82 posts tagged with Transposition of the Great Arteries.

The Calm and the Storm

by Kim Edgren on Tuesday, Jun 03, 2014

Oftentimes my blog rotation comes up and I wonder, what the heck am I going to write about? This usually happens when there is a cardiac “calm” for me. I am sure many of you can relate. It is that time when things are going well. It’s the time you aren’t always thinking – or obsessing – about your health. During the “storm” – the symptom, the crises, the worry – there are more emotions to flow, to share, and to tell.

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No Longer the Smelly Girl on the Playground

by Ellen Greenberg on Friday, Apr 25, 2014

Previously I blogged about how I felt “like the smelly girl on the playground” because the state of my healthcare had declined to such a point that doctors were turning me away for migraine headaches. They would see my incision and basically turn me away.

Unfortunately, my cardiac care was not what it used to be when I was in pediatrics. So this was an extra frustration, especially as I am the one paying the copays. I am also the one taking a total of 15 pills a day. I have what I refer to as my "granny bag of meds”—and that’s exactly what it is only because my grandmother is on a few of the same.

I am happy to report things have changed for the better!

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Thankful for My First Hospitalization

by Jennifer Gooden on Thursday, Apr 03, 2014

I was hospitalized for the first time in 20 years last month. It was a pretty scary situation but when I look back, I am thankful for many things. I always think that things are what you make them. Here is why I am thankful for this little “hiccup” in my health:

I am thankful that I was at work—a children’s hospital’s cardiac ICU—when my heart started to act up. I sat down to do some charting on my patient and I felt like someone dropped a blow torch on my chest and that I was going to vomit. When the pain let up a little I noted that my heart was racing.

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The Community of Advocacy

by Kim Edgren on Tuesday, Mar 11, 2014

What an amazing trip to Washington, D.C., in late February to advocate on behalf of all affected by CHD! As the lone Massachusetts rep, I was joined by ACHA’s own Terri! It was a treat to spend the day with her and the other ACHA folks as they took action. It is a true testament to the dedication of those behind the doings of ACHA. From start to finish it was a great experience that had tremendous impact on the decision makers of D.C.

As my fellow blogger and advocate Michael so eloquently described in his post, The One-Two Punch, we had some specific “asks” of our representatives and senators: Support CHD surveillance by appropriating $7 million to the CDC, continue to fund NIH research, and for our representatives, to join our Congenital Heart Caucus. Those are the facts – the impact comes with the stories.

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Resilience, Community, Commitment

by Kim Edgren on Wednesday, Jan 29, 2014

I had another post all set to go today but after watching the State of the Union address last night I changed my mind. I promise—no politics! It made me think about resilience, community and commitments made, which led me to think about ACHA…. Well, OK, maybe that is my short attention span! But seriously, the months ahead are full of opportunities for our CHD community to make commitments, show our resilience and be heard. How, you ask?

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Battling Those Winter Bugs

by Jennifer Gooden on Monday, Jan 13, 2014

As adult congenital heart patients we often learn early to “listen to our bodies.” Not listening can have dire consequences. We learn when our bodies are giving us the yellow light to slow down and take things easy. For me it’s more of the red light – stop, something is wrong – that I have a hard time with. What can I say? I am a bit hard-headed!

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The Chance of a Lifetime

by Ellen Greenberg on Friday, Jan 10, 2014

In 2013 I took many chances; the best was the one of a lifetime. Not everyone was behind me on this decision at this time in my life—I was fighting a horrible cold and had just started a new job, and so my voice was pretty hoarse. However, with my go-getter attitude I thought if I don’t take this chance I would be doing ACHA and myself a disservice. I practiced, rehearsed, changed my song two weeks before, figured out the 90 seconds allotted, and with help, picked out my outfit the night before.

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Being a Sun vs. Being a Star

by Kim Edgren on Wednesday, Dec 04, 2013

About eight years ago, my friend Joan and I were both going through some medical challenges. We started to joke with our spouses that we were the “sun” because for that time it seemed like everything revolved around us.

Today, Joan and I joke that we wish we could be the sun every now and again, just without the medical drama. Having any health issue, especially those that are life-threatening, can make it feel as if everything revolves around the current crisis. And with chronic conditions such as CHD, sometime it does feel like we are like the sun—the only one in the sky.

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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.