165 posts tagged with Tetralogy of Fallot.

The Importance of Research to the ACHD Patient, Continued

by Melissa Hartman on Friday, Jan 11, 2019

To quickly recap from my last post on this topic: I addressed how questions about treating people who have congenital heart defects are answered—how do practitioners know what to do and that it will work?

Maybe you have heard of evidence-based practice. Healthcare providers rely on evidence-based research to guide their practice. In my last post, I addressed how that evidence is formulated and used.

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My Mixed Emotions

by Robert Grabel on Friday, Jan 04, 2019

Hey, I just became I bionic. Move over, Six Million Dollar Man…

The above is me being funny. I was told humor is one of the best ways to deal with the mixed emotions that can hit you when you’re fitted for an ICD. Sometimes it works. Sometimes not so much. Mainly, the humor is for me. It’s a good distraction from thinking that I now have an incredible piece of technology near my heart that’s helping me live. Speaking of mixed emotions, that’s a big part of the recovery process. I’m beyond grateful to be here (yes—here and alive!).

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Miss West Virginia: The Paradox of My CHD

by Madeline Collins on Tuesday, Aug 28, 2018

For as long as I can remember, I have felt that my heart condition was a paradox in my life, an inconvenient reality that did not match my body or spirit. A dancer since the age of two, I have spent most of my life on a stage asking for attention, yet wanting the scars of my surgeries never to be noticed. I wanted to stand out during every performance while always hoping that no one noticed when I fatigued quicker than my fellow dancers, or that my coloring was fading to pale by the end of a piece.

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Our Stories, Our Futures: Advocacy as a Lifelong Journey

by Ken Woodhouse on Tuesday, Mar 06, 2018

2018 marks the sixth year that I attended the Congenital Heart Legislative Conference in Washington, DC. Nearly 200 advocates from across the country—the largest number to date—descended on the nation’s capital for this annual event. Given the current political climate, like last year, I initially approached this year’s event with some apprehension and skepticism.

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My Story of an Unintentional Mistake

by Becca Atherton on Wednesday, Jan 17, 2018

About three months ago I messed up big time when it came to my health and medication. While it was all an accident, I didn't want to update and tell everyone what had happened because it was all my fault and I really didn't want to feel like I had to defend myself or reassure people that I didn't do it on purpose.

I forgot to take two weeks’ worth of one of my pulmonary hypertension medications.

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My Regional Conference Experience

by Jennifer Rogers on Friday, Jan 12, 2018

I recently discovered the Adult Congenital Heart Association, and I am so thankful that I did. As a young adult and college student living with CHD, sometimes there is a great amount of uncertainty that can come with it. I happened to be learn about ACHA’s Memphis Regional Conference this past October, and it struck my interest.

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Whatever it is that brings you joy, do that.

by Kathleen Hutchinson on Wednesday, Dec 06, 2017

Wow, where does the time go? This past year has flown by. It seems not much has happened but when I look back, a lot has happened. I continue to feel great and believe I am healthier than I’ve ever been.

At the beginning of the year, instead of New Year’s resolutions, I made a “to-do” list for the year. I can say I accomplished at least half, if not more, on my “to-do” list.

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ACHA ACHD Program Accreditation is NOT a Competition

by Christy Sillman on Monday, Oct 23, 2017

Historically, when searching for appropriate cardiology care, either as a child or an adult, we’ve had to rely on national “rankings” through lists like U.S. News Reports & World Report rankings, or through our own analysis of the transparent information presented in the ACHA program directory. It’s no wonder then, that when the first wave of ACHA ACHD Accredited Programs were announced, many patient’s first reaction was to view these accredited programs as a sort of ranking comparatively to other programs. I saw many comments on social media that included sentiments such as “I can’t believe ____ program wasn’t included!” or “where is _____ program, this doesn’t seem fair!”

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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.