Recent Entries
Expiration Date
Wise Owl: My Sacred Space
Taking a Slithery Challenge for CHD
It Starts With Us
Piecing Together My Identity
Never a Burden
An Open Letter to My Pediatric Cardiac Team
My Virtual Health
On Giving Up Control
CHD and the Snow


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 4/16/2015 11:32 AM

By Christy Sillman

Many of us have asked our doctors THE question:

“When will I die?”

“How much longer do I have?”

“Does _____ test result mean that I am dying?”

It’s on all of our minds, and I know many of us have actually received answers to these questions—and then surpassed the physician-stamped expiration date. I know I have, on multiple occasions.

By ACHA on 4/14/2015 1:47 PM

By Lorelei Hill

A favorite message of mine—“This place where you are right now, God circled on a map for you,” by Hafiz—is just one of many inspiring quotes you will read when you enter Wise Owl, a beautiful Spiritual Resource Centre that opened on Monday to a warm reception of community supporters, artists, writers, natural practitioners, and other healers.

With blessings and support from family, friends, and brand new friends who offered support as soon as they heard what we were building, my mother and fellow ACHA Blogger Yvonne Hall and I created Wise Owl. This has been our dream for as long as we can remember.

By ACHA on 4/10/2015 10:42 AM

By Kim Russell

Have you benefited from a prenatal diagnosis of your CHD baby? Have you searched out specialized adult care because of something you read or learned about in an ACHA resource or at an event? These sorts of efforts are examples of those funded by donors like yourself through individual giving or by donating to a Congenital Heart Walk!

By ACHA on 4/8/2015 9:29 AM

By Misty Sharpe

I am passionate about congenital heart disease. Why? I have a CHD. I have a nephew who also had a CHD who passed away very unexpectedly at the age of 20. I work professionally with children and young adults who have CHD. I am Committee Chair for Nashville’s first Congenital Heart Walk. I am a blogger for ACHA. My life is filled with all things CHD and I love it. I am, however, not my CHD.

By ACHA on 4/2/2015 11:49 AM

By Kelly DiMaggio

Since New Years, I’ve been into clean eating and at-home yoga. One of the mantras that tends to come up a lot in the yoga videos that I do is “head over heart, heart over pelvis.” Now clearly the pelvis part isn’t applicable here, but the “head over heart” sweet whisper has really resonated with me lately. Why? I can’t exactly pinpoint it—but it’s definitely been a good thing.

By ACHA on 3/30/2015 2:32 PM

By Yvonne Hall

Recently, during a casual conversation with my daughter about personal fears, Lorie revealed that being a burden has been a lifetime concern for her. Last year after her brain surgery, that fear became especially real. During her initial recovery, she admitted she’d despaired over why she had survived the transplant only to suffer this debilitating setback. Everything familiar had changed. She no longer knew who she was.

In retrospect, Lorie had been struggling with mild depression. She was tired of fighting to survive. Though strength had abandoned her, thankfully a subconscious determination to live took over. This clearly wasn’t the time to remind her that she had once again defied all odds by surviving a surgery so few do. She was simply tired of it all.

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.