Posts by Ken Woodhouse

We have had dozens of bloggers since this blog began who have been so open with their stories. If you are interested in blogging, too, we'd love to hear from you. Please email info@achaheart.org.

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Our Stories, Our Futures: Advocacy as a Lifelong Journey

by Ken Woodhouse on Tuesday, Mar 06, 2018

2018 marks the sixth year that I attended the Congenital Heart Legislative Conference in Washington, DC. Nearly 200 advocates from across the country—the largest number to date—descended on the nation’s capital for this annual event. Given the current political climate, like last year, I initially approached this year’s event with some apprehension and skepticism.

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Scars of Strength & Pride

by Ken Woodhouse on Thursday, Oct 05, 2017

Earlier this year, I posted a tweet that seemed to resonate with some of my followers:

As a child, I was very self-conscious about my scar. Today, it serves as a reminder of my inherent strength and resilience. #CHDlife

Whether or not a person has a congenital heart defect and its related scars, I think that many of us struggle with body image issues. We’re too fat, too skinny, too tall, too short, too hairy, or too smooth; we must fix these faults—at least that’s what popular culture wants us to believe.

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An Open Letter to my CHD

by Ken Woodhouse on Wednesday, Jul 12, 2017

Dear Topher,

I hate you! What have I ever done to you? I mean, seriously!? For seemingly no apparent reason, you have put me through some of the worst times in my life (both physically and mentally), and you caused my family and friends to worry about my very survival in the face of major surgery—not once, but twice. And knowing you, you may very well have plans to do so again in the future.

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The Importance of Allies

by Ken Woodhouse on Thursday, Dec 15, 2016

I admit it. I am stubbornly independent. I like figuring things out on my own, and I take pride in being self-sufficient. I enjoy helping and supporting others, but I am terrible at asking for help.

Of course the reality is that no one—with very few exceptions—is completely self-sufficient. In fact, our culture almost requires interconnectivity. Most of us are not growing our own food, working entirely for ourselves, and building and maintaining our homes in isolation. In most cases, our networks are necessary for our very survival.

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The Importance of Ongoing Advocacy

by Ken Woodhouse on Friday, Feb 19, 2016

Much like the need for lifelong care for those of us with congenital heart disease, so too is the need for ongoing (lifelong, perhaps?) advocacy for our cause. As many of us “insiders” know, despite being the #1 birth defect, CHD is significantly underfunded; and the general public is often unaware of who we are and what our unique needs are.

When people hear about meeting with their elected officials on Capitol Hill (whether you call it lobbying, advocating, or whatever), it can, unfortunately, bring a variety of unsavory images to mind—big money lobbying firms, power brokering, political corruption, backhanded deals, House of Cards, etc.

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Celebrating our Successes and Looking Ahead

by Ken Woodhouse on Friday, Sep 26, 2014

Earlier this month I attended ACHA's 7th National Conference (my first!) in my hometown of Chicago. The conference brought together over 500 CHD patients, family members, and medical professionals for a weekend of learning, sharing, and collaboration. What an amazing group of people to be among! For many of us patients, who can often feel isolated and alone with our CHDs, this was a wonderful opportunity to connect with one another, learn together, and share our stories and journeys with others who truly understand and can relate to our unique situations.

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Changing Cities, Transitioning Care

by Ken Woodhouse on Tuesday, Sep 02, 2014

From my perspective as an adult with CHD, one of the most unsettling things about moving to a new city—aside from saying goodbye to family, friends, and the city that I've called home my entire life—was making sure I got connected to another quality ACHD clinic. In late June, I moved from my home in Chicago to Washington, D.C., to pursue an exciting new job opportunity. Having fallen out of CHD care once before (as a teenager)—and having just gone through my second open heart surgery six months prior—there was no way I was going to let my CHD care fall by the wayside again.

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All I Want for Christmas is a New Pulmonary Valve

by Ken Woodhouse on Tuesday, Dec 24, 2013

... and that's just what I will be getting early in the New Year!

About a month ago (shortly after my latest round of regular heart tests), I got a phone call from my cardiologist. The gist of his call was to let me know that, based on the results of these tests, it's now time to think about (and start planning for) having my pulmonary valve replaced. He had consulted with the rest of his team, and the collective agreement was that it's time for intervention. (It's interesting to me how "intervention" can be an attempt at subtlety when the real meaning is "surgery.")

