114 posts tagged with Ventricular Septal Defect.

Why Show Up?

by Darcie Farella on Thursday, Mar 21, 2019

This year marked my third consecutive year going to Washington D.C. for the Congenital Heart Legislative Conference. To be honest, I almost didn't attend. The Congenital Heart Futures Reauthorization Act was just signed into law a few months earlier and I was debating if I really should go advocate.

I recently moved, still had stuff in boxes, and had more than enough going on at work. Frankly, I just wanted to use the couple of days I had scheduled out of the office to sleep in, hangout with my cat and unpack some of my belongings. The one thing that kept me from cancelling was that I had a newly elected Representative for my district and I knew it was important to start early with making a connection, so I showed up!

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CHD and Finding “The One”

by Lauren Bednarz on Thursday, Nov 29, 2018

My husband, Chris, and I have been together 10 years and married almost seven. Some days I still can’t believe I found my soulmate and very best friend. I’m so grateful and blessed to have him in my life.

When I was born 31 years ago I was supposedly a healthy baby girl, but at 10 weeks old and in heart failure, I was diagnosed with complex congenital heart defects: tricuspid atresia, hypoplastic right ventricle, and ventricular septal defect. Medical technology to help save us complex CHDers was still so “new,” and my parents were living moment to moment never dreaming that 31 years later I would be happily married and living a wonderful full life despite all the challenges I have faced.

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A Lesson on CHD and Acceptance

by Marissa Mendoza on Tuesday, Jun 12, 2018

I had been studying for my last college exam when a friend from the Adult Congenital Heart Association asked if I would become involved with a “Congenital Heart Disease (CHD) Assembly” in Northern New Jersey. The assembly was for third to fifth graders, and their school was doing a week-long CHD awareness/fundraising event prior to the assembly. Just over 22 years ago, I was born with six complex congenital heart defects, and I underwent three open heart surgeries before I was two. I was within weeks of finishing my nursing degree when I was asked about the assembly, so I was eager to get involved with an event so close to my heart not only personally, but also professionally.

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My Name Is Clare Almand and I Have CHD (Part 2 of 2)

by Clare Almand on Thursday, Mar 22, 2018

Note: To read Part 1 of Clare’s post, click here.

When I last left you, I was talking about being more open about my heart condition and sharing it on a larger scale—“fulfilling my purpose,” if you will. So here’s what I’m doing: I’ve collaborated with a dozen amazing women—writers, actors, and directors—and the first weekend in May we’re putting on a women’s perspective show in Los Angeles. We’re all writing and performing pieces about our lives: where we come from, the issues that are important to us, and the events that have shaped us

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My Name is Clare and I Have CHD (Part 1 of 2)

by Clare Almand on Tuesday, Feb 13, 2018

I don’t consider myself a “sick” person.

If I count the number of years that I’ve had heart surgeries and procedures, I can say that I’ve spent most my life “healthy”—as in “not being hospitalized.” Only 11 of my 31 years have I had heart issues that needed treatment, either medicinal or surgical. This ratio of “healthy” years to “sick” ones is an important part of my identity. And because I don’t consider myself sick, I don’t tell people regularly about my chronic illness.

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Defining True Support

by Kim Edgren on Tuesday, Nov 21, 2017

It is that time of year that we reflect on what we are thankful for. This year, as I enjoy the calm of heart stability, it is easy to take that for granted. It is during this calm, however, that I should be the most thankful for that stability.

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Can We Just State the Obvious? CHD Stinks.

by Clare Almand on Wednesday, Sep 27, 2017

It’s funny that four years ago, I stopped writing posts for the ACHA Blog because I’d run out of topics. My health was stable and I had no new angle or insight on my CHD experiences that I hadn’t covered or had been covered by someone else. And there were no new problems to report. It’s funny because, guys, that is sooooo over! My heart is back to being a huge jerk.

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Thoughts on the Eve of My Eleventh Heart Surgery

by Clare Almand on Tuesday, Apr 04, 2017

Tomorrow, I’m having my eleventh heart surgery.* Whenever I’m about to have surgery, I go through the same emotions. Most of my feelings go back to how absurd it is that this is a normal thing in my life. The following is a mostly concise description of what I’ve been thinking about.

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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.