Posts by Ken Woodhouse

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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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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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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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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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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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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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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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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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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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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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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