175 posts tagged with Tetralogy of Fallot.

When You Meet Another with CHD, Part 2

by Jennifer Rogers on Wednesday, Feb 17, 2021

Hello! My name is Jennifer Rogers, and I have tetralogy of Fallot. I have been an ACHA blogger since 2018, and it has allowed me to meet many people like me, living with congenital heart disease. I believe highly in community and accountability, which is why I am so thankful to be part of this incredible organization. I really appreciate the opportunity to collaborate with Jared Gould, a fellow ACHA blogger, to discuss life with CHD and how our journeys have affected each other.

Jared was born with hypoplastic left heart syndrome. I read his series Pedaling the Pounds Off, and was inspired and motivated to stay active and be healthy. I reached out to him via Instagram in October 2020 to ask if we could talk one night. That conversation turned into friendship when we realized we shared the same feelings about our life experiences with CHD.

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When You Meet Another with CHD, Part 1

by Jared Gould on Sunday, Feb 07, 2021

Hi, my name is Jared Gould. Living with hypoplastic left heart syndrome, I enjoy opportunities to share information about my experiences with patients across the country. I started blogging for ACHA in July 2019 and since have met incredible people living with CHD. My blog series Pedaling the Pounds Off ended in early 2020, but I am now partnering with Jennifer Rogers, another ACHA blogger and friend, to write about issues facing CHD patients.

Jennifer was born with tetralogy of Fallot. We met virtually in October 2020 when out of nowhere I received a message from her on Instagram asking if we can connect. During our discussion, we discovered that we shared common views and experiences growing up with a heart condition. We even shared similar views on what it meant to be writing for ACHA and how we both questioned if we were the correct people to be sharing our stories.

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Finding Hope Within the COVID-19 Vaccination

by Christy Sillman on Thursday, Jan 07, 2021

I received the first dose of the Pfizer COVID-19 vaccination two days before Christmas 2020, and I underestimated the emotion I would feel while receiving it (I since received my second dose this past Tuesday). As an ACHD nurse practitioner, I’m not directly caring for COVID-19 patients, but I do walk into the hospital every day fully aware that there are many COVID-19 patients on or near the units I round on.

The level of vigilance with PPE shortages and helping my patients and myself stay safe has been exhausting. As an ACHD patient, I know what it is like to be critically ill on a ventilator. I have heightened anxiety about COVID-19, because I know what is at stake. This vaccination feels like a beacon of hope within the darkness that has clouded the past year.

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Defining CHD

by Christy Sillman on Wednesday, Oct 14, 2020

One of the most prominent debates in the congenital heart community is the definition of the acronym “CHD.” Let me preface this blog by stating that I recognize that your preference is deeply personal, and I don’t believe there is a right or wrong answer to this debate. Whatever side of the debate you fall upon, that is what is best for you, and I completely respect your choice.

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COVID-19 and the Impact on ACHD Patients

by Christy Sillman on Tuesday, Mar 24, 2020

I can’t be the only person who wakes up every morning and thinks to myself, “Maybe it was just a bad dream? This can’t be real life!”

The SARS-CoV-2/novel coronavirus/COVID-19 crisis has completely upended our way of life. It’s all anyone is talking about. Where I live, in California, our entire state of 39.56 million people are now on a “stay at home” directive in an attempt to decrease the sharp upward curve of severe cases that could overwhelm our healthcare systems. Schools are closed, all businesses besides essential services are closed, and our legendarily clogged freeways are now actually functional.

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The Ones Who Care For Us Part 2

by Robert Grabel on Thursday, Mar 05, 2020

Back in March 2016, after my valve replacement surgery, I wrote a post for ACHA called The Ones Who Care For Us. I discussed the importance of being grateful for our loved ones who support us as individuals with congenital heart disease. A recent experience served as a powerful reminder of how important it is to appreciate the people that mean the most to us…

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What Heart Month Means to Me

by Jennifer Rogers on Wednesday, Feb 05, 2020

It’s finally February, which means Heart Month is here! I don’t know about you, but this has to be one of my favorite months. It’s an exciting time of year, known for eating as much chocolate as possible and feeling mushy-gushy about our significant other. But, more importantly, it’s also a huge window of opportunity to educate ourselves and others how to keep our hearts healthy.

Let me ask you something: What does Heart Month mean to you? Really, please stop and think about it.

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Medical Trauma: Guilt vs. Thankfulness

by Jennifer Rogers on Thursday, Sep 19, 2019

If you’ve had open heart surgery, you’ve been through medical trauma. I was born with the congenital heart defect tetralogy of Fallot; I had my first surgery at 8 days old, and then my first open heart surgery when I was 8 months old. I was too young to remember, but it was the first time I experienced medical trauma.

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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.