20 posts tagged with Fontan.

Walking to Fight Congenital Heart Disease

by Kelly DiMaggio on Thursday, Sep 01, 2016

This past April, I was fortunate enough to participate in my first Congenital Heart Walk. When reflecting back on my first walk experience, one of the things that strikes me the most is how these walks are really growing and really coming into their own. The congenital heart disease (CHD) community, and even more so the adult congenital heart disease (ACHD) community, is a rather unique group. CHD’s are the most common birth defect, with one in 100 children being born with some form of CHD; yet they are still grossly underfunded and under advocated for. I think it’s so wonderful that the Adult Congenital Heart Association (ACHA) and The Children’s Heart Foundation partner up to put on such a great event! 

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Finding What Makes You Feel Limitless

by Kelly DiMaggio on Wednesday, Jun 22, 2016

I think we all have that person, place, thing or activity that makes us feel limitless when it comes to our hearts. Let's face it, as adults with congenital heart defects, there are definitely a lot of obstacles and limitations that we face in our day to day lives. Yet it's amazing how those obstacles and limitations take the back burner when we discover the place, thing, or activity that makes us feel unstoppable.

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To My Village: Thank You

by Kelly DiMaggio on Tuesday, Mar 29, 2016

I’m sure we have all heard the saying, “It takes a village to raise a child,” but I feel this rings particularly true for those of us with congenital heart disease and our respective family and friends.

My open heart surgeries were performed when I was three months old, two years old, and four years old. From the get-go, a strong community of loved ones surrounded me. My parent’s friends and my grandparent’s friends became regular visitors at the hospital and were by me just as much as my immediate family.

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An End-of-Year Reflection on Love

by Kelly DiMaggio on Thursday, Dec 17, 2015

As the year comes to a close, many people find themselves reflecting on the past 12 months. I am no exception. 2015 was a rollercoaster of a year for me. In May, I lost my stepfather, Dave, a long and grueling battle with cancer. Dave was my right-hand man health-wise. He GOT every feeling I’ve ever had regarding living life with chronic illness. For those of us who fall into the medically-related sector of anxiety and depression, you know how strong the bond is between those with shared medical experiences. Losing that bond was devastating.

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The Beauty of Scars

by Kelly DiMaggio on Friday, Sep 18, 2015

I loved writing this post, as it encompasses so much: love, friendship, and the beauty surrounding the "imperfect" body of those scarred CHD warriors. I often struggle to put my thoughts into words, as words don’t do justice to the vast spectrum of all that comes with being an ACHD patient. With that in mind I decided to focus my latest piece around a styled bridal shoot that I was lucky enough to model for. After all, a picture's worth a thousand words… right?!

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What Heart Defect?

by Kelly DiMaggio on Tuesday, Jul 07, 2015

Last month I had the pleasure of tuning in to a webinar entitled “When is Transplant an Option in the ACHD Patient?” presented by ACHA. I must admit, the presentation certainly stirred up a lot of emotions in me, many of which I’m still working through.

Writing has always been my solace, but it’s been hard to capture the rollercoaster of emotions and experiences in words. Yet these are the narratives that must be told. CHD patients are living well into decades that many physicians never thought they would see, and it is up to us to keep paving the path forward.

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Piecing Together My Identity

by Kelly DiMaggio on Thursday, Apr 02, 2015

Since New Years, I’ve been into clean eating and at-home yoga. One of the mantras that tends to come up a lot in the yoga videos that I do is “head over heart, heart over pelvis.” Now clearly the pelvis part isn’t applicable here, but the “head over heart” sweet whisper has really resonated with me lately. Why? I can’t exactly pinpoint it—but it’s definitely been a good thing.

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"The Shoes Stay On"

by Brenna on Thursday, Jan 29, 2015

On the Friday before Labor Day, many years ago, I was excited to meet a friend for a girls’ night out in Los Angeles with dinner, drinks, dancing—the whole enchilada of fun (maybe even some awesome enchiladas). Instead, I was directed by my doctor to go to the closest ER to get an EKG.

I had been feeling a little slow, lethargic, even light-headed. My mother and I met at the ER after work. The doctors told me to change into a hospital gown in order to run a few more tests. I was in a nice brown dress and my favorite new shoes, green and brown silk open-toed with a 4-inch wooden wedge—totally worth the price. I told them, "OK, but the shoes stay on."

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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.