Wednesday, June 1, 2011

Moving Mountains and Hearts

written by Stephie Goldfish

When I first was diagnosed with a large Ventricular Septal Defect (VSD) with Eisenmengers 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 and 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 also it 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 below 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".

"Stephanie's Heart", Oil Painting, 1985, by
Stephanie Hodgson aka Stephie Goldfish

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 ACHA (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 — Eisenmengers — 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.

The first ACHA Conference I attended was in the summer of 2005 in the New York / New Jersey area. I remember that day so well. I had been going through a separation from my now ex-husband. I was feeling sort of emotionally raw, having been out of touch with everyone at ACHA, and I was feeling isolated and sad. However, at the conference, I met some of the best doctors for my specific heart physiology and defect.

Dr. Gersony and his daughter, Dr. Deborah Gersony, were at this conference. I introduced myself to Dr. Deborah Gersony, and she mentioned I could see Dr. Erika Berman Rosenzweig, whom I had heard that morning with Dr. Michael Landzberg in a breakout session on Eisenmengers. Both Dr. Deborah Gersony and Dr. Erika Berman Rosenzweig are affiliated with Columbia Presbyterian Medical Center in New York City, and they had just opened one of the first ACHD clinics, so this seemed like a good choice.

One-on-ones with renowned ACHD doctors are a highlight of most conferences, which I had with Dr. Michael Landzberg, the Director of the Boston Adult Congenital Heart (BACH) and Pulmonary Hypertension Service. He also suggested that it would be to my benefit if I saw the doctors at Columbia's Adult Congenital Heart Clinic. He mentioned, though, that the team I was with at Mount Sinai Medical Center is a smart group of doctors, specifically Dr. Martin E. Goldman, who has been my favorite cardiologist since 1988. And the painting above is actually hanging up in the Cardiology Board Meeting room at Mount Sinai Medical Center.

I did go for a consultation at Columbia Presbyterian Medical Center in the spring of 2006, and since I hadn’t had a Cardiac Catheterization since 1983, Dr. Erika Berman Rosenzweig performed another one to get a new baseline of my heart pressures. She suggested some new medicine therapy, but as I had planned to move to North Carolina, she said perhaps that the team at Duke could start me on one or two of these new medicines.

Having come from a long history of seeing so many ACHD specialists and all the fellows in training, I appreciate that I have a team like the ACHA staff and volunteers spearheading the care we as a community receive, and ACHA has been expanding in great ways.

I participated in the ACHA Lobby Day in February 2006, held in Washington D.C., and I was so impressed with the organization, the care, and work it involved. They even supplied a shuttle bus for us so we wouldn’t be in the cold weather or have to walk long distances. We moved hearts that day in Washington D.C., and eventually got new laws passed for our benefit.

ACHA has been helpful in establishing a platform for the ACHD community to come together from all over the country and world to meet topnotch professionals and others like me that share similar stories about their hearts.

ACHA has given me a new perspective to look beyond age 18, 30, or 50, but also to have a quality of life that we may not have had without their advocating for us, as many of us with CHD live well into adulthood.

Still, I am sadly reminded that I am the exception; one who has out lived the doctors’ expectations.

I am grateful to ACHA and Amy, and humbly thankful to Karen who was more than just her heart defect:  Karen paved the way for us. Her work and legacy at ACHA lives on today. Yes, Karen, Amy, and ACHA have moved mountains and hearts.