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Perspectives on Philanthropy

by Ken Woodhouse on Wednesday, Nov 06, 2013

Back in September, I had the unique opportunity to participate in two fundraising events in two cities on the same day. On the morning of September 21, I participated in the Cincinnati Congenital Heart Walk. In my role as an ACHA Ambassador, I staffed the mission table, talked with attendees about ACHA, and spoke during the opening remarks. I shared my personal story as an adult with a CHD and talked about the work that ACHA does for the CHD community.

During the post-walk festivities, a young couple approached me and asked if I would take a photo with their 10-month-old son, who also has tetralogy of Fallot. It was truly a pleasure and an honor to be asked. I was pleased to learn that this boy’s surgery—done months earlier—had gone very well and that his outlook was positive.

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Making a Difference Nationally and Locally

by Ken Woodhouse on Wednesday, Apr 10, 2013

Advocacy Day 2013—formerly known as Lobby Day—in Washington, D.C., was simply amazing! As many people know, this annual event, co-hosted by the Adult Congenital Heart Association and Mended Little Hearts, brings volunteers from across the country to Capitol Hill to advocate for congenital heart disease awareness and funding at the federal level. Everyone who attends it comes away with his or her own story of excitement, accomplishment, and admiration. And I am no different.

But what was most impressive to me this year (only my second year attending the event) were the overall numbers:

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The Terminology Debate

by Ken Woodhouse on Friday, Nov 16, 2012

CHD: Congenital heart disease or congenital heart defect? Over the past year, as I have gotten more active within the CHD community, I have been asking this question more and more—both of myself and of other patients and advocates I meet. I often see these two terms used interchangeably, and perhaps I am just focusing too much on semantics. Perhaps it’s because I used to work as an editor and proofreader for a publishing company that I naturally discover inconsistencies in the written word. Maybe this is just a moot point and not worthy of a blog entry. Maybe not.

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The Power of One

by Ken Woodhouse on Tuesday, Sep 11, 2012

This week—September 15, to be exact—marks the one year anniversary of receiving a recommendation for my second open heart surgery. One year ago, I was scared, overwhelmed, confused, and completely unsure of what the next 12 months would hold for me. Truth be told, I wasn’t even thinking that far ahead anyway. Rather, I was only focused on those immediate decisions that I had to make in the upcoming weeks.

This last year has been an incredible journey for me and one that I never would have imagined. When I think about The Power of One, I think about a few things: 1) the impact of one ACHA staff member (Thank you, Paula!); 2) the effect of one ACHA Ambassador (Thank you, Russell!); and 3) the things that I have been able to accomplish as just one individual over the past year.

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The Finish Line is Only the Beginning

by Ken Woodhouse on Wednesday, Jul 25, 2012

Yesterday was the first time I’ve seen my ACHD cardiologist since January. (It was exactly six months to the day after my last visit with him; that appointment was the initial follow-up for the stent procedure I had done in December.) While I like my cardiologist very much, it was great to not have to see him for half a year.

I’ve been feeling great since January, and my only potential concern going into this visit was that despite having been training for the half marathon for the past seven weeks, I don’t seem to be gaining much speed or endurance for running. However, my doctor was not concerned about this, given the fact that my endurance for cycling has not changed at all (I have my very first VO2 max test scheduled for next month just to compare it with the results of the stress test I had last August). He told me that as long as I stay hydrated and avoid running in dangerously hot weather, there is no reason why I should not push forward with the training. I told him that as long as I don’t have to get picked up by the slow bus before crossing the finish line, I will have achieved my goal!

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It’s My Health. I am in Control.

by Ken Woodhouse on Friday, Jun 29, 2012

I am lucky to not only have a job that I enjoy, but also to work for an organization that puts a high value on employee health and wellness. In addition to having a staff Wellness Committee (on which I serve), the company hosts annual wellness screenings, offered free of charge to employees on its health insurance plan. The screening provides a comprehensive health risk assessment, as well as early detection for a variety of health issues.

