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 3/29/2013 11:47 AM

By Christy Sillman

I had the great honor of traveling to Washington, D.C. to be part of Congenital Heart Advocacy Day last week. Besides being a wildly exciting adventure that I’m sure to never forget, it was also an experience that brought about great personal growth for me.

I had no idea what to expect. I’m not particularly politically minded, but knew that having a voice in D.C. was important towards our CHD advocacy.

By ACHA on 3/27/2013 1:24 PM

By Kim Edgren

It is a busy time of the year—Congenital Heart Walk time! Our 2nd Annual Boston Metro Walk is just around the corner and I am excited to again be involved in the planning. Stressful? Yes! Crazy busy? Yes! But one of the most rewarding experiences for so many reasons. Should you get involved? Yes, and here is why:

By ACHA on 3/25/2013 10:58 AM

By Jon Ritchings, Jr.

A week ago we had Advocacy Day in Washington, D.C. This was my first time at this event and it definitely will not be my last. Two things really struck me about this annual event.

The first was being able to sit down with our representatives or their staff and tell our 30-second stories. It amazed me that as I spoke, you could see things click in their heads as they absorbed. Here it is, my 30-second story that I used:

By ACHA on 3/21/2013 2:19 PM

By Jennifer Gooden

Many people at some point in their life forget something. It might be something as simple as lunch at home, a deadline for a project, or an item at the grocery store. But as an adult congenital heart patient, forgetting to take medication can have pretty serious consequences.

I have been working the day shift (7 a.m. – 7 p.m.) at work for the last six weeks, which is the longest I have worked days in years. It really threw my body, memory and schedule for a loop! I think that there was about a week where I just forgot to take my meds. Oops!

By ACHA on 3/15/2013 1:05 PM

By Paul Willgoss

This blog is inspired by a conversation about my latest run, the Cambridge Half Marathon, and one of my many interests—personality models.

My mate expressed amazement at the consistency of my splits. Up to the point where I got tired, they were within 30 seconds of each other. This started a conversation about personalities that has ruminated on in the back of my head since Sunday and has come out of my fingertips now…

By ACHA on 3/13/2013 1:29 PM

By Meghann Ackerman

Every month I tell myself that I’ll get my ACHA Blog post in early. But every month something seems to happen that has me writing up to the last minute. This month, it was a sick kitty.

While I was sitting in the vet’s office yesterday, I realized how much I know about other people’s (and cats’) health. I’ve gone with Victor to enough cardiologist appointments and ER trips that I can give you his medical history, allergies and find the list of his medications he keeps on his phone. If he was unable to answer a doctor or nurse, I could fill enough gaps to keep him safe. Ditto for our cats.

By ACHA on 3/11/2013 10:25 AM

By Lorelei Hill

It’s been a year since my transplant surgery. What a difference a year makes!

Last year,

My husband, Mike, woke from a restless sleep. His brain was still fogging from the turmoil of packing bags, piling into the car, and driving for hours through blinding snow. In a private ICU waiting room, his aching muscles protested the nerve-pinching contours offered up by the uncomfortable hospital sofa. It had been a long night, with a longer year yet to come.

By ACHA on 3/6/2013 2:44 PM

By Becca Atherton

Throughout my life, my health has taken away things in my life that other healthy people could do. But I noticed that there was a cycle. I gave myself a day or two to cry, scream, yell about how life isn’t fair and tell my parents that I just wanted to be normal. Then after I got it all out, I sucked it up and I did what I knew I had to do.

Well, yet another thing came up on Monday that I was not able to do. My friends at school are all going away on a three-day camping trip for Spring Break. Now I am going to be very honest with you, I don’t think I would like camping—not one bit. I like sleeping in a comfy, warm bed. They were going to be sleeping in tents. I like having heating and a running toilet. They would have a campfire and a place behind the bushes.

By ACHA on 3/4/2013 11:07 AM

By Christy Sillman

I’ve decided to leave my local cardiologist, and it really feels like a messy breakup. I’ve given this cardiologist several chances to regain my trust and rekindle the working relationship we started off with, but there comes a point where enough is enough and you just need to walk away.

Advocating for yourself is hard. You sometimes have to be the “bad guy” and can often feel like you’re doing it all wrong. I think we’ve all been there—whether it’s calling for test results, asking for second opinions, or putting in special requests. We put ourselves out there hoping they’ll understand our needs.

By ACHA on 2/28/2013 8:43 AM

By Gwendolyn Russell

On March 30, 2012, I got a pacemaker. I named her Pacie. The first few weeks after surgery, I didn't understand what was happening to me. I vaguely understood the need for a pacemaker, and I struggled with the concept for a few months.

Before my pacemaker implant, I felt like I was living in a fog and it seemed that reality was feigning. I spent most of my days walking around in what appeared to be a dreamlike state.