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What's the Patient's Name?
Growing Up with CHD, Into a Precious Piece of Art
A (Not So) Simple Question
Thankful for My First Hospitalization
Thanking Our CHD Doctors
Fussing Over Your Features
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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 8/30/2013 10:19 AM

By Jon Ritchings, Jr.

In this day and age, community has taken on a new meaning. Nearly everybody in the world is logged into the internet. Social media sites like Facebook and Twitter, as well as search engines like Google and Ask.com, have made it possible for us to find and relate to others like ourselves, whatever that connection might be. In this instance, I'm talking about everyone whose life has been impacted by CHD.

By ACHA on 8/28/2013 12:12 PM

By Lorelei Hill

The other night my cat Tigger arrived at our back door with a gift for Mike and me. This typical occurrence throughout the summer months usually consists of a dead mouse or (on a really good night) the head of a young sparrow. Last night his offering came as a bit of a surprise. This time, he left us the entire sparrow.

Scooting Tigger inside the house, I noticed the poor bird’s left wing stuck out strangely from the side of his body. He held his eyes tightly shut. His little heart pounded with fear.

By ACHA on 8/26/2013 11:50 AM

By Christy Sillman

I recently realized that home feels different. Not my actual house, but the people who make up my emotional home. I’ve always felt safest with my parents. I felt nervous traveling without them, and always wanted to live close to them. It’s taken 12 years but the “CHD torch” has been passed—my husband and son are truly home to me now.

I know that this emotional transition is part of what “growing up” is all about, but when you have CHD it’s different. My parents have been through a lot with me. They’ve been by my side every step of the heart journey. Navigating and learning through the journey together has developed a stronger than average bond and a sense of security I never really had with anyone else—I guess that’s what unconditional love is all about.

By ACHA on 8/21/2013 12:22 PM

By Kelly Deeny

Life never happens quite as expected. In my last ACHA post, I wrote about my plan to raise money for ACHA by walking a mile for every set amount (for instance, $20 or $25)—that I'd ask family and friends to donate in support of a worthy cause that means so much to me. Roughly a month later I needed their help, but not as I expected.

My apartment building caught fire, leaving all the residents of the building without a home. In a very short period of time I realized that for all the hurdles and struggles I face, I am strong. I am resilient.

By ACHA on 8/19/2013 9:26 AM

By Becca Atherton

I've been struggling with some news that I got from two doctors of mine. It seems to be a recurring statement now that receiving a transplant when the time came would be too difficult and high-risk. A few weeks ago I got a call from my transplant coordinator. Hospitals have criteria when deciding who can have a heart transplant and she said one of these is that they usually like to have at least an 80% chance of surviving the transplant. Because of all the scar tissue I have in body, and something else called MAPCAs (major aortopulmonary collateral arteries), I only have a 50% chance of surviving the operation. We are having a difficult time getting a hospital to agree to perform the transplant when the time comes.

I hung up the phone and just cried onto my kitchen table. I've gotten bad news before, but my parents had always been there to hold my hand and comfort me. My sister questioned, "Why didn't you just ask her to call back?" Well, those of us who are in the medical world know how difficult and how long it takes to be able to get a doctor on the phone. So I told her that I didn't want to have play phone tag and I was tired of waiting—I wanted to know now.

By ACHA on 8/14/2013 2:08 PM

By Yvonne Hall

Never once during decades of caregiving did I ever consider I might lose myself in the process.

I was just 20 when I became a mom for the second time but this time was different. My baby daughter was diagnosed with a heart condition called tricuspid atresia and my world was about to change. Hindsight shows me that my entire adult life has been overshadowed by her condition and unknowingly somewhere along the way, I lost “me.”

This shocked me because I had a busy life filled with my own drama and her care was simply another element of mothering. Failed relationships, divorce, and working full time as a single mother to two young daughters were just some of the challenges I faced. My life was busy and I juggled my responsibilities like any busy mom or dad would do.

By ACHA on 8/12/2013 1:27 PM

By Paul Willgoss

I’m not sure where I’ve picked that comment up from, but it sums a lot of things up. A walk is, normally, easy-ish going. A challenge walk is less, or a lot less, easy—often with hills, quite often with big hills in. A walk, or even a challenge walk, will often have a couple of sit downs, maybe a defined lunch break…

A run is continuous pushing, limited breaks, lunch is taken on the hoof—if at all.

By ACHA on 8/9/2013 11:57 AM

By Stephie Goldfish

"Don't try to chase normal. Just try for progress." ~A poolside friend and former cancer patient

During our lifetime, we will meet many guides and teachers who will influence our decisions, for good and for bad.

Most of those who have had a hand in our life's direction won't always stay in our lives as we'd wish them to or as they'd wish us to. We move on in our journeys or they move on in their journeys.

By ACHA on 8/5/2013 1:39 PM

By Meghann Ackerman

Somewhere along the line cardiology appointments became just another way to mark the passage of time.

The first time I went with Victor to see a cardiologist was scary. The appointment was in an austere medical office building and the waiting room was packed with sickly octogenarians. I had no idea what was going to happen, what the doctor was going to say, or where I fit in to all of this.

By ACHA on 8/1/2013 11:34 AM

By Clare Almand

I’m not a huge fan of summer. Before you crucify me, hear me out—I like warm weather, sure. But I hate sweating. Sweating is gross. So to somewhat alleviate the summer heat, especially New York City summer heat, I try to wear light clothing that covers enough but is still the of the tank-top-and-shorts variety. And then just when I think I’m looking pretty good, I realize that I have purple bruises everywhere.

And I mean everywhere. I’ve bruised hips, ankles, knees, calves, thighs, and sides. I’ve even gotten a bruise on the back of my shoulder where it meets my armpit. How does one even bruise there? That’s the worst part—I have no idea how I got 90% of those purple eyesores. Is it just the Coumadin? Or is that just making the bruises that I have anyway a little worse? Do I have extra sensitive skin? Am I sleepwalker, bumping into walls and furniture in my apartment all night? Not that I want another issue to deal with, but that would actually be a reasonable explanation.