Within 10 weeks, I was diagnosed with an aortic root aneurysm, gene mutation, & had an open heart surgery.
Straight down my chest is a 5 inch scar that goes through my skin, my sternum, and everything I knew before. I lay on the operating table at The Texas Heart Institute, 1,500 miles away from my home and family in Utah. My heart stopped for 162 minutes. I agreed to let them keep my removed aorta for testing because less than 1,000 people in the United States have my gene mutation. This gene mutation caused me to have an open heart surgery at 29 years old.
“We are scratching our heads trying to figure you out.” “We usually don’t see this.” “I’m sorry.” “Here is my cell phone number for contacting me directly for any problems.” These are examples of what multiple doctors have said to me. Honestly, anxiety made me feel like I wouldn’t make it to my 30th birthday. The average size for the aortic root is 3 centimeters; mine measured 5.2 centimeters a few weeks before the surgery. Aortic aneurysms are known as a silent killer, more common in people 60 years and older and in men. So why did a 29 year old female receive this diagnosis?
While watching my son’s soccer practice, my cardiologist called me. “Jazzy, you tested positive for the ACTA2 gene mutation,” he said. I had no idea what he was talking about. “This gene mutation makes your aorta and blood vessel walls weaker. We need to plan your surgery sooner,” he explained softly. I asked, “Are we thinking in 1-3 years?” He paused and responded, “No, yesterday.” I went silent as he continued, “Your gene mutation puts you at a higher risk of dissection.” The panic in my body was overwhelming. I sat in the car, frozen. As I watched kids kick the soccer ball, I felt like the soccer ball. I was kicked around the field of my life from one goal to the next. Then, once I finally celebrated reaching my goal, I was taken back to the middle of the field to be kicked around again.
I worried about how I would execute all of this. I needed to travel to another state, leave my kids, and trust a medical team I didn’t know. Thankfully, my mother-in-law took control of the financial worry. She gathered family, friends, and even strangers who helped with a GoFundMe, flyers, fundraisers, and sharing my story. I began to pressure myself to stay strong for everyone supporting me. I didn’t want anyone to worry about me, so in return, I wasn’t worried about me. I was afraid to show weakness because I didn’t want the support to go to waste, a story I made up in my head. We created the hashtag #RedForJazzy to help spread the word, and everyone wore red on the day of my surgery. To this day, everyone still remembers the energy in the air on November 3, 2023.
I woke up with tubes down my throat and tied to the hospital bed. I used my hands to communicate with them to take it out; they told me no. I didn’t stop my hand motions until they agreed. I reassured them I could breathe on my own. If there is one thing I undoubtedly believe in, it’s my ability to be strong. I sat up the night of my surgery, laughing with the nurses, writing a poem, and feeling happy that the surgery was over. Every day after was brutal. I remember telling myself almost every hour that this was the worst moment so far, and I was closer to being home every hour that passed. My strength continued until I was discharged from the hospital. I resumed my recovery in a hotel room until I was cleared to fly back home.
Have you ever had a thought that won’t go away? Then you end up obsessing or becoming frustrated that you are still thinking about it. I believe life does that to us. Things will keep coming up until you’ve learned, acknowledged, or have made a shift. I am living in medical deja vu as I write this story. A week ago, I was told I have a sternal nonunion, a rare complication with the sternum not healing properly after open heart surgery. I have a correction surgery on November 4, 2024. The day before this surgery, I will be celebrating my one year Heartiversary, as we survivors call it. This surgery will recut my same incision to remove my current wires and replace them with a sternal plate.
This is my second chance to be present with my emotions. No pressure to be strong. Ironically, I kept thinking about the word weak. As I wondered why it was constantly coming to mind, I realized how much negative energy I held toward this one word. The definition of weak is lacking physical strength and energy. I realized that’s exactly how I felt at this moment: weak. This is my opportunity to recharge, recenter, and preserve my energy. Last year, I stepped into living life in slow motion after open heart surgery. Life gets chaotic, and sometimes, we are too busy to stop and smell the flowers or breathe. When I take the time to be weak and slow down, I can connect with myself and my needs. I invite you to live in slow motion and experience weakness the way you need. Experiences teach us lessons if we are willing to see them and listen. I give you permission to use my story as an example to check in with yourself, think, and write down what keeps you from slowing down or being weak. What helps you be present in the moment? Who are the people in your life that you can be weak around? Change begins with awareness.
Once you have it, congratulations. Believe in yourself and be weak enough to embrace it fully.
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