By Emily Earhart
19 Jun

Getting Good at Transitions

Tuesday, June 19, 2018

It’s that time of year again where every weekend is filled with graduations and weddings. For many people, summer represents a season of transition—the transition from high school to college, adolescence to adulthood, student life to work life, single living to co-living. All these summer transitions bring changes to ourselves and in our relationships with others.

Those living with congenital heart disease know transition well. We often talk about transition as “THE transition”—moving from pediatric cardiac care to adult cardiac care. Until recently there were no universally accepted medical guidelines for this transition. I always thought I would see my pediatric cardiologist my whole life. It wasn’t until I was 30 years old, married, and thinking about family planning that I found out there was such a thing as adult congenital heart cardiologists.

And then it wasn’t until I became severely symptomatic—sleeping propped up by three pillows at night to minimize my coughing—that I decided I needed an adult congenital heart specialist. I transitioned to adult care just months before having open heart surgery. I then had another open heart surgery 16 months later, with several hospitalizations in between. It was a rough transition period. Everything in my life seemed to slow down right when I thought it was supposed to be taking off. But in the process, I learned more about myself and strengthened my relationships with those closest to me.

It’s been a year and a half since my last surgery and I’m just transitioning back to good health once again. Sounds like the perfect time for another transition! After briefly serving as an ACHA Heart to Heart Ambassador I recently joined the ACHA staff as the Greater Los Angeles Community Development Coordinator. I am SO excited about this new role! My goal is to expand ACHA’s regional presence in Southern California by creating patient resource groups and increasing awareness and resources for the local ACHD community. After learning how to become my own best advocate, I couldn’t be more enthusiastic about helping other fellow CHDers become their own.

We face many transitions regularly as CHDers: transitioning back to work after a surgery, transitioning into disability in ill health, transitioning on or off new medications, transitioning from low to high energy and back again. I’ve realized just recently that navigating all these transitions throughout my life has made me more adaptable, more resilient and more resourceful. As daunting and turbulent as these transitions may be, they have the potential to empower ourselves and make positive changes in our relationships with others.    


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