My father, my brother, and I each had aortic root and valve replacements at 26 years old. Anyone who’s had open heart surgery understands the challenge of it, but after my operation, one of my lungs also collapsed, and my body rejected the internal sutures along my incision. All of this resulted in three surgeries, about a month in hospitals, and a year of rehab.
Physical pain isn’t something you really remember. What I recall noticing after my surgery was hearing a faint ticking sound. I honestly thought I had a super-human ability to hear the clock on the wall because I was still heavily medicated. But that tick-tock was a mechanical heart valve, something I prayed wouldn’t need to be done.
I’d now need to be on blood thinners for the rest of my life. That heart valve tick is a reminder of what saved my life but also took away my ability to have children. When you’re 26, when you’re a woman, that’s an incredibly profound loss. I’ve always loved kids.
I’ve seen a lot of the “worst-case scenarios” around this condition. My father went on to have a major stroke, and my brother suffered a major aortic dissection, followed by more serious surgeries. His survival is a true miracle…but miracles do run in the family. And although they’re my blood, I never quite believed that I’d be in the same boat. Being the only woman in my family with Marfan, my post-surgery complications with bearing children is a weight that’s difficult to pull.
When you’re 26…27…28, open heart surgery is not a very relatable subject. The scar on my chest is a good conversation starter, but in a lot of ways, very isolating. I’ve always craved a community that understands these rare challenges. A lot of people fear dying. Luckily for me, I’ve already been there and done that. Very few things intimidate me anymore.
What I have gained from my genetic disorder is an immense drive for life. I’ve switched my career from elementary education to medicine, working towards the simple goal of saving another- whether that’s from physical harm or the mental stress that trails behind these big operations. My family, friends, and doctors saved my life and willingness to be alive. I hope to someday return the favor.
The Marfan Foundation is a nonprofit organization that saves lives and improves the quality of life of individuals with genetic aortic and vascular conditions including Marfan, Loeys-Dietz, and Vascular Ehlers-Danlos syndromes. Our vision is a world in which everyone with genetic aortic and vascular conditions can live their best life.