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.

By ACHA on 1/21/2016 2:18 PM

By Kim Edgren

Being a mom is a beautiful gift that at one point in my life I thought may never happen. Being a CHD mom comes with so many blessings, but worries as well. Along with all the worries for my children’s health and happiness comes fear of what my heath trials may put them through.

By ACHA on 11/10/2015 8:06 PM

By Kim Edgren

“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.

By ACHA on 8/31/2015 2:37 PM

By Kim Edgren

I have blogged in the past about waiting for the other shoe to drop from a cardiac standpoint. It is inevitable that there will be another intervention in my future. Of course the hope is that it is of the less invasive kind and not open heart surgery, but there are no guarantees.

I am always looking for some little sign that my heart status is changing and because of the subtle changes that led up to my heart failure the last time, I wish I knew what little memos my body may be trying to send me. And, I am hoping I didn’t get one last March.

By ACHA on 5/28/2015 9:51 AM

By Kim Edgren

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.

By ACHA on 3/9/2015 3:07 PM

By Kim Edgren

I was so grateful to be able to attend this year’s Congenital Heart Legislative Conference. It is always a great experience to be around such inspiring individuals, and have the opportunity to meet with our legislators on the Hill.

With Congenital Heart Awareness Week earlier last month, we have heard a lot of the statistics surrounding CHD—but most striking is the lack of funding. How can the No. 1 birth defect—and leading cause of birth defect-related deaths—be so grossly underfunded? A better question is, what are we going to do about it? And that is what the day on the Hill is all about!

By ACHA on 11/18/2014 10:47 AM

By Kim Edgren

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.

By ACHA on 9/17/2014 2:41 PM

By Kim Edgren

It was a great pleasure to attend the 7th National ACHA Conference in Chicago earlier this month. This was my third and as in the past, it was a very fulfilling experience. From the welcome sessions to the gala, having the opportunity to be around 500+ patients, family and medical professionals in support of our CHD community was both rewarding and inspiring. Young and old, many in the company of fellow CHDers for the first time, others with lifelong friends made at past conferences, together sharing… and dancing!!

By ACHA on 7/29/2014 9:32 AM

By Kim Edgren

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.”

By ACHA on 6/3/2014 10:12 AM

By Kim Edgren

Oftentimes my blog rotation comes up and I wonder, what the heck am I going to write about? This usually happens when there is a cardiac “calm” for me. I am sure many of you can relate. It is that time when things are going well. It’s the time you aren’t always thinking – or obsessing – about your health. During the “storm” – the symptom, the crises, the worry – there are more emotions to flow, to share, and to tell.

By ACHA on 3/11/2014 1:30 PM

By Kim Edgren

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.

By ACHA on 1/29/2014 1:49 PM

By Kim Edgren

I had another post all set to go today but after watching the State of the Union address last night I changed my mind. I promise—no politics! It made me think about resilience, community and commitments made, which led me to think about ACHA…. Well, OK, maybe that is my short attention span! But seriously, the months ahead are full of opportunities for our CHD community to make commitments, show our resilience and be heard. How, you ask?

By ACHA on 12/4/2013 12:10 PM

By Kim Edgren

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.

By ACHA on 10/15/2013 1:51 PM

By Kim Edgren

I sometimes feel like life with CHD is like the ebb and flow of the ocean. It sometimes is in the forefront of my daily life, crashing down on everything, and sometimes, it is way in the background, just a gentle reminder here and there. My health heavily influences where we are in that cycle, but even during the stable, “healthy” times, CHD can sometimes make its presence known in my day-to-day life.

CHD can be that little motivator. I have really been trying to maximize my current state of health and be as active as I can. While daily life can get in the way, I often find myself thinking two things:

By ACHA on 9/3/2013 12:10 PM

By Kim Edgren

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!

By ACHA on 7/15/2013 2:10 PM

By Kim Edgren

So… here is the scene:

I am on a bike, in a johnny that opens in the front. I am connected to equipment by 12 wires to my chest, two more for each index finger, and a blood pressure cuff. My nose is pinched closed and I am breathing into a plastic tube hanging from the ceiling.

By ACHA on 5/8/2013 2:09 PM

By Kim Edgren

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.

By ACHA on 3/27/2013 1:24 PM

By Kim Edgren

It is a busy time of the year—Congenital Heart Walk time! Our 2nd Annual Boston Metro Walk is just around the corner and I am excited to again be involved in the planning. Stressful? Yes! Crazy busy? Yes! But one of the most rewarding experiences for so many reasons. Should you get involved? Yes, and here is why:

By ACHA on 1/28/2013 2:15 PM

By Kim Edgren

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.

By ACHA on 11/9/2012 12:33 PM

By Kim Edgren

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.

By ACHA on 10/4/2012 10:20 AM

By Kim Edgren

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!

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.

By ACHA on 5/16/2012 10:48 AM

By Kim Edgren

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.

By ACHA on 5/11/2012 9:10 AM

By Abi and Livi

Note: Todays’ blog post is written by two of regular ACHA blogger Kim Edgren’s daughters. As Kim says, “I asked them to write a little something about having a mom with CHD and the post is their response.”

By ACHA on 4/10/2012 12:48 PM

By Kim Edgren

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!

By ACHA on 3/7/2012 2:44 PM

By Kim Edgren

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.

By ACHA on 2/23/2012 9:49 AM

By Kim Edgren

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.

By ACHA on 1/19/2012 2:54 PM

By Kim Edgren

I consider myself a hospital snob. It is easy for me because I live so close to Boston and some of the top hospitals for anything I have ever needed. When my friends ask my opinion about healthcare, I always steer them in that direction, even with many other hospital options much closer.

By ACHA on 12/21/2011 2:33 PM

By Kim Edgren

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.

By ACHA on 11/28/2011 3:59 PM

By Kim Edgren

Reflecting on Thanksgiving, I got to thinking what I am thankful for. The list seems endless these days, but more than a few times this past year a memory kept popping up for me. Years ago, during one of my many hospital visits, my roommate was there for a non-cardiac procedure. I am not sure of all the details but she was very vocal about not wanting to bring a child into this world who may have a cardiac condition like hers. I remember feeling sad for her, wondering how hard her life was. It also made me reflect on my own life then, and now.

By ACHA on 11/2/2011 2:30 PM

By Kim Edgren

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?

By ACHA on 10/5/2011 12:20 PM

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?