46 posts tagged with Pulmonary Stenosis.

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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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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Ebb and Flow

by Kim Edgren on Tuesday, Oct 15, 2013

I sometimes feel like life with CHD is like the ebb and flow of the ocean. It sometimes is in the forefront of my daily life, crashing down on everything, and sometimes, it is way in the background, just a gentle reminder here and there. My health heavily influences where we are in that cycle, but even during the stable, “healthy” times, CHD can sometimes make its presence known in my day-to-day life.

CHD can be that little motivator. I have really been trying to maximize my current state of health and be as active as I can. While daily life can get in the way, I often find myself thinking two things:

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Conquering Control Issues at the Canyon

by Kim Edgren on Tuesday, Sep 03, 2013

A few weeks ago I went to Purgatory Chasm for a hike with my sister and her family. One thing I love about my current state of “heart healthy” is doing things like this—being out in nature, enjoying the elements. As we walked, we talked about going to the Grand Canyon. I am all for the concept of visiting the canyon, just not so much a mule ride.

So I spent the rest of the hike adamantly proclaiming I could hike down the canyon (no, I am not so naive to think I can hike up—still working out that plan!). Now, mind you, I know I am a heart patient, but still, I am all for the hike down one of the seven natural wonders of the world!

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Volunteering: In the Name of Research

by Kim Edgren on Monday, Jul 15, 2013

So… here is the scene:

I am on a bike, in a johnny that opens in the front. I am connected to equipment by 12 wires to my chest, two more for each index finger, and a blood pressure cuff. My nose is pinched closed and I am breathing into a plastic tube hanging from the ceiling.

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Ruling Out Heart Challenges for my Kids

by Kim Edgren on Wednesday, May 08, 2013

Phew, what a month! The Boston Congenital Heart Walk just finished, my oldest will be home tomorrow after her first year of college, and spring and all its outside work is upon us. But today I will experience a role reversal of sorts as I bring my youngest daughter to the cardiologist.

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Why Should You Walk?

by Kim Edgren on Wednesday, Mar 27, 2013

It is a busy time of the year—Congenital Heart Walk time! Our 2nd Annual Boston Metro Walk is just around the corner and I am excited to again be involved in the planning. Stressful? Yes! Crazy busy? Yes! But one of the most rewarding experiences for so many reasons. Should you get involved? Yes, and here is why:

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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.