Just Emily

Sixteen years ago today I had open heart surgery to replace my congenitally defective aortic valve, the main defect in a group of left-sided heart defects I was born with and have been under continual care for since I was an infant.  The technically difficult operation called the Ross Procedure was performed by Dr. Vaughn Starnes, widely considered the best valve (and heart) surgeon in the country, at Children's Hospital, Los Angeles.  I was discharged from the hospital after three days and began my sophomore year of high school a mere three weeks post-op.  Prior to July 29, 1999 I had undergone a total of seven invasive heart procedures. From July 29, 1999 up until this month, I have had zero.

That date and that surgery proved to be a demarcation in my life in more ways than I could realize until just recently.  Because of the severity of my disease as a child my sense of self came to be deeply connected with being a heart patient.  After the success of the Ross procedure in 1999 I discovered an entirely new energetic self ready to thrive.  It is only in hindsight that I realize just how much my new heart valves allowed me to do.  I graduated from UC Berkeley with a double major; I went to a prestigious culinary school and worked at the Ritz Carlton; I helped my family open a restaurant from the ground up in the middle of the recession; I moved abroad and lived in London for three years while achieving my Masters degree.  I worked at several historic food institutions, markets, campaigns and retail spaces while in London.  I soaked up most of western Europe with my best friend and partner at my side.  Through all this I shed my consciousness of being a heart patient with physical limitations.   Now I was just Emily.

That reality has just started to change  in the last six months as I have become symptomatic again (Ross procedures usually last for about 15 to 20 years).  I have become very breathless and short of stamina and energy.   I have bad coughing fits and sleep with pillows propping me up to help me breathe better.  These symptoms have come on slowly, so slowly that it makes one doubt that you are really experiencing them and not just getting old!   After a few lifestyle changes (reduced work hours) and a string of tests and exams, my  doctors deduced that my aortic and pulmonary valves are now leaking severely and it is time for another operation.  Enter Dr. Starnes, again!   This time at USC and this time in the month of August.

I've decided to resume blogging after a long respite on this special day to share the details of this next journey.  The open heart surgery will replace two valves with man-made tissue valves.  It will be on Tuesday August 25th at 8.30am California time!  Again, performed by the best of the best! I am going to blog about my experiences over the next few months. Why?  Because there are loving people who care to hear about it, because adults with congenital heart defects are an increasing demographic in an emerging field of medicine (adult congenital cardiology) and because it is going to be a very different experience this time for me: not being an adolescent or child, doing this together with a spouse, and honestly having a little bit more consciousness and a different sense of perception.  This time around I feel like I'm being reminded that I'm still a heart patient rather than being shown that I'm not just a heart patient.  But I am also just Emily.

I am a bit nervous because I'm a bit rusty at being a patient, though I did get some good practice in earlier this month during my diagnostic catheterization.  And the cath was a good test run that proved that both Ryan and I are up for the challenge.  I'm excited to see how this surgery experience is different from the last and whether or not my recovery will be as quick.  There are lots of unknowns from a personal experiential perspective but the most important variable is a known quantity and that is Dr. Starnes and the USC team.  I have no doubt that I will soon be thriving again!