11/4/2011 10:24 AM
By Clare Almand
After reading several blog posts about growing up with “expiration dates,” it really got me thinking about how different my childhood was. I never thought I had an expiration date. No one told me to watch out for a certain year. My life since day nine has been problem, solution, problem, solution. Problem on day nine: cardiac arrest. Solution: coarctation repair. Problem two months later: ventricular and atrial septal defects. Solution: my first open heart surgery. And so on and so forth.
I wonder if everyone’s cardiologist follows the same formula. Whenever I try to get my doctor to tell me what potential challenges I might face in the future, she says the same thing. Nothing. She won’t even give me a hint. She likes to say, “There’s a lot we don’t know.” I get that, and yet, I know she knows something.
Information is a gift and a curse. When I received my mechanical heart valve, my surgeon told me it would last 200 years. So I felt pretty good about living a long, healthy life. When that surgery led to complete heart block, it was corrected with a pacemaker. Problem. Solution. Did I ask what could possibly happen afterwards? No, because the issue at hand was solved. And it led to an unprecedented nine years of being a healthy (all things considered), surgery-free teenager.
But it also led to a false sense of security. Imagine my shock during sophomore year of college when my pacemaker died unexpectedly, followed by atrial fibrillation a year later. I’m not sure whether having the knowledge that more rhythm problems were possible down the line would have been beneficial, but I didn’t appreciate being blindsided either. The worst part was, my doctors didn’t even know why. It’s just my crazy, unpredictable, Shone’s syndrome heart.
It was then that I realized that while my valve might last 200 years, that didn’t necessarily mean that my heart would.
Problem: ventricular tachycardia. Solution: implantable cardiac defibrillator. I understand and appreciate all that my cardiology team as done for me. Problem: congestive heart failure. Solution: Lasix. And maybe not knowing everything that could possibly go wrong will keep me from dwelling on things I can’t control. Problem: poor heart function. Solution: third lead for biventricular pacing. The truth is, I’ve gotten used to this system of taking things one step at a time. Problem. Solution.
Although, there is a small part of me that hopes I’ve got 185 more years left.
Clare Almand was born with Shone’s syndrome and has undergone a repair for coarctation of the aorta, multiple atrial septal defect and ventricular septal defect repairs, aortic valve replacement and an implantable cardioverter-defibrillator implantation. She has a B.A. in Media Arts and Design with a minor in Creative Writing from James Madison University. Clare pushes paper during the day and writes screenplays in her spare time.
1 comment(s) so far...
By Michelle on
11/5/2011 3:19 PM
Re: Problem. Solution.
LOL...although nobody ever told me about an *expiration date* I did feel like I SHOULD have been told I had one when I had my Fontan at age 27 and all of the doctors at the Mayo Clinice tell telling me how lucky I was to " have made it this far ". I was like " huh!? " This was my third open heart surgery.
At age 51 and living with one ventricle and transposition of the great vessels I do sometimes ponder about how long God will keep me here on this earth. But I have never made it the focal point of my life. That is why they call it LIVING!