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.

“But If We Can't Live Together... We're Gonna Die Alone”

Oct 5

Posted by: ACHA
10/5/2011 12:20 PM  RssIcon

By Kim Edgren

The title of my first blog post is a quote from my favorite show Lost. And after a recent trip to Hawaii, and my first real “episode” of congestive heart failure, it got me thinking: Can we ACHDers do this alone or do we really need to “live together” to survive?

Almost 45 this past spring, it was easy for me to chalk up being tired and not as full of energy to my age, full-time job, and three children—so gym visits became fewer and fewer. Night sweats? Must be that early menopause thing everyone talks about. Dull chest ache that I reported to my pediatric cardiologist back in February? “Most ACHDers don’t experience chest pain, must be gastrointestinal.” OK, lay off the salsa.

But a trip to D.C. to visit schools with my oldest daughter scared the you-know-what out of me—not because my oldest was almost off to college, but because I got off the plane and was exhausted. And the more I walked, the worse it got. By the time we left the airport I was ready for a nap. The few days we were there included a lot of walking, and even my daughter started to ask what was wrong when I opted for cabs.

I had a physical scheduled on my return, two days before I was to get back on a plane to L.A. for the ACHA conference then on to Hawaii for an early childhood conference. A funky EKG (I am blessed with a primary care physician who takes me seriously when I complain that I don’t feel right) started the ball rolling....

So sparing all the details, turns out my conduit was extremely blocked. My right ventricle had doubled in size, my ejection fraction had gone down to 19% and I got my first heart failure classification.

Both my pediatric cardiologist and my new adult congenital cardiologist said “we’ve never seen this before” and “we haven’t seen these symptoms presented before.” I can’t help but think I am not that original!

This brings me back to the quote: Our stories are important. Our collective data is important. We are here because of countless hours of labor and love by our parents, researchers, doctors, nurses and advocates. And now, more than ever, it is important that we all be part of that labor. If my story and hearing my symptoms can reach one other person who may have similar symptoms and encourage him or her to check them out, then think of what all of our stories can do!

I want to live. And I want to do it together, sharing our stories, triumphs, sorrows. Because in the end, no one wants to go it alone.

Kim Edgren was born in 1966 with transposition of the great arteries, pulmonary stenosis and ventricular septal defect. She recently became the proud owner of a Melody valve! When she is not trying her hand at writing she is busy spending time with her partner and three girls, managing her two child care centers and planning her next vacation.

Tags: Kim Edgren
Location: Blogs Parent Separator ACHA Blog

2 comment(s) so far...


Re: “But If We Can't Live Together... We're Gonna Die Alone”

good to know that tga'ers can get melody valves =) always wondered about that...

By heart_Friend on   10/5/2011 9:17 PM

Re: “But If We Can't Live Together... We're Gonna Die Alone”

Kim you are an amazingly brave woman and your decision to share your story will certain save and or enhance lives....xo

By Lisa Kelley on   10/6/2011 2:19 PM

Your name:
Gravatar Preview
Your email:
(Optional) Email used only to show Gravatar.
Your website:
Security Code
Enter the code shown above in the box below
Add Comment   Cancel