Recent Entries
An Open Letter to My Pediatric Cardiac Team
My Virtual Health
On Giving Up Control
CHD and the Snow
Adventures, Old Friend
I Never Knew Life Could Be Like This
We Must Use Our Voices
Your Voice When You Don’t Have One
Settling in for a Fight
My Evolving CHD Identity


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 3/24/2015 11:52 AM

By Ellen Greenberg

Dear Pediatric Cardiac Team,

I’d like to tell you that April will mark a huge milestone in the course of my life, as it will be 30 years since that tiny first grader—me!—Ellen Jenny Greenberg, had her first of many surgeries. Yes, you read correctly—30 years since my classic Fontan procedure. I still remember explaining my surgery to my class, and one boy saying, “So you’ll be dead during it,” and my quick response was “No, the machine will be breathing and beating my heart for me.”

It would be a treat to somehow see all of you and give you a great big hug and kiss for providing me with this precious gift of life.

By ACHA on 3/20/2015 10:44 AM

By Jennifer Gooden

In December, my phone died. It super died. It got stuck on a loading screen doing an update and it was over. I couldn’t get any pictures or contacts off my phone. And at first I thought, “Awesome, now I will get a new great phone.” And then reality set in.

I went to the phone store, bought a new phone, and went home to plug in a bunch of phone numbers. I got my husband, my mom and my sister… and then several four-letter words came out. I realized that now I don’t have a phone number to contact my cardiologist or adult congenital heart team if I need to.

By ACHA on 3/18/2015 11:44 AM

By Deb Flaherty-Kizer

Preparing for surgery has brought out a bit of my dark side—I am a Type A person with a need for control. I don’t like things left to chance. I need to have everything worked out to the last tiny detail. While I am also a woman of faith and believe spiritually and intellectually that God, or a supreme being, is in control, it is not something I relinquish easily.

Surgery, however, is filled with many unknowns. For example, I don’t know exactly how long I will be in the hospital. When making plans to board our dog while I am in the hospital, I did not like not knowing when exactly I would be picking him up.

By ACHA on 3/16/2015 12:13 PM

By Meghann Ackerman

If you’re reading this from the greater Boston area, CONGRATULATIONS! Over the weekend it became official that we survived the snowiest winter since folks in these parts started keeping records.

While it’s great to officially have the bragging rights, this winter was a tough one, especially because of the shoveling. As the snow started piling up during the first storm I started worrying about shoveling.

By ACHA on 3/13/2015 1:57 PM

By Paul Willgoss

“Adventures, old friend!” is the cry of Don Quixote de la Mancha to Sancho his squire, and whilst one friend has called me the “Knight of the Woeful Countenance,” I hope my grasp of reality is somewhat firmer than Don Quixote’s. There is something important about living your dreams and tilting at windmills.

I’m still in the middle of the testing cycle that I mentioned a couple of blogs ago. I’ve been MRI’d, done the 24h ECG, and have the exercise test on Monday. Having just run a half marathon, I’m not exactly sure what it’s going to show but hey ho! Some of us would decide, probably rightly, that this wouldn’t be the time to seek out new adventures, but I tried that for a whole month and got bored and tetchy.

By ACHA on 3/11/2015 12:34 PM

By Kathleen Hutchinson

I never knew life could be like this.

A life without shortness of breath, a feeling of actually getting air when taking in a deep breath, reaching my ideal body weight (albeit by default from congestive heart failure treatment and open heart surgery), and being able to exercise without being discouraged by my mind wanting to push harder and my body saying, “Uh, no, we’re not doing that.”

By ACHA on 3/9/2015 3:07 PM

By Kim Edgren

I was so grateful to be able to attend this year’s Congenital Heart Legislative Conference. It is always a great experience to be around such inspiring individuals, and have the opportunity to meet with our legislators on the Hill.

With Congenital Heart Awareness Week earlier last month, we have heard a lot of the statistics surrounding CHD—but most striking is the lack of funding. How can the No. 1 birth defect—and leading cause of birth defect-related deaths—be so grossly underfunded? A better question is, what are we going to do about it? And that is what the day on the Hill is all about!

By ACHA on 3/4/2015 1:46 PM

By Lynda Tobin

It has been more than 200 years since Ben Franklin penned his famous line about life having only two certainties, death and taxes. As Americans, we are well aware of the latter and all know the consequences of not preparing for next month’s IRS deadline. But when it comes to preparing for our own life’s end, we fall pretty short. I am sorry to say, like it or not, and whether we have a CHD or other chronic illness or not, each of us will someday face dying.

By ACHA on 3/2/2015 2:25 PM

By Jon Ritchings, Jr.

I want to write a little about persevering in the face of a challenge. For more than a decade, the biggest challenge in my life was living in congestive heart failure and getting myself heart healthy enough to have surgery and reverse it. I accomplished that a little over two years ago now and my life is pretty normal again.

When finding this out about me, many people often tell me they wish I didn’t have to go through that. Well, I’m glad I did. It has impacted my life in a major ways. In fact, that one decade-long battle and the stories of other CHD adults really taught me how to settle in for a fight and persevere.

By ACHA on 2/27/2015 11:01 AM

By Katherine Buchanan

I grew up like a number of congenital heart disease patients, believing I was cured of my heart disease. As a youth, my heart story was a really fun conversation starter in any awkward icebreaker activities that various group orientations threw my way. My senior year of high school, as I prepared for college, I decided to use the story of my cured heart to explain my passion for community service.

Occasionally I would show off my scar in some V-neck top or ask my parents about my baby open heart surgery story, but that was the extent of my CHD identity. My open heart surgery experience served as a fun, upbeat story to share at parties or to set me apart from others, but nothing more.