45 posts tagged with Pulmonary Stenosis.

The Best Village Ever

by Kim Edgren on Thursday, May 28, 2015

Gratitude: “the the quality of being thankful; readiness to show appreciation for and to return kindness.”

These past couple months I have felt a lot of gratitude for all the support our team received in raising money for the Boston Congenital Heart Walk and for the help I receive from my family and friends in planning for, working towards and showing up on walk day. It takes a village and I have the best village ever.

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Piecing Together My Identity

by Kelly DiMaggio on Thursday, Apr 02, 2015

Since New Years, I’ve been into clean eating and at-home yoga. One of the mantras that tends to come up a lot in the yoga videos that I do is “head over heart, heart over pelvis.” Now clearly the pelvis part isn’t applicable here, but the “head over heart” sweet whisper has really resonated with me lately. Why? I can’t exactly pinpoint it—but it’s definitely been a good thing.

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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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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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“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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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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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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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.