Our ACHA bloggers cover many topics relevant to the CHD community. 

Remembering Stephen Brabeck, MD

Friday, Mar 16, 2018

Today we are sharing some thoughts and memories about Stephen Brabeck, MD, who we recently learned has passed away. A former member of both ACHA’s Board of Directors (BOD) and Medical Advisory Board (MAB) who practiced cardiology in California, he was also an adult who lived with congenital heart disease.

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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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Coping with My CHD: Finding the Balance

by Emily Moore on Friday, Feb 23, 2018

This past weekend, my husband and I went on an amazing adventure. We traveled to Michigan’s Upper Peninsula (UP) to go dog sledding. As in, we get our own pack of dogs, hop on a sled and they pull us through the beautiful UP winter woods. It was one of the greatest experiences of my life.

One of the better things about our vacation was being off my phone and living in the moment and enjoying my company—Mike. Our lives are so busy down in the city with our 9-5 jobs, rush hour traffic, and the mindless adult tasks of never-ending laundry and doing the dishes, that sometimes I miss that time to just be. Just be with myself, and with Mike, in the moment.

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My Name is Clare and I Have CHD (Part 1 of 2)

by Clare Almand on Tuesday, Feb 13, 2018

I don’t consider myself a “sick” person.

If I count the number of years that I’ve had heart surgeries and procedures, I can say that I’ve spent most my life “healthy”—as in “not being hospitalized.” Only 11 of my 31 years have I had heart issues that needed treatment, either medicinal or surgical. This ratio of “healthy” years to “sick” ones is an important part of my identity. And because I don’t consider myself sick, I don’t tell people regularly about my chronic illness.

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Because of CHD

by Deb Flaherty-Kizer on Tuesday, Feb 06, 2018

None of us wanted congenital heart disease. None of us wanted to endure the countless doctors’ visits, surgeries, and limited activity that often accompany CHD. However, looking back over my 60 plus years living with CHD, I have been able to find teachings and blessings.

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Remembering Dr. Francis Fontan

by Emily Moore on Tuesday, Jan 23, 2018

When you lose someone you didn’t know personally but who has made such an impact in your life, it can be an odd mix of emotions. There is sadness, of course, but maybe even a sense of loneliness. Simply said—they will be missed, and you miss them deeply—even if you’d never spoken to the person.

When someone like Dr. Francis Fontan dies, the world is silent for a moment. For me, I felt this sense of sorrow. I thought “Wow, this man is pretty much the reason I am alive today, and I never got to say thank you.” There is this sense of gratefulness mixed with grief.

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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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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.

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