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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
Positivity Through Surgery and Recovery
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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 10/30/2013 2:31 PM

By Paula Miller
ACHA Member Services Manager

In reality, the advent of the internet and what I recall as an AOL chat room was my initial introduction to ACHA. It was in late 1998 or 1999 and like so many adults living with congenital heart disease (CHD), I was looking for someone like myself. I knew I couldn’t be the only one alive who was born with the birth defect. There had to be someone out there who understood me.

Two of the young people I “chatted” with were Karen Klein McNulty and Anthony Cordaro, Jr. They, along with Bonnie Paulsen, Kimberly Ochs, Mary Kay Klein (Karen’s mother), and Tony Cordaro (Anthony’s dad), were the founding board members of ACHA. What a vision they had! And what a turn my life was about to take!

By ACHA on 10/29/2013 10:04 AM

By Donna Smith

Think about the last time you received a newsletter from ACHA. You know it came to your email address. You know you enjoyed reading it. You know you appreciated the information. But were you amazed to find that little gem of a newsletter inside your e-mail box? Probably not.

But I was.

In fact, the newsletter’s appearance always seems a bit magical to me. No, not because I’m on some great medications! Not because I’m a technological dinosaur. But because I was on ACHA’s newsletter committee from 2005 through 2008 when ACHA’s quarterly newsletter was printed in hard copy and mailed to members’ homes.

By ACHA on 10/24/2013 9:25 AM

By Stephie Goldfish

I have only been in love once. And, I know the person I fell in love with loved me as much and as deep.

Our love felt a lot like the love depicted between the two characters in the 1970 movie, “Love Story.”

The heart is so treacherous, it can make one believe that a devoted love and endearment like this for one another is obsolete, almost unattainable, and hard to keep alive. The mind can begin to question why this love should survive, anyway. The mind can begin reasoning irrational and delusional things that make one go crazy and feel hopelessly sad.

By ACHA on 10/22/2013 10:12 AM

By Meghann Ackermann

It started right after we got married.

“When are you going to have a baby?”

In case my in-laws find this blog, no, this is not an announcement, but it’s something Victor and I have talked about. And, of course, his congenital heart defect has colored some of those discussions.

By ACHA on 10/17/2013 10:43 AM

By Michael Pernick

This blog series will feature a story involving congenital heart disease and the law. The blog posts may discuss contemporary or historical court decisions, laws or regulations, or other legal issues that relate to CHD. These posts are purely for entertainment and educational purposes and are not legal advice. Any opinions expressed in this series of posts are solely those of the author and do not represent the Adult Congenital Heart Association. The exact dates and names of the parties involved in this matter have been altered. This is the second part in a two-part series about medical malpractice; the first part can be read here.

About three years ago I developed a serious fever that did not go away with over-the-counter medicine. After two days, the fever had worsened and I went to a local clinic. When I told the doctor that I was born with a congenital heart defect, he followed the proper standard of care: He took a blood sample and sent it in for priority testing. Within 12 hours, he called me and told me I had an infection in my bloodstream and needed to go the emergency room immediately. I was quickly diagnosed with endocarditis, a bacterial infection in my heart. It took two months of extremely powerful antibiotics to eliminate the infection. Infective endocarditis can be fatal. I survived with no damage because the doctor in the local clinic followed the proper standard of care.

By ACHA on 10/15/2013 1:51 PM

By Kim Edgren

I sometimes feel like life with CHD is like the ebb and flow of the ocean. It sometimes is in the forefront of my daily life, crashing down on everything, and sometimes, it is way in the background, just a gentle reminder here and there. My health heavily influences where we are in that cycle, but even during the stable, “healthy” times, CHD can sometimes make its presence known in my day-to-day life.

CHD can be that little motivator. I have really been trying to maximize my current state of health and be as active as I can. While daily life can get in the way, I often find myself thinking two things:

By ACHA on 10/11/2013 12:25 PM

By Lorelei Hill

“Did I ever tell you about the night Grandpa King died?”

Nearly three years before my transplant, our family began the difficult, yet inevitable conversation of my potential death. Kate was six years old, Riley just seven. Having watched me grow tired and often collapse, and after many emergency room visits, the children knew that I was getting weaker. Being congenital heart patients themselves, they understood the constant inclusion of hospitals and doctors in our lives. But how much they grasped about the gravity of my condition remained an unknown.

By ACHA on 10/10/2013 11:33 AM

By Christy Sillman

Dear Young Christy,

It’s 2013, and guess what? You’re alive! Not only are you alive but you’re living a life you never could have imagined was possible. Spoiler alert – you have a loving husband, a gorgeous child, and a fantastic career. I know you’re really confused right now after open heart surgery, but I wanted to give you some tips to help you through the next few years.

By ACHA on 10/7/2013 12:52 PM

By Paul Willgoss

A lot of people have bucket lists – those things we want to do before we give in, start pushing up daisies or go and see the deity of your choice. For me? Well, I am greedy and have a selection of buckets, one of which is my run bucket.

By ACHA on 10/3/2013 11:49 AM

By Kelly Deeny

"There's a problem. You had an abnormal EKG." Those are words a congenital heart patient never wants to hear. Yet, that's exactly what happened to me about a month ago.

I had minor surgery at the end of August, one that involved the possibility of blood loss. As is standard procedure, I went for pre-admission testing a week beforehand. I actually made sure to mention that I was a heart patient, and they specifically did an EKG on me to be on the safe side. The following day I got the call that I had a right bundle branch block and that I needed to get approved by my cardiologist in order to have the surgery.