By Stephanie Hodgson
14 Jun

Moving Mountains and Hearts

Tuesday, June 14, 2011

When I first was diagnosed with a large ventricular septal defect (VSD) with Eisenmenger’s physiology at age 17 in 1983, I finally understood why I was always so blue. And, after the numbness wore off from knowing that surgery was not an option for my heart defect, unless I were to have a complete heart and lung transplant, I set my heart on graduating high school with high honors, going on to Art School in Pittsburgh, PA, and graduating at the top of my class in December 1985.

Being an artist has helped me work out my creative energy, but it also has enabled me to work out some of my fears about living with a serious heart and lung problem. In one of my last quarters of Art School, the professor gave us an assignment to create a painting about a subject either close to our hearts or universal in scope. So, I painted the painting to the left of what I imagined my heart to look like from the inside. I remember showing ideas to my professor and I told her that I wanted others to know that with God's help I would be OK, thus, the spiritual light coming in from the "blue side."

It was during this time in Art School that I began to wonder if I was the only adult out there living with congenital heart disease (CHD). I often wondered if I’d ever meet anyone as blue as myself.

I moved from Pittsburgh to New York City for my first job as a computer graphic artist, and basically lived and worked there for twenty years.

It wouldn’t be until many years later, with the Internet and all, that I’d come upon a group of adults living with congenital heart disease that share congenital heart stories. As I said, I had never met anyone as blue as myself, and then I met her — Karen Klein McNulty, the first President and Co-Founder of the Adult Congenital Heart Association. I met Karen at a luncheon with several other ACHA members around 1999-2000. I was amazed at the devotion with which Karen showed in helping others like myself meet others who share congenital heart disease. She was there with her mother, Mary Kay Klein, who is just as devoted to the ACHD community. Karen had an unrepaired defect and a similar heart physiology that I have — Eisenmenger’s — that causes cyanosis and shortness of breath. Suddenly, though, Karen’s life was cut short on August 31, 2005, at only age 30.

When I first met some from the ACHA community, in 2000, I felt like I had come full circle, yet the circle was ever expanding. In particular, I met Amy Verstappen, who is the current President of ACHA, through a few informal luncheon meetings in New York City, and she had such a vision for the ACHA community. ACHA’s success is because of the dedication that Karen and Amy have spent bringing together the community of ACHD patients and top adult congenital heart specialists in the world.

To be continued later this week…


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