After 8 Hours of Brain Surgery, a Blood Clot Almost Killed Me: Nicole’s Story

After 8 Hours of Brain Surgery, a Blood Clot Almost Killed Me: Nicole’s Story

The Perfect Storm

I was diagnosed with Long COVID in August 2025.

In October 2025, I underwent an eight-hour surgery for Chiari Malformation — an experience that ultimately improved my quality of life.

However, about a week and a half after returning home, I developed a pulmonary embolism in my right lung — something that could have cost me my life.


Dismissed as a Flare-Up

At first, I dismissed the symptoms, assuming they were part of my ongoing long COVID flare-ups.

I had shortness of breath with the smallest amount of exertion: brushing my teeth, making coffee, getting up out of bed, taking a shower, and anything related to daily living.

Thankfully, my husband urged me to contact my neurosurgeon to report the changes I was experiencing.

I sent a message to the medical team, and they attempted to reach me throughout the day to instruct me to go to the ER immediately.

Unfortunately, I keep my phone on silent — so I had no idea they, or my husband, were trying to reach me.


The Call That Saved My Life

When they couldn’t get in touch with me, the doctor’s office called my husband at work.

Around 4:00 PM, we finally connected.

He told me to go to the ER right away and not wait for him to get home.

By God’s grace, my neighbor and close friend had taken the day off — by chance — and was able to drive me to the hospital much faster than my husband could have made it home.


The Perfect Storm

I never imagined I would experience a pulmonary embolism.

Looking back, I had several risk factors: major surgery, a 5+ hour car ride home afterward, a genetic predisposition — Factor V Leiden, homozygous — and chronic inflammation from other underlying conditions.

It truly was the perfect storm.

I thank God every single day that I am still here.

Life feels different now — more precious.

Each day is a gift, and one I don’t take for granted.


Find the Right Team

I started having shortness of breath in 2022, shortly after my second time getting COVID.

The pulmonologist I was seeing at the time did send me to get different tests — but I felt like each time I’d go for follow-up visits, he didn’t know what to do with me.

Even after I had not seen him in a while and I got this blood clot recently in October 2025, it was suggested that I make an appointment with him shortly after I got released from the hospital.

When I met with him, I felt like he completely blew me off after I shared my new diagnosis with him.

I eventually came to the conclusion that it was time to move on and find a new pulmonary team that was going to find me answers.

I believe I have finally found that team of doctors and we are working closely to find out why I continue to have shortness of breath.

I have five tests upcoming over the next couple of months that will hopefully give us some answers.

The pulmonary embolism has dissolved — but I still have shortness of breath.


How This Changed My Life

Having a pulmonary embolism has completely changed my life.

I wake up every day feeling more grateful for every little moment of each day of my life — interactions with friends, coworkers, family, neighbors, and my pets.


What I’ve Learned

I have learned that I should always be my own advocate.

No one else is going to advocate for you like you can for yourself.

You know your body best — so don’t ever ignore your symptoms or dismiss the way you feel.

Follow your gut and take care of yourself.

You matter!


About My Genetic Testing

I don’t have a clotting disorder, but I do have one of the two Factor V Leiden gene markers for clots.


What I Want Others to Know

Don’t let anyone ever make you feel like your feelings don’t matter.

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The personal story is intended for informational purposes only. The National Blood Clot Alliance (NBCA) holds the rights to all content that appears on its website. The use by another organization or online group of any content on NBCA’s website, including patient stories that appear here, does not imply that NBCA is connected to these other organizations or groups or condones or endorses their work. Please contact info@stoptheclot.org with questions about this matter.

Additional patient stories

Caden Byers, a 23-year-old college baseball player diagnosed with bilateral pulmonary embolisms following a flight home from Hawaii, weeks before his college graduation.

Annie Hanson, a DVT survivor diagnosed at 23 weeks pregnant after symptoms were dismissed as pregnancy pain — with a clot that had grown from her ankle to her abdomen, requiring an emergency thrombectomy at UCLA — later found to have Factor V Leiden and May-Thurner Syndrome.

Carter Johnston, a massive saddle pulmonary embolism survivor diagnosed on March 27, 2025 after three weeks of dismissed leg cramp symptoms — with his right lung almost completely occluded and no personal genetic markers identified despite significant family history of PE.