22 posts tagged with Fontan.

The Most Important Summer

by Heather Magee-Anderson on Friday, Jul 10, 2020

I am a fiction writer. I like to write stories about people, their challenges, their fears, and joys. I do not like writing about myself, because for so long, my life was fiction. I told many tales in order to escape from my reality. I didn’t want to be someone with congenital heart disease, so like my stories, I changed the narrative. I now embrace my truth and advocate for those like myself, but I still find it difficult to write about myself.

However, 40 years ago, my life was saved, and I feel the need to acknowledge that moment and express my gratitude.

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COVID-19: An Eye-Opener For Life With CHD

by Kelly DiMaggio on Wednesday, Jun 24, 2020

The coronavirus (COVID-19) has certainly turned everyone's world upside down, and my heart goes out to everyone who has been affected. To every single person working as essential personnel, thank you doesn't even begin to cover it – but thank you! While the last three months have been a huge adjustment for many, I can't help but think how quarantine has offered people a glimpse into what life with a complex CHD is actually like on a normal basis. It's strange to feel like – for once – the rest of the non-CHD world and I are on a level playing field.

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The Unknown Decade

by Kelly DiMaggio on Wednesday, Dec 19, 2018

November 23 marked my 30th birthday! Yes, 30 is definitely a milestone for everyone, but for me it was extra monumental. When I was born my parents were told I had hypoplastic left heart syndrome (HLHS)—a CHD incompatible with life—and that I would die within my first 24 hours. Miraculously, I defied the odds and 30 years later here I am. I couldn't be more grateful.

The months leading up to my birthday ended up being a roller coaster of emotions, some of which ended up taking me by surprise. Initially, I was ecstatic and beyond excited. Against all odds, I had made it! I wanted to scream it out from the rooftops.

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CHD: When You’re a Physician and a Patient

by Sweta Shah on Friday, Oct 26, 2018

Everyone always jokes with doctors, “What happens if you get sick?” Some of us laugh off the question. But, I am a family medicine physician dealing with congenital heart disease (CHD). I was born with right ventricular hypoplasia, which means my right ventricle is just a small flap unable to adequately pump blood. The diagnosis of CHD for me meant multiple surgeries in my infancy followed by a lifetime of “being careful.”

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Unite to Fight Congenital Heart Disease

by Kelly DiMaggio on Thursday, May 03, 2018

I had the privilege of attending the 2018 DCMARVA Congenital Heart Walk this past Saturday and it was by far the most meaningful walk I've participated in thus far. My husband Mike first got involved in the Congenital Heart Walk even before I did, four years ago. I was out of town the weekend of the walk and Mike, within 72 hours, realized he could get the day off of work and attend the walk for the both of us.

In that short time, he raised more than $3,000, manned the registration table as a volunteer, and walked alone in my honor.

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Coping with My CHD: Finding the Balance

by Emily Moore on Friday, Feb 23, 2018

This past weekend, my husband and I went on an amazing adventure. We traveled to Michigan’s Upper Peninsula (UP) to go dog sledding. As in, we get our own pack of dogs, hop on a sled and they pull us through the beautiful UP winter woods. It was one of the greatest experiences of my life.

One of the better things about our vacation was being off my phone and living in the moment and enjoying my company—Mike. Our lives are so busy down in the city with our 9-5 jobs, rush hour traffic, and the mindless adult tasks of never-ending laundry and doing the dishes, that sometimes I miss that time to just be. Just be with myself, and with Mike, in the moment.

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Always a Heart Warrior

by Kelly DiMaggio on Thursday, Jan 04, 2018

Almost six years ago I had my last cardiac catheterization—a procedure that lasted nine hours (yes, you read that right!) and almost resulted in my cardiology team at the University of Maryland having to flip the catheterization lab into a full blown OR for what would have been my fourth open heart surgery. Luckily, they were able to avoid that.

At the time, I had been dating my boyfriend (now husband) for just over two years. I was still so young and our relationship was long distance, as I was a few hours away at college. Like most young lovers, our relationship was tumultuous at times.

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Empathy for the Routine CHD Patient

by Kelly DiMaggio on Thursday, Jul 20, 2017

As the first generation of adults living with CHD, I'm sure that just about all of us have faced an ignorant or beyond frustrating experience when dealing with a seemingly routine illness for a heart-healthy individual (like a stomach flu or upper respiratory infection) that is inherently more dangerous or has more severe complications for a CHD patient. Many of those who aren't familiar with complex CHDs, or who have never glimpsed into the life of someone with chronic illness, often have trouble grasping how these seemingly "run of the mill" illnesses can be much more serious for a CHD patient—including educated and well-intentioned medical professionals.

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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.