Friday, February 24, 2012

Let’s Get Ready to Lobby!

My next post for the ACHA blog is a preview of next week's Lobby Day in Washington, DC. It should be published later today.
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Next week, I will be traveling to Washington, DC—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. 2011 was a great year for the CHD community, but we still have a long way to go. With the ongoing support and leadership of our Congressional champions—Congressman Gus Bilirakis, chair of the Congenital Heart Caucus in the House, and Senator Dick Durbin, who successfully supported the Congenital Heart Futures Act into law—I am hopeful that this is just the beginning of many more wins for the CHD community.

In the Ready, Set, Lobby… handbook that ACHA provided to Lobby Day participants, we are asked to draft and rehearse our own 30-second story that we plan to share with the representatives in Congress that we’ll be meeting. The story should include three important components: an introduction, our key message, and the specific request. So here goes:

“My name is Ken Woodhouse. I am from Chicago and am a 30+ year CHD survivor. I had my first (and, so far, only) open heart surgery at the age of eight months; and to this day, I have lived a very healthy and active life with this defect. Unfortunately, however, I am in the minority; many CHD survivors have multiple complications and setbacks throughout their lives. Currently, there are not enough data available to ensure the long-term health and well-being of CHD patients. I am here to ask that you support the Congenital Heart Futures Act and consider joining the Congenital Heart Caucus. Thank you!”

Having never taken part in any formal lobbying activities before, I am especially excited about this opportunity. Not only will I have the chance to talk directly to lawmakers and their staff about something quite personal and about which I am very passionate, I look forward to meeting other advocates from across the country. Through my journey as a heart patient and my own blog, I have gotten to know some pretty amazing people; and this will be the first time that I will meet some of them in person. Together, I know that we can make a difference!

I most certainly want to attend Lobby Day next week, but I also feel that it is necessary for me to do so. I fully understand that a lot of CHD patients are unable to attend for a variety of reasons; thus it is even more important for those of us who can participate to go and make our voices heard. While it is impossible for us to relay everyone’s individual story during our brief meetings and elevator speeches, I trust that those of us who are there will represent the CHD community with the passion, professionalism, and persistence that we all deserve.

Although I think the following quote is sometimes a bit overused, it is still a pretty powerful statement that I will certainly be keeping in mind throughout my visit on Capitol Hill:

“Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.”
–Margaret Mead

To my fellow lobbying advocates, I will see you in DC! To the rest of the CHD community, wish us luck and stay tuned for the results. We will do our best to make you proud!

Friday, February 3, 2012

Six Months Later

August 3, 2011: It was a beautiful summer day here in Chicago. The sun was shining, the skies were clear and blue, and it was the first day in quite a while that it wasn't oppressively hot and humid. (You gotta love the Chicago summers!) It was a good day at work, and we ended it by bidding farewell to one of our summer interns. I was looking forward to a 15-20 mile ride along the lakefront right after I got home, followed by a relaxing evening with a glass of wine and probably a movie. My ride started out like many others in the past, although this one was pretty cool because I got to cycle past Marine One, which was parked near the lakefront path while President Obama was in town. A little bit farther down the path, I passed Buckingham Fountain and was planning on turning around just past Museum Campus to head back north for the ride back home. The next thing I remember was waking up in the emergency room at Northwestern Memorial Hospital. Although I was in no pain, I was completely unaware of what had happened. Little did I know at the time that this bike ride (and the accident which ended it) would change my life and eventually lead me to start a blog about living a healthy and active life with a congenital heart defect.

February 3, 2012: As anyone who has been following this blog knows, these last six months have been filled with more challenges and confusion than I would wish on just about anyone. However, thanks to the amazing support and patience of many family members and friends, the wonderful staff at the Adult Congenital Heart Association, and the numerous doctors who cared for me, I am in such a great place today! I am not only living with congenital heart disease, I am thriving with it! Although I've always enjoyed being active, I have stepped it up a notch. Over the next six months, I plan to get into a regular routine at the gym, train for the Chicago Half Marathon (I've never done any sort of running event before.), complete at least one more distance cycling ride, and begin studying to become certified as a personal trainer through the American Council on Exercise.

They say things happen for a reason, and I believe that to be true. The bike accident I had six months ago was a much-needed wake up call for me to keep a closer eye on my heart. While I certainly don't want to go through this crazy journey again, I am grateful for what it revealed. Not only did it uncover some medical issues that needed to be addressed sooner rather than later (of which I would have otherwise had no knowledge), it also led me to the top two ACHD cardiologists at the University of Chicago Medical Center, both of whom have been nothing short of amazing. I am very fortunate and most grateful for the outcome of this wild ride!