Recent Entries
Summer Vacation: Tips for Traveling with CHD
How Do You Start Your Morning?
Balancing Parenting & Congenital Heart Disease
The First Five Years
My Journey to a Grateful Life
Now What?
Medical Home Sweet Home
Still Cliché’?
To My Village: Thank You
Education is Key in Spreading the Word about CHD


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: Created: 5/17/2011 1:10 PM RssIcon
Our ACHA bloggers will post about many topics relevant to the CHD community.
By ACHA on 11/27/2013 10:05 AM

By Nick Goucher

As the holiday season rapidly approaches, it’s hard not to think of what a roller coaster ride the last few years have been. It was two years ago during the holidays when I was told I needed heart surgery. Suddenly your whole existence changes and you don’t care about anything that may be under the tree; instead, every thought you have is just about getting through the ordeal and walking out on the other side to see the next Christmas.

By ACHA on 11/25/2013 2:53 PM

By Ellen Greenberg

This summer I graduated with my master’s degree. Upon graduation I became extremely sick with migraine headaches. For four months I laid in the dark of my bedroom feeling as if I was literally having open heart surgery on my head.

None of the doctors knew what to do for me. I had a CT scan both with and without contrast. Nothing was found. So the neurologist I had placed me on steroids.

This did not work. I was met with resistance for more steroids when the first round did not work. A headache specialist suggested admitting me for intravenous high dose steroids. The neurologist said “NO,” because “should something happen, her cardiologist would not be there.”

By ACHA on 11/22/2013 10:31 AM

By Clare Almand

I used to be a real health nut. I worked out at least five days a week, watched what I ate, and read all those fitness magazines. I felt strong. I felt healthy. I was 18 and terrified of gaining the Freshman 15.

My hard work and constant fear of being overweight successfully kept the pounds off for most of college. But over the years, the fear and discipline has gradually declined to the point where I have finally gained those 15 pounds, albeit eight years later.

By ACHA on 11/21/2013 10:26 AM

By Mary Kay Klein

In the summer of 1997 my husband and I returned from a trip to find four happy and excited young people sitting in our living room, talking about starting a group for adults with CHD. The group included the three co-founders of ACHA—our daughter Karen Klein, Anthony Cordaro, Jr., and Bonnie Paulsen—along with their friend Tanya De Herrera.

During the following year, the co-founders, along with three others, Tony Cordaro, Kim Ochs and me, formed the first ACHA Board. As ACHA's first president, Karen made multiple visits to a local attorney, and, with support and input from the Board and a generous donation from a friend, she put together the resources and documents needed for us to be incorporated in the Commonwealth of Massachusetts.

By ACHA on 11/18/2013 10:28 AM

By Yvonne Hall

I recently had the privilege of being invited to participate in a transition orientation day conference at Toronto General Hospital. The purpose of this day, aptly named “Crossing the Street,” was to help educate parents of teenagers presently at SickKids Hospital who will soon be transitioning to the adult hospital across the street. It was also designed to alleviate the fears of these teens and covered all topics of concern in making this adult shift in their lives.

Doctors, coordinators, counselors and experienced parents were available to offer information and assist everyone present with their questions and concerns. It was presented in a relaxed, informal environment where everyone could share experiences and answer questions regarding navigating to an adult hospital system.

By ACHA on 11/14/2013 3:06 PM

By Jon Ritchings, Jr.

Discipline. I think that society as a whole lacks it—there seems to be a laissez-faire attitude in general. A do-as-I-want-with-no-worry-about-the-consequences way of life.

Luckily, I am the opposite. In fact, I've been disciplined most of my adult life without even realizing it. I had to have discipline in order to live a normal life.

By ACHA on 11/12/2013 1:44 PM

By Steve Graham

Most people do not understand what I mean when I tell them I’m an adult congenital. I am part of a growing population of more than one million adults who live with a congenital heart defect (CHD). Thanks to the advances made in congenital cardiac surgery, many children are growing into adulthood.

Like most, after surgery, I thought I was “fixed” and would never have to worry about with my heart. No one told me or my parents about issues that could arise later in life. There wasn’t enough knowledge about long-term outcomes at the time of my heart repair to know with certainty what issues could arise.

By ACHA on 11/8/2013 9:27 AM

By Becca Atherton

Turning 21 is considered a big milestone in a lot of people's lives, especially since it means you can now legally drink and buy alcohol. But for me, this birthday is a milestone for a completely different reason.

It was 21 years ago when I was born and the doctors discovered that I had serious congenital heart defects and pulmonary hypertension. I was born blue and since my mom didn't have any prenatal care for me, no one expected or had any idea that I'd be as sick as I was. Before my parents adopted me, they were told by a doctor that I had a 13% chance of living to the age of five. But after four open heart surgeries, 45 pills and two SVN treatments a day, three allergy shots once a week, five different hospitals, more than 20 heart catheterizations, a blood draw once a month, a pacemaker/defibrillator placement and countless doctor appointments—I have reached 21 years of age.

By ACHA on 11/6/2013 9:05 AM

By Ken Woodhouse

Back in September, I had the unique opportunity to participate in two fundraising events in two cities on the same day. On the morning of September 21, I participated in the Cincinnati Congenital Heart Walk. In my role as an ACHA Ambassador, I staffed the mission table, talked with attendees about ACHA, and spoke during the opening remarks. I shared my personal story as an adult with a CHD and talked about the work that ACHA does for the CHD community.

During the post-walk festivities, a young couple approached me and asked if I would take a photo with their 10-month-old son, who also has tetralogy of Fallot. It was truly a pleasure and an honor to be asked. I was pleased to learn that this boy’s surgery—done months earlier—had gone very well and that his outlook was positive.

By ACHA on 11/4/2013 10:15 AM

By Jennifer Gooden

Some of us ACHDers have to take prophylactic or preventive antibiotics before routine procedures like teeth cleaning. I am one of those people whose cardiologist suggests that I take antibiotics before teeth cleaning and getting piercings. My doctor recommends taking antibiotics preventively to protect against a serious heart infection called bacterial endocarditis.