84 posts tagged with Transposition of the Great Arteries.

“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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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 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.