Updated: Jan 16
Today is Survivor Series Saturday at Aortic Hope!
We are back with another story for our Survivor Series! On certain Saturdays during the month, we will share stories from survivors or caregivers within the Aortic community.
Today we bring you the survivor story of Laura (Lala) Grau.
Dear Aortic Hope Community,
When you describe yourself, how do you tell your story? What are your defining moments? What do you dream of when you think of all your tomorrows?
I start with these questions because a large part of my aorta journey has been and will continue to be a negotiation between who I am—and what my aorta needs.
I’m getting ahead of myself, though. Hi! I’m Lala (nice to meet you)!
How do I describe myself? My mom would say that I’ve been in a darn hurry to run out into the world and live my life since before I was born (yes, I was a premie). I’m a 28-year-old lover of all adventures, a biostatistician, a rock climber/skier/mountaineer, a poet, a daughter/sister/friend. I dream of tomorrows finishing all the Colorado 14ers (21 down!), climbing Ama Dablam in Nepal, getting married on the top of any of the above, teaching my future kiddos how to ski. I have always felt like there’s not enough time—not enough time for all the things, for all the hugs I want to give, for all the love I want to feel—so I’ve been out here living in my dreams.
Now I have to put my aorta in the equation.
I was born with a Bicuspid Aortic Valve (BAV), so annual cardiologist visits have been a part of my life since I was born. In 2018, when my cardiologist mentioned off-hand that I had “mild dilation of the aorta,” I honestly thought it was just another thing about my BAV that I would eventually need surgery for—when that surgery would be—who knows? I didn’t truly grasp that this would become something serious or that would impact my life more than my BAV. It was not until October of 2021 that a new cardiologist made me realize that my aortic aneurysm was serious. Mostly, it was when she mentioned that any pregnancy with my aortic aneurysm would be very high risk.
Currently, I am not quite surgical (the fact that there is no consensus about surgical thresholds drives me crazy), but I am also not quite low risk. I’m dancing in the “Moderate” risk category, which many of you know as the “Watch and Wait (WW)” period of medical follow up.
As I said earlier, I have always been in a darn hurry to live my life, so this WW period is going to be the trial of my life. I have so many questions that no one has answers to. Will I one day be able to be a mom? How long will I have to wait for this surgery? What is the true risk of dissection or rupture if I live my life the way I want to? How does treatment differ for young adults (since the majority of people who have aortic disease tend to be older)?
I fluctuate between feeling extremely emotional and feeling totally numb. “La vida es un ratico,” my mom always says. Life is but a small moment. WW means feeling like you have a ticking time bomb in your chest—and feeling powerless in its disarmament. When you have a health condition that is directly at odds with the activities that make you who you are: How do you choose? If this were all up to me: I’d have this surgery in April after skiing my butt off this season, recover over the first few months of summer, and I’d be back to climbing mountains in the fall. I know that’s unrealistic. I know the surgery is dangerous. I know there’s a reason the surgical thresholds are there to begin with. But I would choose mountains, love, and adventure every single time—and to do so, I need this aneurysm gone.
If I know one thing that helps in this journey, it is knowing you’re not alone. So, dear reader, you are not alone. Whether you are newly diagnosed, pre-surgical, post-surgical, no matter where you are in your journey, you are not alone. We all have big hearts—and we’re here to support one another. Since my arms are not long enough to reach around the world to hug all of you, I hope my words can feel like an embrace.