Posts by Kim Edgren

It is that time of year that we reflect on what we are thankful for. This year, as I enjoy the calm of heart stability, it is easy to take that for granted. It is during this calm, however, that I should be the most thankful for that stability.

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“You do too much” is something I hear often, mostly from my mom—although I usually write it off as worry. Lately, however, I have begun questioning if there isn’t some truth to that. I feel as if the months have swept by at an unbelievable speed and each day is as busy as the next. I admit, I tend to take on a lot.

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Gratitude: “the the quality of being thankful; readiness to show appreciation for and to return kindness.”

These past couple months I have felt a lot of gratitude for all the support our team received in raising money for the Boston Congenital Heart Walk and for the help I receive from my family and friends in planning for, working towards and showing up on walk day. It takes a village and I have the best village ever.

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As we approach another holiday season, it is hard to believe yet another year has passed—another year older as a CHD patient!

I recently read an article in Cardiology Today posted by ACHA, “Adults with congenital heart disease present challenges, rewards for cardiologists.” It is an excellent article and worth the read.

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Back in grade school, pre-Rastelli procedure, I had a gym teacher say to me as I stood on the sidelines, “You look healthy enough to play!” The purple lips and purple fingernails along with my health record should've told her otherwise but yet, to her, I looked healthy enough to participate in her class.

The comment has stuck with me, and to this day I still struggle with looking like I should be able to be athletic and push myself more. And even in full congestive heart failure, I struggled with accepting the “I can’t” and still went with the “I’ll try.”

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What an amazing trip to Washington, D.C., in late February to advocate on behalf of all affected by CHD! As the lone Massachusetts rep, I was joined by ACHA’s own Terri! It was a treat to spend the day with her and the other ACHA folks as they took action. It is a true testament to the dedication of those behind the doings of ACHA. From start to finish it was a great experience that had tremendous impact on the decision makers of D.C.

As my fellow blogger and advocate Michael so eloquently described in his post, The One-Two Punch, we had some specific “asks” of our representatives and senators: Support CHD surveillance by appropriating $7 million to the CDC, continue to fund NIH research, and for our representatives, to join our Congenital Heart Caucus. Those are the facts – the impact comes with the stories.

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About eight years ago, my friend Joan and I were both going through some medical challenges. We started to joke with our spouses that we were the “sun” because for that time it seemed like everything revolved around us.

Today, Joan and I joke that we wish we could be the sun every now and again, just without the medical drama. Having any health issue, especially those that are life-threatening, can make it feel as if everything revolves around the current crisis. And with chronic conditions such as CHD, sometime it does feel like we are like the sun—the only one in the sky.

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A few weeks ago I went to Purgatory Chasm for a hike with my sister and her family. One thing I love about my current state of “heart healthy” is doing things like this—being out in nature, enjoying the elements. As we walked, we talked about going to the Grand Canyon. I am all for the concept of visiting the canyon, just not so much a mule ride.

So I spent the rest of the hike adamantly proclaiming I could hike down the canyon (no, I am not so naive to think I can hike up—still working out that plan!). Now, mind you, I know I am a heart patient, but still, I am all for the hike down one of the seven natural wonders of the world!

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Phew, what a month! The Boston Congenital Heart Walk just finished, my oldest will be home tomorrow after her first year of college, and spring and all its outside work is upon us. But today I will experience a role reversal of sorts as I bring my youngest daughter to the cardiologist.

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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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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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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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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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One of the things that I have enjoyed about writing for this blog is reflecting on what I have had to say, especially since it is often current to what is going on in my life at the moment. Reflecting on the posts is like reviewing my life and seeing how quickly things can change from one point to another. My last post ended with my realization that changes with my health will happen and sometimes, that sucks.

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I had a lot of ideas for this blog post, with the holidays and all the craziness that comes with them, but then I went to yoga last night. Yoga is something I have really enjoyed in the past and it was about this time last year that I started to make excuses to not go. Excuses are something I am obviously good at, looking back at my life last year.

With my new valve and all, though, I have been making an effort to work yoga back in. OK. Twice so far—but hey, it has only been a little over five months, right? Anyway, last night was try No. 2. I almost didn’t make it; I ran the kids around, couldn’t find my yoga clothes, forgot about dinner.

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The title of this post is one of the lines from my daughter’s college essay about her night that she stayed with me in the hospital this past June as I recovered from my Melody valve procedure. Her reflection on that role reversal got me thinking about my own roles.

As it probably is for you, too, we have many roles; mine include wife, mother and daughter, to name just a few. In the days leading up to my procedure, it was often the worry over those roles that kept me up at night before I knew how this latest challenge would end: Would I be well enough to care for my kids? Would I still be able to make a living? And of course the big one—would I survive?

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