Lucky, Lucky Girl

Eight and a half years ago I had my heart stopped, my lungs rhythmically inflated and deflated by a machine, my back cut open 6 inches, and my ribs separated. A nice chunk of my aorta was removed and replaced by Gortex™. All this to cure a congenital birth defect called a coarctation of the aorta. I was twenty four. My little Frankie was 6 months old.

It was scary for everyone but me (and Frankie since he doesn’t remember it). I seem to have floated through that year and a half ordeal of diagnosis and correction in an oblivious fog. After a quick recovery, I started graduate school and went on with my life – and nary gave my condition a thought, except for the occasional recounting of the events to various medical professionals who found it fascinating. “Diagnosed so late in life, and while pregnant? How rare.” “And you made it through the birth ok? Hmm.”

I haven’t bothered to check in with my cardiologist for my annual check-up in four or five years. I barely thought about it. Sure, every year Mom and I go on the Heart & Stroke Mother-Daughter Walk. But that was it. Once a year I thought about how lucky I was to be alive, and then I went back to eating poorly and rarely exercising.

Until this year. After soliciting donations from my co-workers, I thought I’d check online (out of morbid curiosity) for some stats on coarctation patients. Here’s what would likely have happened to me if I hadn’t had my coarctation properly diagnosed and treated:

“The mean survival rate of patients with untreated aortic coarctation was 35 years, with 75% mortality by 46 years of age. Most developed systemic hypertension, usually during childhood, and ultimately, by the fifth decade, left ventricular failure.”

I’m 33. That means that I had a good chance of being dead in two years, possibly 13 if I were lucky. And I am lucky. I’m lucky that my doctor (whom I’d just switched to because I was pregnant) noticed my heart murmur and actually did some tests on it. Doctors had told me I’d had a murmur my whole life and no one, not one doctor had ever checked it out. And I was too young and stupid to know that it should have been checked. I was lucky that more tests revealed that I didn’t have a pulse in my ankles. Plus I had high blood pressure and hypertension during my pregnancy. I was luck that my cardiologist, GP, and OB were excellent, excellent, excellent. While they wanted me to abort the pregnancy, they were VERY supportive when I didn’t. There were 14 medical professionals in the delivery room with me and I was lucky that little Frankie has turned out fine.

I was basically given a second chance and I just about pissed it away. But with my Heart & Stroke guidebook in hand, I’m turning a new leaf. I’ve booked an appointment with my cardiologist. I’ve started taking a ½ hour to hour brisk walk every day (4 days and counting so far), I’m eating heart-friendly foods, and I’m going to get to my ideal BMI slow and steady – 1 pound per week. And, I’m realizing that it’s about being healthy (and alive), not about being thin. I’ve tried becoming more fit and failed in the past, but I never thought of it as life or death before. That changes everything.