46 posts tagged with Pulmonary Stenosis.

Living Through Uncertainty

by Kim Edgren on Monday, Jan 28, 2013

Last month was a difficult one—as I am sure it was for most of us—as our nation dealt with the senseless tragedy in Newtown, Conn. How anyone could commit such violence against innocence is beyond words and comprehension. What was usually a festive time of year was turned into a time of soul searching on how we go forward and prevent such acts from ever happening again. I know this blog is a place to reflect and discuss all things CHD, but it seems like status quo is just not quite right at this particular time.

We as a CHD community have endured, rallied, persevered and gone on in every aspect of our lives—from childhood to where we now stand, wherever in adulthood that may be. Fifty years ago many of us would not have survived infancy, never mind gone on to live productive lives.

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Wanting the Long Time and the Good Time

by Kim Edgren on Friday, Nov 09, 2012

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.

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Joy Versus Fear

by Kim Edgren on Thursday, Oct 04, 2012

September is always a hectic month and this one was no different. With the start of a new school year for three kids, new families at work, and all the other running around, it usually wears me out. But this September has been good—an uneventful “heart” month. I have had energy and few of my usual annoying symptoms. I’d like to think it is because I have been exercising a little more or eating a little better.

But maybe it has been a good cardiac month because I haven’t been waiting for the other shoe to drop or looking at every little thing as a symptom. I have been living my life. And that may be because of the big milestone our family hit at the end of August: Alex left for college—1,531 miles away!

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My Miracle of a Vacation, Part 2

by Kim Edgren on Tuesday, Aug 07, 2012

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.

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My Miracle of a Vacation, Part 1

by Kim Edgren on Monday, Aug 06, 2012

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.

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Congenital Heart Walks: Loving Every Minute

by Kim Edgren on Wednesday, May 16, 2012

Back in 2008, I headed off to Philadelphia to the ACHA National Conference with my partner Karen and our good friend Joan. This was my first conference and I knew a few minutes in it would not be my last. We had a great time, between the silent auction, the gala, and meeting new people both at the workshops and after. On the drive home we talked about wanting to do more—raise some money for this great organization. Maybe a big fundraising party or walk.

And then we got home. Life went on. Nothing got planned.

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Adventures in Congenital Heart Walks

by Kim Edgren on Tuesday, Apr 10, 2012

This blog post is late. And it is very short. Terri (who edits the ACHA Blog) is very patient. I had high hopes for writing this reflective blog about my adventure as Congenital Heart Walk – Boston Metro committee chair. I wanted to write about the whys, the hows, and the thoughts behind why I took on this great experience, but I have been too busy with the actual planning of the walk! I am attending to a lot of little details as we come upon the final weeks leading up to the walk, as well as to all those other little details in all the other areas of my life—which took up my writing time. I am sure you understand, and I promise a long, reflective, post-walk post!

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Lobby Day: Stories Stick with You

by Kim Edgren on Wednesday, Mar 07, 2012

I almost didn’t make it to Congenital Heart Lobby Day. I decided at the last minute to go (boy are flights expensive when you book them two days in advance!); my mother-in-law ended up in the hospital; and my flight almost didn’t happen because of “severe” weather. But, I made it to D.C. There were many great highlights—the wonderful reception at the Heart House, meeting with my Massachusetts Senate and House aides, and of course navigating the buildings and standing in the security lines. But what really stuck with me, and often does in my life, are the people involved in Lobby Day and their stories.

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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.