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 7/30/2013 10:48 AM

By Melissa Nelson

Trust your body she tells me
I never have before
Be friends with your body she insists
I don’t know how
Trust your body
Trust the fallible flesh that is mine
Trust the liquid flowing from my heart that so easily displays my bruises
Trust your body
Trust what I know is untrustworthy

By ACHA on 7/26/2013 10:12 AM

By Jon Ritchings, Jr.

I am grateful for my CHD. I know that isn't something you hear all the time, but it is true. Having a CHD has introduced me to two things that I may have never learned without living with a CHD.

The first is acceptance—the ability to take things and people at face value without judging. When I first went into heart failure, the disease spread so fast that I was forced to give up many of the things that I had loved to do, like canoeing, hiking, and weightlifting. Without these things in my life I was lost at first.

By ACHA on 7/25/2013 11:42 AM

By Jennifer Gooden

Late last year I shared with the ACHA community that I had gotten my dream job! I am working in the cardiac intensive care unit at a major medical center. This hospital also happens to be where I had all four of my surgeries (many years ago) and it is still the hospital I go to for my cardiac care now.

This job has challenged me in so many ways that I never thought possible. I get to work with some of the most astute medical minds in the world. They are a truly amazing group of people that have such a wealth of knowledge that I am dying to learn. Whenever I find time to pick the brain of a more senior nurse, I do! I ask about all kinds of cardiac conditions and blood flow patterns and medication dosages.

By ACHA on 7/22/2013 2:27 PM

By Alissa Butterfass

The other night my husband and I were watching the television show Restaurant: Impossible—Chef Robert Irvine visits a failing restaurant and over two days works with owners, chef and staff to revamp the business. In this episode, the restaurant's owner expressed doubt that her party boy son, who served as the restaurant manager, could change his ways to become the responsible adult necessary for the job. When my husband lamented that the mother didn’t have faith in her son, I said, well, it’s really hard for a person to make such a drastic change. My husband smirked at me asking, “And how would you know?”

I know because I am in the midst of drastic change.

By ACHA on 7/19/2013 10:42 AM

By Michael Pernick

In my first government job several years ago, I worked as a junior legislative aide for a legislator in New York. My responsibilities mostly focused on constituent services: When a resident of the district needed help, it was my job to try to help them cut through bureaucracy and get them the best possible services out of their government. Occasionally, instead of coming in with complaints about potholes or issues with their property assessment, people came in to share personal stories that spoke to the need for broader policy change.

Elected officials and their staffs hear from special interest groups, lobbyists, and organizations with policy suggestions many times each day. But it is surprising how rare it is for actual people to come in and tell personal stories – and it is astounding how effective those rare stories can be at catalyzing action in a legislative office.

By ACHA on 7/17/2013 3:23 PM

By Shane Tsai, MD

Today there are more adults than children in the United States with congenital heart disease. Just a few decades ago, many infants born with heart defects would not be expected to survive to adulthood. Now the long term survival rate is almost 90 percent. Unfortunately, there are few specialists trained to care for adults with congenital heart disease (ACHD) and many survivors fail to follow up with any cardiovascular specialist.

In my line of work, we like to say that when it relates to congenital heart disease, it’s not what you don’t know. It’s what you don’t know that you don’t know. Confused? There are a lot of myths and misconceptions about ACHD that contribute to the mismanagement of the condition.

By ACHA on 7/15/2013 2:10 PM

By Kim Edgren

So… here is the scene:

I am on a bike, in a johnny that opens in the front. I am connected to equipment by 12 wires to my chest, two more for each index finger, and a blood pressure cuff. My nose is pinched closed and I am breathing into a plastic tube hanging from the ceiling.

By ACHA on 7/11/2013 10:40 AM

By Christy Sillman

I know I’m not the only one who experiences some pre-appointment anxiety. Living with CHD involves periods of normalcy followed by extreme upheaval, and we never know when that upheaval will come. We’re constantly waiting for the “other shoe to drop” and regular cardiology appointments are often where those shoes fall off. So, it’s no wonder that the days leading up to our appointments can be a little stressful.

By ACHA on 7/9/2013 1:21 PM

By Lorelei Hill

“Remember last year?” my mother asked, grinning cheerfully, as we entered the great lobby of Roy Thomson Hall. My apparent look of deliberation led her to continue. “Remember… last year, you know, when we attended this very same conference?”

“Oh! Yeah,” I laughed, wondering for the first time what her experience had been at this same conference last year. It had been only three months since my heart transplant and it was essential that I secured a seat near the exit and as far from the masses as possible. Arriving a day ahead of the crowds, under an umbrella of uncertainty, my post-transplant shakes were relatively under control and the overwhelming pain I had fought in March and April had nearly ceased in May. Still, transference of infection was a huge concern for my transplant team at the time, and, as I was beginning to realize, for my mother.

By ACHA on 7/2/2013 10:10 AM

By Amy Basken
ACHA Public Policy Manager

Last night I bought into the latest social media sensation—ice cream bread.

It is so easy, it’s ridiculous. One cup ice cream and ¾ cup self-rising flour. Well, navigating the grocery store to find the self-rising flour was not so easy. But mixing the two together, plopping it in a mini bread pan and baking? Piece of cake—or bread.