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The opinions expressed by ACHA bloggers and those providing comments on the ACHA Blog are theirs alone, and do not reflect the opinions of the Adult Congenital Heart Association or any employee thereof. ACHA is not responsible for the accuracy of any of the information supplied by the ACHA bloggers.

The contents of this blog are presented for informational purposes only, and should not be substituted for professional advice. Always consult your physicians with your questions and concerns.

Jun 16

Posted by: ACHA
6/16/2011 10:06 AM  RssIcon

By Stephie Goldfish

For the first part of this blog post, click here.

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. Welton 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. 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 in my previous post 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. 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 top-notch 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.

Stephie Goldfish, aka Stephanie Hodgson, was born with a large ventricular septal defect, but it wasn't diagnosed until age 17. Since her defect went unrepaired, this resulted in Eisenmenger’s physiology, and she has developed severe secondary pulmonary hypertension. Stephie is an artist who graduated at the top of her class from The Art Institute of Pittsburgh; she is currently pursuing her love of writing, and writes short stories and poetry, as well as nonfiction. Learn more at her website and personal blog.

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