Why Do They Happen?

This is one of the hardest parts—most people never get a clear answer.

About 90% of myxomas are sporadic, meaning they happen randomly

A smaller percentage are genetic, and linked to rare conditions 

There’s no lifestyle cause. No warning sign. No prevention.

It just… happens.

 

Who Is at Risk?

Even though these tumors are rare, patterns do exist:

Most commonly found in adults between 30–60 years old

More frequently diagnosed in women

Typically appear as a single tumor in sporadic cases

I fell right into that category—yet had never heard of it before.

 

The Symptoms That Don’t Add Up

One of the most dangerous aspects of a myxoma is how easily it hides in plain sight. Symptoms can include:

Shortness of breath

Fatigue or weakness

Fainting or dizziness

Stroke-like symptoms

Sudden vision impairment

Unexplained weight loss or fever

They often mimic other conditions, which is why diagnosis can take time—like in my case, time that can be critical. 

 

Surgery, Survival, and the Long Road Back

My surgery lasted five hours.

I woke up 24 hours later with an external pacemaker, which was connected to my heart. The leads came out of my lower chest to a box I had to carry around. Sitting in a chair was so difficult, the pressure it put on my heart was intense, and walking was so hard – I couldn’t go far.  By the time I was discharged, I had lost over 20 pounds and could barely recognize my own strength—or lack of it. 

Recovery wasn’t straightforward.

There was:

Physical therapy

Speech therapy due to vocal cord damage

Cardiac rehab… where I was often the youngest and weakest in the room

Eventually, I worked with a trainer to rebuild strength, mobility, and confidence.

But recovery isn’t just physical.

It’s emotional. Mental. Identity-shifting.

 

Will It Come Back?

This is the question that stays with you.

For most people with a sporadic myxoma, the recurrence rate is low:

Around 1–3%

But it’s not zero.

In rare genetic cases, recurrence can be higher, which is why ongoing monitoring matters.

I now have yearly heart scans, because even though the tumor is gone, the awareness never is.

 

The Part No One Talks About

Before this happened, I didn’t know heart tumors existed.

Most people don’t.

And that’s the problem.

Because awareness could mean:

Earlier detection

Faster diagnosis

Lives saved

Cardiac myxomas may be rare, but for the people who have them, they are life-altering.

 

Why I’m Sharing This

This is where my story shifts from survival to purpose.

There is very little research on cardiac myxomas. Many doctors will go their entire careers without seeing one. Patients often feel isolated, confused, and searching for answers that don’t exist in one place.

I want to change that. I want to:

Share real experiences

Create awareness of rare cardiac conditions

Support research and future understanding

Advocate for patients who feel unseen in rare diagnoses

One day, I hope to be more involved in cardiac support groups and help bring attention to conditions like myxomas where care and recovery continue long after surgery.

 

Living Layered Means This Too

“Living Layered” has always meant evolving through every season.

But this season changed everything. It taught me:

That health is not guaranteed

That strength can disappear—and come back differently

That survival is only the beginning

I’m not starting over. I’m building layers—ones shaped by resilience, awareness, and a deeper understanding of what it means to truly live.

 

If You Take One Thing From This

Listen to your body.

Push for answers.

And never assume that something rare can’t happen to you.

Because sometimes, the rarest stories are the ones that matter most to tell.

 

* Disclaimer: This post shares my personal experience with a cardiac myxoma and open-heart surgery. It is intended for informational and storytelling purposes only and should not be considered medical advice. If you are experiencing symptoms or have concerns about your health, please consult a qualified healthcare professional or seek medical care promptly.