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 11/28/2012 10:33 AM

By Meghann Ackerman

Mid-November through the beginning of the new year is a time of decadence. Starting with the oversized bird, peaking with the spending on holiday gifts and ending with too many flutes of champagne, this is the time of year when we let moderation slip to the side and indulge some of our favorite vices.

During the rest of the year, we all still indulge from time to time and sometimes feel a pang of guilt for our unhealthy ways. But when it comes to having a congenital heart defect, where is the line between indulgence and leading a normal life?

By ACHA on 11/21/2012 9:41 AM

By Kelly Deeny

It warms my heart to know how many amazing friends I have! Each one brings something much needed into my life. The number of people I call “friend” is significant but their effect on my being is even greater. I could write for pages on just how remarkable each and every friend is to me but today’s blog post is dedicated to three of them in particular.

By ACHA on 11/19/2012 2:35 PM

By Karen Matson

Exactly two months ago, I received a new pulmonary valve.

This is my third one—first I had the one I was born with, which managed to get the job done in one manner or another for 44 years, then I got a new bovine valve in 2004. This time I was fortunate to be a candidate for the new Melody transcatheter pulmonary valve—really a revolutionary delivery device for a new valve. The miracle of my quick recovery and the amazing progress medical technology has made leave me thankful and humbled.

By ACHA on 11/16/2012 11:33 AM

By Ken Woodhouse

CHD: Congenital heart disease or congenital heart defect? Over the past year, as I have gotten more active within the CHD community, I have been asking this question more and more—both of myself and of other patients and advocates I meet. I often see these two terms used interchangeably, and perhaps I am just focusing too much on semantics. Perhaps it’s because I used to work as an editor and proofreader for a publishing company that I naturally discover inconsistencies in the written word. Maybe this is just a moot point and not worthy of a blog entry. Maybe not.

By ACHA on 11/15/2012 10:29 AM

By Ann Gianola
ACHA Research Manager

It was still dark when I laced up my shoes for an early morning run. I’d charted my route along the Schuylkill River, hoping to get in eight quick and quiet miles before the rest of the city woke up. See, I’m training for a marathon and on that morning’s run (one of dozens of morning runs), I realized that conducting research is much like training for a marathon. Conducting research is hard, sometimes a constant uphill battle, and there are always bumps or curves in the road. Rarely do we get to sprint to the finish line when conducting research.

By ACHA on 11/12/2012 2:40 PM

By Lorelei Hill

This morning’s message on my calendar was a quote from author/mentor Robert Holden. It read:

True happiness is what happens when you come face-to-face with fear and choose love.

I understand this message all too well. During these past five years, I have come face-to-face with my greatest fear. When I discovered my cardiologist was considering me for transplant surgery I denied anything was really wrong with me. In truth, I had gone in to see him because I no longer felt like my happy-go-lucky self. I was frustrated, and often angry.

By ACHA on 11/9/2012 12:33 PM

By Kim Edgren

Almost two years ago my oldest daughter and I were going to head off to Africa. Our plan was to join my aunt who runs a non-profit organization in Nairobi and visit their school in Kibera and nearby orphanage. We got all our shots, we made our plans. And then the trip fell through. Shortly after that my conduit failed and well, Africa fell off the grid.

Recently I have found myself saying, “I almost made it to Africa but that is not going to happen.” Up until a couple months ago, my health seemed to have dominated most everything in my life. I had endured my congenital heart defects with little impact on my daily life after I had a “corrective” procedure at age nine. Surgeries were usually done before I was symptomatic and most symptoms were a minor annoyance and reminder of my “condition.” Of course, that changed in the months prior to my Melody valve. It took a long time to fully recover from the damage to my heart.

By ACHA on 11/8/2012 8:39 AM

By Jon Ritchings, Jr.

It's three months post-op for me and I'm starting to run. I don't run far—maybe 500 or 600 feet before my lungs feel like they are about to explode and my knees are screaming for me to stop. I'm out there, though, and I'm doing it and I'm getting a little better at it every day.

People now ask me, why? It's so hard on your body and you’re gasping for breath. Especially with a heart condition. For me, there are three reasons.

By ACHA on 11/5/2012 1:11 PM

By Clare Almand

I’m extremely lucky. My condition is not so severe that it affects my everyday life all that much. I take medication daily and once a month I test my INR and transmit my ICD reading over the phone. And of course, every six months I see my cardiologist. But that’s basically it. And while that’s a good thing, there are some instances where I believe my lax attitude about my CHD is a disadvantage.

Hurricane Sandy hit New York City pretty hard. My roommates and I were fortunate enough to be in an area of Brooklyn that got through practically unscathed. We lost our cable and internet Monday night, but regained it by the next morning. Because the subway was flooded (like it was everywhere), we were able to spend most of the rest of the week in our apartment with electricity and water.

By ACHA on 11/2/2012 2:27 PM

By Stephie Goldfish

“What are you afraid of, Stephanie?”

These words keep playing over and over in my head lately. I was asked this question by my psychologist when I first sought out psychotherapy in 1991. At the time, I answered:

“Death. I’m afraid of death.”