118 posts tagged with Pulmonary Atresia.

An Impactful Change

by Kim Russell on Thursday, Sep 29, 2016

Have you ever considered the impact that the Adult Congenital Heart Association (ACHA) has had in your life? The true support they have provided for you as an adult with congenital heart disease (CHD)? Before writing this blog, I had never truly thought through how much ACHA has changed my life and that of my family. Thank you, ACHA, for all you have been to me for the past twelve years. Thank you for the experiences and friendships I have had because of all of you!

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The Dawn of a New Era in ACHD Care

by Christy Sillman on Thursday, Jul 21, 2016

I’ll never forget the moment I first realized I was receiving inappropriate cardiology care from a general cardiologist and discovered the Adult Congenital Heart Association (ACHA). I browsed the ACHA Clinic Directory and was so thankful that I had found this resource, but was also a bit bewildered. How does one become an adult congenital heart disease (ACHD) cardiologist? If I have several choices in my state, how do I know which ACHD program is better equipped to handle my care?

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To the Young Woman I Met

by Becca Atherton on Tuesday, Jun 07, 2016

On Monday, May 30, 2016, my dad drove my older sister, three of our heart friends and myself up to California for a short trip to Disneyland. We met up with our other heart friends for dinner in Downtown Disney that same night. The restaurant thankfully had let me make a reservation a few days before our trip and we were able to put enough tables together to get 16 people all together to eat. It was an amazing weekend filled with lots of laughter and amazing memories.

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Medical Home Sweet Home

by Christy Sillman on Tuesday, Apr 05, 2016

[Editorial Note: I am writing this blog from my nursing perspective]

One of the biggest issues in CHD care that is often not discussed is the lack of an appropriate “medical home.” What is a medical home? It is a primary provider of care that will look at their patient in a holistic manner. Some patients feel more comfortable with their cardiologist acting as their primary care provider, but I’m here to advocate for a non-cardiologist primary provider.

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Celebrating Firsts

by Jon Ritchings, Jr. on Thursday, Feb 25, 2016

One of the best things about living through open heart surgeries is all the new firsts you get to do afterwards. These are, of course, the same things you maybe were able to do in the past, but now you are doing them again for the first time post-surgery.

It is life-affirming to know you can do things you haven’t been able to do in years. Four months after my last surgery I ran a 5-mile Thanksgiving race. After 10 months, I was able to spend the entire day walking around and advocating with ACHA in Washington, D.C.

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The Salt Struggle is Real

by Christy Sillman on Tuesday, Dec 15, 2015

It’s that time of year—casseroles, soups, decadent dinners, parties out, and treats everywhere. As a heart patient it’s my most challenging month to keep my salt (sodium) intake under 2,000 mg a day (that’s the definition of a low-sodium diet). Lately my belly has been protruding, my rings have been squeezing, and my socks have become tighter. The salt struggle is real, folks—how do we get through the holiday season without fluid overloading ourselves???

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Passing the Heart Torch: Are You Up for the Challenge?

by Kim Russell on Tuesday, Dec 08, 2015

As a 55-year-old with a double inlet left ventricle, pulmonary atresia, chronic cyanosis, and recently-acquired pulmonary hypertension, I remain very active in the CHD community, both in Atlanta and nationally for ACHA. A couple of weeks ago, a local hospital called to ask if I would help find CHD adults to be on a panel at a recent teen transition conference. I have helped arrange and have participated in this panel discussion for several years, so I was excited to be a part of it again.

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Embracing All Kinds of Change

by Jon Ritchings, Jr. on Tuesday, Dec 01, 2015

I’m graduating—and with that, I will end my school career. Soon I’ll be interviewing and then working at a new job. This has me thinking about the sense of loss or excitement we can feel as we transition from one part of life to the next.

As congenital heart defect patients we often make transitions in our lives. Sometimes it’s a slow transition as our heart function declines and our bodies tire. Other times it is in the opposite direction as through surgery, medications, and changes in lifestyle, we get healthier and are able to physically do more.

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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.