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Posts by Kelly DiMaggio

We have had dozens of bloggers since this blog began who have been so open with their stories. If you are interested in blogging, too, we'd love to hear from you. Please email info@achaheart.org.

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“But you don’t look sick...”

by Kelly DiMaggio on Thursday, Jul 30, 2020

COVID-19 has brought those with chronic and invisible illness to the forefront. Or has it?

As the pandemic drags on, numbers rise, and political views heat up, the main risk group is still predominantly presented as the elderly. Yet there is a whole subset of people with chronic and invisible illness. Those with asthma, heart problems, auto-immune diseases, cancer survivors… the list goes on and on. But we aren't seen as sick; rather, we are seen as young and thus “safe.”

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.

The Very First Walk for 1 in 100

by Kelly DiMaggio on Monday, Apr 29, 2019

The inaugural Walk for 1 in 100 series kicked off this past Saturday at Wheaton Park in Maryland, and was nothing short of a rousing success! As I sit down to write this, I'm still struggling with exactly what I want to say. There are no adequate words to describe not only the walk itself, but everything leading up to it—there was so much pure emotion associated with it all. However, if I had to pick three words to sum it all up, it would be love, support and passion. An abundance of love, support and passion!

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.

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.

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.

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.

Let's Talk About Love...

by Kelly DiMaggio on Wednesday, Feb 15, 2017

Being in love and in a relationship is one of the greatest gifts that life has to offer, especially for a congenital heart disease (CHD) patient.

A Decade Gone By: Then and Now With CHD

by Kelly DiMaggio on Thursday, Jan 12, 2017

When presented with the question "How different were you and your CHD 10 years ago compared to today?" my initial reaction was to laugh out loud. I know that probably seems like somewhat of a strange reaction – after all, there isn't really anything funny about congenital heart disease (CHD).

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!

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.

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.

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.

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?!

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.

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.

Disclaimer

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.

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