84 posts tagged with Transposition of the Great Arteries.

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.

Read more

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.

Read more

We Must Use Our Voices

by Kim Edgren on Monday, Mar 09, 2015

I was so grateful to be able to attend this year’s Congenital Heart Legislative Conference. It is always a great experience to be around such inspiring individuals, and have the opportunity to meet with our legislators on the Hill.

With Congenital Heart Awareness Week earlier last month, we have heard a lot of the statistics surrounding CHD—but most striking is the lack of funding. How can the No. 1 birth defect—and leading cause of birth defect-related deaths—be so grossly underfunded? A better question is, what are we going to do about it? And that is what the day on the Hill is all about!

Read more

The Fearless Factor

by Ellen Greenberg on Tuesday, Dec 09, 2014

As I sat down to write about limitations I caught an episode of Fear Factor. I have never watched this show in its entirety; however, I found myself both engrossed and grossed out by it. This past year I began to realize all of my limitations and how to work within them.

I am always the girl with the can-do attitude. I often strive for things that seem impossible to many. For instance, I recently received a master’s degree. I auditioned for America’s Got Talent last year, because it was in Manhattan—close enough to where I live and I owed it to myself, for the sheer experience of the thrill, nothing more.

Read more

My Split ACHD Personality

by Jennifer Gooden on Monday, Nov 24, 2014

In September I was able to attend the ACHA 7th National Conference. I got lucky that my work wife and fellow Fontan, Tracey, was able to attend as well. There were three different “tracks” at the conference. One track was geared more towards patients, while the other two were more for professionals: nurses, doctors, surgeons, medical students… you get the idea. So what were two pediatric cardiac ICU nurses/single ventricle patients to do? We were struck with a very important question: patient or professional?

Read more

Living Past the Expiration Date

by Kim Edgren on Tuesday, Nov 18, 2014

As we approach another holiday season, it is hard to believe yet another year has passed—another year older as a CHD patient!

I recently read an article in Cardiology Today posted by ACHA, “Adults with congenital heart disease present challenges, rewards for cardiologists.” It is an excellent article and worth the read.

Read more

A Forum for Emotional Health, Not Just Physical

by Kim Edgren on Wednesday, Sep 17, 2014

It was a great pleasure to attend the 7th National ACHA Conference in Chicago earlier this month. This was my third and as in the past, it was a very fulfilling experience. From the welcome sessions to the gala, having the opportunity to be around 500+ patients, family and medical professionals in support of our CHD community was both rewarding and inspiring. Young and old, many in the company of fellow CHDers for the first time, others with lifelong friends made at past conferences, together sharing… and dancing!!

Read more

My Tips for Traveling

by Jennifer Gooden on Wednesday, Aug 27, 2014

Last month my husband and I went to Paris as a last hoorah before we would see how the rest of my cardiac year played out. The day we were flying out I was feeling particularly icky with nausea and being exhausted and I was glad to have a few travel “tricks” up my sleeve. So I decided to share a few of them I’ve found to be successful to hopefully ease your end-of-the-summer travels!

Read more

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.