82 posts tagged with Transposition of the Great Arteries.

Caring for an Adult in a Pediatric Cardiac Intensive Care Unit

by Jennifer Gooden on Tuesday, Nov 03, 2015

Last year I went to the Adult Congenital Heart Association Conference in Chicago with my zipper sister, Tracey. We both have tricuspid atresia, have had the Fontan procedure, and live in the same area. If that wasn’t enough of a bond, we also work together at a nationally-ranked pediatric hospital in the Cardiac Intensive Care Unit (CICU).

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My Very First Congenital Heart Walk

by Ellen Greenberg on Wednesday, Oct 28, 2015

This month I had the pleasure of participating in my first Congenital Heart Walk benefiting the Adult Congenital Heart Association and The Children’s Heart Foundation. To say that I was motivated and excited would be an understatement, because my goal is always to raise awareness.

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Looking for the Little Signs

by Kim Edgren on Monday, Aug 31, 2015

I have blogged in the past about waiting for the other shoe to drop from a cardiac standpoint. It is inevitable that there will be another intervention in my future. Of course the hope is that it is of the less invasive kind and not open heart surgery, but there are no guarantees.

I am always looking for some little sign that my heart status is changing and because of the subtle changes that led up to my heart failure the last time, I wish I knew what little memos my body may be trying to send me. And, I am hoping I didn’t get one last March.

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The Power of Knowledge

by Ellen Greenberg on Monday, Jul 20, 2015

I think that as CHD patients we may have more medical knowledge than the average person. It is said that knowledge is power. But as CHD patients, is this power helpful or hurtful? The more we know, the scarier our own personal situations can be. This knowledge can also be a helpful tool. I like to feel the positive—that it is power.

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When Your Doctor Retires

by Jennifer Gooden on Thursday, Jun 04, 2015

I only have one more appointment with my ACHD cardiologist until she retires in July. My current cardiologist, we’ll call her Dr. L, is only my second cardiologist—ever. And my first ACHD cardiologist. I have been seeing her since I was about 19 years old. She is not only an amazing doctor—how many docs give you their cell phone number?—but she is a pretty cool person, too.

But while I am one of her biggest fans now, we have not always seen eye to eye.

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The Best Village Ever

by Kim Edgren on Thursday, May 28, 2015

Gratitude: “the the quality of being thankful; readiness to show appreciation for and to return kindness.”

These past couple months I have felt a lot of gratitude for all the support our team received in raising money for the Boston Congenital Heart Walk and for the help I receive from my family and friends in planning for, working towards and showing up on walk day. It takes a village and I have the best village ever.

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An Open Letter to My Pediatric Cardiac Team

by Ellen Greenberg on Tuesday, Mar 24, 2015

Dear Pediatric Cardiac Team,

I’d like to tell you that April will mark a huge milestone in the course of my life, as it will be 30 years since that tiny first grader—me!—Ellen Jenny Greenberg, had her first of many surgeries. Yes, you read correctly—30 years since my classic Fontan procedure. I still remember explaining my surgery to my class, and one boy saying, “So you’ll be dead during it,” and my quick response was “No, the machine will be breathing and beating my heart for me.”

It would be a treat to somehow see all of you and give you a great big hug and kiss for providing me with this precious gift of life.

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My Virtual Health

by Jennifer Gooden on Friday, Mar 20, 2015

In December, my phone died. It super died. It got stuck on a loading screen doing an update and it was over. I couldn’t get any pictures or contacts off my phone. And at first I thought, “Awesome, now I will get a new great phone.” And then reality set in.

I went to the phone store, bought a new phone, and went home to plug in a bunch of phone numbers. I got my husband, my mom and my sister… and then several four-letter words came out. I realized that now I don’t have a phone number to contact my cardiologist or adult congenital heart team if I need to.

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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.