Maya Brown-Zimmerman - Trusting Your Intuition
All I wanted for my 18th birthday was an ablation to repair my Supraventricular Tachycardia (SVT). My tachycardia was getting more frequent and it was impacting my ability to participate on the swim team. My parents were reluctant for me to have a procedure on my heart, but they agreed. The day before my birthday, I had the procedure which was successful, and I was elated.
Less than 24 hours later, however, my recovery went south. I felt a searing pain my thigh, which knocked me down. Over the course of the next week I developed parathesia (prickly, burning pain), swelling and decreased mobility. Multiple doctors brushed aside my pain until it became unbearable.
One week post-op, I finally had an ultrasound of my leg, revealing multiple pseudoaneurysms and a great deal of internal bleeding. The surgeon taking me in for an emergency procedure cautioned that I was close to losing my leg.
I ended up requiring a second surgery a month later in order to fully repair my femoral artery, and there was a long recovery with some permanent nerve damage to my leg.
Prior to my ablation, my parents peppered the doctor with questions about his experience with Marfan syndrome, the connective tissue disorder I have. The doctor’s response was that they clearly didn’t trust him, and that he’d call off the procedure if they didn’t stop asking questions. This is a red flag. Your doctors should be willing to take the time to answer questions, and you can help be efficient by writing down your questions ahead of time whenever possible.
While my parents and I recognized something was wrong post-ablation, none of us pushed my doctors for imaging. “Mothers’ intuition” is real, and when you know in your gut something is wrong, it’s ok to work hard to seek answers. If my mom or I had asked for imaging, or been insistent that what I was feeling wasn’t normal, I likely would have had repairs earlier and may not have the nerve damage that I do.
Thirteen years later, I’m doing well. My SVT has not returned. I’ve had two pregnancies (and adopted two other children). I keep active. But from this experience I learned a lot about how parents and patients should advocate.
If you want to join Maya in leaving a lasting legacy, join My Research Legacy, an American Heart Association secure people-driven online network where users can share their genetic, lifestyle and environmental data and participate in research.
