Recent Entries
It’s a Family Affair
Turning Grief Into Purpose
The Power of Knowledge
The Positive Side of a Doctor Deficit
Enough of Being a Good Guy
What’s Next?
What Heart Defect?
Writing About My CHD Journey
Embracing the Imperfections
“Commit to Doing What You Love.”


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 7/27/2015 11:20 AM

By Damion Martin

Today is my wife’s birthday.

I had the benefit of a 30-year head start on my wife with regard to CHD. Up until she met me, she didn’t have to worry about ejection fractions, echocardiograms, EKGs, beta blockers or things of that nature. She had other things to worry about like her career, a mortgage, a dog, and all the other things most people have going on in life. Up until we started dating I had my parents and brother as a loving and supportive team (who remain loving and supportive to this day). And yet, she willingly loaded the burdens of my health up onto her shoulders without a single complaint.

By ACHA on 7/22/2015 12:43 PM

By Stephanie Swirsky

Dan told me about his heart condition three days after we met. We were at a week-long national convention for Jewish teens, and if you wanted to get to know someone, you had to do it fast. I didn’t think much of it. Tricuspid atresia felt like some fancy word for something that happened long in the past, and now Dan was alive, healthy, and ready to embark on his first year at Yale.

Dan and I connected instantly. Even though he lived in Providence, and I lived in New Jersey—we stayed in touch, went to prom together, and even when we were in college (he at Yale, me at NYU), we continued to date.

By ACHA on 7/20/2015 11:59 AM

By Ellen Greenberg

I think that as CHD patients we may have more medical knowledge than the average person. It is said that knowledge is power. But as CHD patients, is this power helpful or hurtful? The more we know, the scarier our own personal situations can be. This knowledge can also be a helpful tool. I like to feel the positive—that it is power.

By ACHA on 7/16/2015 10:46 AM

By Meghann Ackerman

Generally, a doctor shortage isn’t good news. But a recent report from Washington D.C.’s WTOP on a doctor deficit has me smiling.

Right now doctors trained to treat adult congenital heart defects are struggling to keep up with their patient loads. I definitely have sympathy for the busy doctors and anyone having trouble scheduling an appointment, but I can’t help celebrating the good news hidden in there: People with congenital heart defects are living longer.

By ACHA on 7/13/2015 3:25 PM

By Paul Willgoss

I’ve written before of how personality types have been mapped to the superheroes of both DC and Marvel Universes—but what about the dark side? Who are our personality-matched supervillains?

Why are supervillains important? And our matched personalities more so?

Because if superheroes are the best of us—ideals that we can aspire to—then supervillains are the warning, if not from history, then from the pages of the comics and graphic novels.

By ACHA on 7/9/2015 1:42 PM

By Kathleen Hutchinson

As July approached, I thought about what to write this month. Do I talk about body image, how having a heart defect affects potential romantic relationships, or could I tweak a personal blog that I wrote shortly after my recent open heart surgery about what they don’t tell you before a major surgery?

None of them felt right.


By ACHA on 7/7/2015 1:18 PM

By Kelly DiMaggio

Last month I had the pleasure of tuning in to a webinar entitled “When is Transplant an Option in the ACHD Patient?” presented by ACHA. I must admit, the presentation certainly stirred up a lot of emotions in me, many of which I’m still working through.

Writing has always been my solace, but it’s been hard to capture the rollercoaster of emotions and experiences in words. Yet these are the narratives that must be told. CHD patients are living well into decades that many physicians never thought they would see, and it is up to us to keep paving the path forward.

By ACHA on 6/30/2015 2:27 PM

By Kelly Deeny

I’ve been absent from the ACHA Blog for a bit, and there’s a reason for it: I ran out of things to “say.” Recently, every time I sat down to write a new entry and join my fellow ACHA bloggers in chronicling our CHD journeys, my mind went blank.

“What haven’t I written about yet?” I wondered. “What new perspective, insight, advice, or milestone do I have to share?” I felt like a broken record and all the drafts seemed inconsequential compared to those of other CHD survivors.

By ACHA on 6/25/2015 2:10 PM

By Misty Sharpe

On May 16, Nashville held its first-ever Congenital Heart Walk and as I sit here getting ready to start planning for 2016, I find myself reflecting back on this year’s event. I checked the weather app on my phone all week because of the forecast calling for severe storms. In my mind, I pictured this perfect event with sunny weather, news media, record attendance and a smooth, complication-free program and walk.

Want to know something? None of that happened. What did happen that day reminded me of a very valuable lesson, though.

By ACHA on 6/23/2015 2:25 PM

By Lorelei Hill

This is a phrase I often use with my children. My 13-year-old son Riley tells me that he loves to play the drums, but the truth is, the thing he has committed to is playing Clash of Clans on the computer! My 12-year-old daughter Kate, on the other hand, tells me that she loves to draw. After an artist friend convinced her to let her light shine, Kate committed herself to being the best cartoon pet artist she can be. Evidence of this adorns my home and can be found throughout my office. Her commitment is so strong that she often neglects her schoolwork and house chores!

Despite all that, I give her credit. It takes a lot of dedication to truly commit to doing what you love. Our society seems to be moving so fast these days that most people, myself included, have many things we’d love to do, with little time to actually do them.