82 posts tagged with Transposition of the Great Arteries.

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!

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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.

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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?

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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.

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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!!

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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!

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“Healthy Enough”

by Kim Edgren on Tuesday, Jul 29, 2014

Back in grade school, pre-Rastelli procedure, I had a gym teacher say to me as I stood on the sidelines, “You look healthy enough to play!” The purple lips and purple fingernails along with my health record should've told her otherwise but yet, to her, I looked healthy enough to participate in her class.

The comment has stuck with me, and to this day I still struggle with looking like I should be able to be athletic and push myself more. And even in full congestive heart failure, I struggled with accepting the “I can’t” and still went with the “I’ll try.”

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Not My Average Heart Year

by Jennifer Gooden on Friday, Jun 27, 2014

Up until this point in my life, whenever I would go to my twice-a-year cardiology appointments, I would do and hear roughly the same thing. I would get my vitals, EKG, and echo done and then my doc would come in and chat with me and tell me things look “about the same” and that I should continue with my meds—and I would keep on trucking along. That was my average heart year.

Unfortunately, this isn’t my average heart year. I would say that I am having the worst heart year ever. In my last blog post I explained that I was admitted for the first time in more than 20 years. Well so far this year I have been admitted three times, have worn no fewer than five Holter monitors, plus a BP monitor, and have had my first cardiac ablation.

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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.