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Remembering the Caregiver’s Well-Being
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Growing Up with CHD, Into a Precious Piece of Art
A (Not So) Simple Question
Thankful for My First Hospitalization
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Fussing Over Your Features
Health Above All
The Long and Lonely Miles
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Disclaimer

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: ACHA Created: 5/17/2011 1:10 PM RssIcon
Our ACHA bloggers will post about many topics relevant to the CHD community.
By ACHA on 8/29/2012 3:30 PM

By Jennifer Gooden

Dear Coumadin,

Oh, Coumadin, you little 5 milligram orange pill that runs my life, how I hate you. There are so many reasons why I disdain you so. Let me count the ways:

By ACHA on 8/27/2012 10:21 AM

By Kelly Deeny

Choosing a doctor is as important to me as choosing a boyfriend. Stay with me on this...

With a boyfriend, I look for someone who’s thoughtful, open-minded and understanding. Someone who can see through my “I’m fine” responses and get to the heart of the situation. My doctor, no matter the specialty, must do the same.

By ACHA on 8/24/2012 2:11 PM

By Denise Zolla Pizzo

One foot in front of the other, and then constant movement in a forward direction is the parallel mission of Nels Matson’s body and mind, as he continues to use ultra endurance athletics to advocate for CHD. You may have read a mention of Nels’ recent event in the July ACHA e-newsletter. On July 14-15 he participated in the Back on My Feet 24-hour ultra run in Philadelphia, PA. As Nels long-term girlfriend and skilled massage therapist, I fulfilled the crew support role for him on this inspiring endeavor. I hope to share the insider perspective of life with an ACHDer who lives with purpose.

By ACHA on 8/21/2012 12:34 PM

By Meghann Ackerman

Back in college, my best friend and I had a weekly overnight radio show. Around 4 a.m. the caffeine in our systems would hit a magical level and things would start to get weird. During those extended Velvet Underground tracks we had plenty of time to talk and, almost predictably, the subject that would come up was our funerals.

By ACHA on 8/16/2012 8:11 AM

By Paul Willgoss

Two captains stand, as their players surround them in a circle, arms linked as the captains talk of friendship, love and those not here.

Two teams, who between them have kept the finest cardiologists of Europe (and beyond) busy for many, many years.

By ACHA on 8/14/2012 12:03 PM

By Lorelei Hill

While on the transplant list, I read a book written by a woman who discovered she needed a heart transplant. Her young, but failing body filled her with fear. Her once happy, loving demeanor changed dramatically. Falling into abandonment, she could not allow herself to feel anything but bitter.

It baffled me when even 10 years post-transplant her anger continued. Even though the author was not congenital, her angry words echoed in my brain. While I have struggled with the anger the writer had for herself, her medical team, and the abilities her friends and family had that she no longer did, I have to confess that yesterday evening, I somewhat got it.

By ACHA on 8/10/2012 12:03 PM

By Christy Sillman

The weekend before I entered junior high school my parents took us to the Great America theme park here in Northern California. It was there that I experienced my first anxiety attack, and I quickly fell down a dark hole of anxiety and depression that kept me confined to my home for almost two months. I felt so alone, and so shameful of my mental health issues. No one, not even the psychologists they sent me to, mentioned that anxiety, depression and other mood disorders are common in people with CHD. It would have made all the difference in the world.

By ACHA on 8/8/2012 2:42 PM

By Ellen Greenberg

One year ago, I was extremely ill. I was full of ascites and having belly taps every week to every other week or so. The doctors did not know what to do, or how to help me aside from pumping me full of diuretics and giving me belly taps. I began to look anorexic on top and without hips my pants would get lower as the day wore on and my belly filled up. It literally felt as if there was a water bed inside me.

Since this seemed to be uncharted territory for my physicians and the team, they started to call me the mystery. On a more personal note, this helped my self-esteem immensely. Can you hear my eyes rolling and sense the sarcasm? I began to make up a story about my belly and what I would “call the baby when she was born.” Mind you, the due date constantly changed depending on my size.

By ACHA on 8/7/2012 11:49 AM

By Kim Edgren

Note: For the first part of Kim’s blog post, click here. We revisit Kim as the family prepares to climb a mountain, the "straw of (her) mental back."

The plan was to hike up their mountain to the lake for a campfire meal and swim, and, we—and by we I mean me and the old folk—were to go by tractor. One at a time. While everyone else, including my 70-something year old mother and 5-year-old niece…. climbed.

This is the part of “The Edgrens Take on Norway” where Kim had a little breakdown—silently, in my head, but a breakdown nonetheless. I wanted to be that cool 46-year-old who hikes, not the lame cardiac chick who has to get a ride! I protested but after one look at my wife and mother—the look that pleaded “save us the worry!”—I climbed in.

By ACHA on 8/6/2012 1:52 PM

By Kim Edgren

I have just returned from what my kids have come to call “The Edgrens Take on Norway.” Seventeen of us, from 5 to 74 years old, traveled to Sweden and Norway for two weeks. We stayed in four cities, four hotels, and one home on the side of a beautiful mountain; we traveled by planes, trains, ferries, buses and automobiles and spent time with 15 of our Norwegian relatives who live on a picture-perfect fjord.

The trip was amazing in itself, but for me, it felt a little like a miracle. Just last year, almost to the day of our departure, I received my melody valve and stents after hitting my congestive heart failure status. The reality is, last summer this trip would not have been possible.