Recent Entries
Remembering the Caregiver’s Well-Being
What's the Patient's Name?
Growing Up with CHD, Into a Precious Piece of Art
A (Not So) Simple Question
Thankful for My First Hospitalization
Thanking Our CHD Doctors
Fussing Over Your Features
Health Above All
The Long and Lonely Miles
The Waiting Game
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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.

Author: ACHA Created: 5/17/2011 1:10 PM RssIcon
Our ACHA bloggers will post about many topics relevant to the CHD community.
By ACHA on 10/28/2011 12:18 PM

By Alissa Butterfass

As I write this, it’s a Sunday night. My family is just back from a long weekend in Florida. In just three days, we found time to build sandcastles on the beach, splash in the pool, eat some good Cuban food and hang out with my cousins. I even got in two good games of Scrabble with Grandma. Aside from my 2-year-old vomiting on me during the turbulent landing at LaGuardia, it was pretty close to perfect.

Except for one thing...

By ACHA on 10/27/2011 12:11 PM

By Jennifer Rice

Hey everyone! My name is Jen and I am new to the ACHA blogger community. I was born with several congenital heart defects, and as a result I required multiple surgeries and hospital stints.

My hospital experiences have shaped my life in a huge way. I always knew even back in elementary school that I’d grow up to be a nurse—to give back to those who have literally given me life. So, fast forward to today and you’d meet a twenty-something Registered Nurse in the Pediatric Emergency Room in one of the busiest ERs in Maryland who wears her zipper proudly and lives a pretty normal life (whatever “normal” is, anyway).

By ACHA on 10/26/2011 10:34 AM

By Kelly Deeny

Imagine being roughly a year and a half old and having your chest cracked open. I'm imagining it right there with you because even though I experienced that situation, I have no conscious memory of it. I can't even fathom what the recovery period must have been like at that age. I had my tonsils out two years ago and I thought that was painful! So how did I get through all that pain and heal when I'm sure all I wanted to do was cry and fight? According to my parents, I was quite angry with them. And rightly so! (Just kidding—sort of).

By ACHA on 10/25/2011 9:59 AM

By Stephie Goldfish

Goodbyes are never easy.

A few months ago, one of my doctors informed me that she would be moving away so that she would be closer to her children and for her own spiritual journey in life. This news came as sort of a shock, only because I had thought I would be the one who would move away first. In fact, I had moved home for a few months to help my mother, but I had plans to move back.

My doctor is so stable that I took for granted that she would never move away. She helped me get stable and taught me how to be calm and breathe in oxygen. She once likened my life to a plate full of marbles—it’s been so unsteady. And, she once told me that my sister and I must have guardian angels as tall as the Empire State Building. She was also one of the main reasons for my moving back.

By ACHA on 10/21/2011 9:44 AM

By Christy Sillman

Ever since I was a little girl I have had this idea in my mind that I wouldn’t live past 30 years old. I’m not sure exactly why, but the catchphrase of “Doctors said she wouldn’t live past three days old and she ended up living 30 years” kept entering my mind. You see, I’ve been living my life on borrowed time. Every year feels like a gift or another year of defiance, and my pure focus has been on surviving.

By ACHA on 10/19/2011 8:54 AM

By Lorelei Hill

I have concrete evidence it exists.

In the spring of 2003, my husband Mike and I spent a weekend mulling over the pros and cons of perusing the adoption of a little boy we saw profiled in the “Book of Waiting Children.” As property of the Ontario Association of Children’s Aid Societies (OACAS), this book contains literally hundreds of photographs and stories of children hoping for a parent to come along and love them.

Struck by the size of the large grey binder, my heart ached when the receptionist handed it to me. On my first flip through, I saw a picture of a small boy and gasped, “He's beautiful!”

By ACHA on 10/18/2011 10:08 AM

By Stephanie Romer

#10 – Admit it… scars are hot!

#9 – Our childhood wasn’t “normal” – so it’s alright if yours wasn’t either.

#8 – Listening to a CHDer’s funky heart beat and us listening to your strangely normal one encourages cuddling.

By ACHA on 10/14/2011 10:34 AM

By Anthony Pugliese

The main reason and probably the best reason I can give for selecting the title of this post is that highs and lows are a natural part of life. I am not just speaking about medical issues here. We all have at some point in time in our lives experienced the highs and the lows. For example, being a straight A student and getting your first D, or the excitement of a first love and then the devastation of the first break-up. I think you get the picture. We all have highs and lows.

By ACHA on 10/13/2011 3:09 PM

By Becca Atherton

Hi everyone, my name is Becca. I love writing so I figured that I would start a blog and that since I am living with tetralogy of Fallot, pulmonary atresia and pulmonary hypertension I would write about being chronically ill.

I want to take my feelings and use the written word to transform lives and bring awareness to these diseases. I hope to impact people and let others know just how truly special people who are chronically ill are.

By ACHA on 10/12/2011 12:27 PM

By Paul Willgoss

How to start?

At the beginning:
It was a dark and stormy night. As the small blue baby was born, little did the world know what was to come…

At the second beginning:
The surgeon came out and said that as far as he knew it was a successful operation, but the next 24-48 hours would be critical…