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Finding Balance

by Ken Woodhouse on Tuesday, May 29, 2012

I consider myself very fortunate to be an adult with a CHD who generally does not have to think about or actively manage his condition on a day-to-day basis. While I’m certainly always aware of it, my personal experience with CHD has been much less traumatic or severe than many of my peers. In part because of this, I feel it is especially important for me to be more involved in the cause. And it has led me to become an active volunteer with ACHA—as a blogger, as an advocate, and now as a runner (which has included being involved in helping to create ACHA’s very first endurance event team—Captain Cardio’s Pace Makers—to raise awareness for the cause and money for ACHA).

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To the Starting Line!

by Ken Woodhouse on Monday, Apr 30, 2012

Although I have not yet started the official training program for the half marathon, I’ve been going out for a few brief runs over the past couple weeks to start getting myself into the habit and routine of running. Truth be told, my pace is slow, my endurance is limited, and I don’t really love it—not yet, anyway.

To kick off my very first running season, I signed up for my first 5K race on May 12: Move for the Kids, which benefits the Ann & Robert H. Lurie Children’s Hospital of Chicago (formerly Children’s Memorial Hospital, where I had my one open heart surgery when I was eight months old). As exciting as this is for me personally, I didn’t even really plan it.

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Because Just Cycling Sometimes Isn’t Enough

by Ken Woodhouse on Friday, Apr 06, 2012

As someone who has always loved cycling and never really thought too much about running, I didn’t expect that I would one day write a posting like this … until now!

For cyclists, runners, and all-around outdoor enthusiasts, this time of year is especially exciting, as it marks the beginning of spring and the promise of warmer weather just around the corner. In the coming weeks, Chicago’s lakefront path and other outdoor trails will see a noticeable increase in the number of walkers, runners, rollerbladers, and cyclists. Even though I’ve already gotten in a couple brief bicycle rides in mid-March thanks to some unusually warm weather we got here in the Windy City, we’re coming up on the days when we can expect warmer weather with more consistency.

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Reflections from a Lobby Day Newbie

by Ken Woodhouse on Friday, Mar 09, 2012

When I first heard about Lobby Day, I knew I wanted to go. But there was even more to it than that. Knowing that I could go made it even more important that I did go. Even as a newcomer approaching this Lobby Day with high expectations, I was certainly not disappointed. Not only did I meet some incredible people—fellow patients, parents, and staff and board members from ACHA and Mended Little Hearts—but I also had the opportunity to interact with some great Congressional staff members on behalf of the CHD community.

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Let’s Get Ready to Lobby!

by Ken Woodhouse on Friday, Feb 24, 2012

Next week, I will be traveling to Washington, D.C.—along with other CHD advocates—to participate in my very first Congenital Heart Lobby Day on Thursday, March 1. This year’s theme is Celebrate and Motivate. The celebrating is important because of our recent successes, namely the passage and funding of the Congenital Heart Futures Act, which calls for increased research and increased surveillance for the CHD community. The motivating is equally, if not more, important, both for ourselves and for our members of Congress in order to keep this momentum going.

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New Year. New Adventures.

by Ken Woodhouse on Wednesday, Jan 25, 2012

I don’t know about you, but 2012 is off to a pretty fantastic start for me! After a challenging few months at the end of 2011, I finished the year with a long, but quite successful, stent procedure (December 29). I then rang in the new year with an electrophysiology study (January 9) that came back negative, meaning that I’m not a likely candidate for getting an ICD!

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Getting and Staying Motivated in 2012

by Ken Woodhouse on Wednesday, Dec 28, 2011

As the holiday season winds down, many people spend this time of year reflecting on the past 12 months, taking stock of both the good and bad in their lives, and thinking about how they want to improve themselves throughout the coming year. Oftentimes, people like to think of the start of a new year as a chance to hit the reset button, to put the challenges of the old year behind them, and to embrace the promise of new beginnings. As clichéd as that may sound, I suppose I’m no different.

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A Cyclist’s Journey

by Ken Woodhouse on Tuesday, Nov 29, 2011

This Thursday marks the 30th anniversary of my first (and, so far, only) open heart surgery. Although I had annual checkups with my pediatric cardiologist as a child, I never really thought of myself as a heart patient. Since I had my surgery when I was only eight months old, the scar on my chest feels more like a birthmark than a reminder of a major life event. My annual visits to the doctor always resulted in a clean bill of health. With the exception of football, I had no physical restrictions growing up.

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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.