118 posts tagged with Pulmonary Atresia.

The Face of CHD

by Christy Sillman on Wednesday, Jun 06, 2012

Where is our Michael J. Fox? What he’s done for Parkinson’s is amazing and commendable. He’s personalized the disease for so many out there who aren’t familiar with it. He’s owned his disease with such honor and respect.

Congenital heart disease is the most common birth defect and there are over a million adults living with congenital heart disease—why don’t we have a celebrity leading the fight for better research and delivery of care for adults with CHD?

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The Doors that CHD Opens

by Becca Atherton on Monday, May 21, 2012

This past Tuesday I went to speak to a local sixth grade elementary class about bullying. I talked about how people would call me lazy for using the elevator instead of the stairs, how people would call me ugly because of my scar, and how kids in middle school locked me in a closet and refused to give me my medication. I wanted them to know that bullying is never OK and that before they made assumptions based off of how people look, they need to take a step back and realize that there is more to someone than what meets the eye.

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How I Live Life by the Moment

by Jon Ritchings, Jr. on Monday, May 14, 2012

I'm kind of a silly guy in that I live my life by moments. I do my best to live my life in the moment, trying to notice everything that is happening around me. It is how I live my life these days. I no longer concern myself with things I have done in the past. Many of those things I can't do anymore and dwelling on that accomplishes nothing except developing resentment for what I have lost.

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CHD Makes Me a Better Mom

by Christy Sillman on Monday, May 07, 2012

Sometimes I can’t believe I’m a mom. It’s not that I never thought I’d be a mother—it’s just that I never allowed myself to dream that far into the future. It’s a protective mechanism I’ve utilized since I was very young. I focused my energy on the present, and tried not to get too bogged down by the long-term future. It’s the result of growing up against all odds.

That’s all changed; now all I think about is the long-term future.

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My Personal Set of Tools

by Jon Ritchings, Jr. on Wednesday, Apr 25, 2012

I think of everything around us as a tool. As part of the CHD community, I know that technology is definitely a tool. Technology has allowed us access to new surgical techniques and devices that have allowed many of us to live longer, more productive lives.

Experience is also a tool. Simple trial and error has answered many questions for my generation and the ones that are coming up now.

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An Open Letter to ACHD Cardiologists

by Christy Sillman on Wednesday, Apr 18, 2012

Note: I compiled these tips after informally polling some adults I know with congenital heart disease. I don’t intend to speak for us, but I want our voice to be heard by you—the cardiologist—because without you we’d be the lost survivors.

First off, I want to thank you for devoting your career to caring for adult survivors of CHD. It’s a specialty within a specialty and you’re on the cutting edge of lifelong congenital heart care.

Here are some things I have compiled after my informal poll that I think you should know about us:

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The Waiting Game

by Becca Atherton on Thursday, Apr 05, 2012

Hi everyone, I just wanted to give you all a quick update about the heart cath and pacemaker replacement I got a few weeks ago. During the cath, I had a horrible asthma attack and they had to give me a bunch of asthma medications while I was still sedated. The doctors took a look at some of the pressures in my heart and they aren't too happy about them. They are hoping, though, that it was just because I had eaten a bunch of salt the night before (I splurged! Haha.) and because of the difficulty with my asthma.

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The Feeling of Faith

by Jon Ritchings, Jr. on Monday, Mar 26, 2012

A recent comment about faith on an online ACHD group I belong to got me thinking. I listen to people talk about faith—people in the CHD community, my regular community, the religious community for sure. I see a lot of people go to church, temple, synagogue, and pull out their prayer rug. If you ask them why, they tell you it is their faith. They do these things because they have faith in their religion, their religious leader or their particular religious scripture. They have faith, as if faith were an object. As if the person who belonged to the right religion had the real faith and everyone else’s faith was somehow counterfeit.

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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.