Saturday, December 29, 2012

2012 Year in Review & 2013 Preview

One year ago today, I had a successful transcatheter procedure at the University of Chicago Medical Center to implant a stent into my narrowed left pulmonary artery. As regular readers of my blog will recall, this surgery was done as an alternative to the originally-recommended open heart surgery. To this day, I couldn't be happier with my decision to have chosen the far less-invasive procedure.

2012 has been a great (and busy!) year. Following my bicycling accident in August 2011, I became pretty involved with the CHD community. In addition to the blogging I have been doing for the Adult Congenital Heart Association, here are some of my other CHD highlights from 2012:

  • March: I attended Congenital Heart Lobby Day in Washington, DC, where I was successful in persuading my Congressman (Mike Quigley of Illinois’ 5th District) to join the Congressional Congenital Heart Caucus.
  • September: I completed the Chicago Half Marathon—my first-ever running endurance event—with an official race time of 2:35:05, raising over $1,700 for the ACHA.
  • October: I became involved with the Chicago Adult Congenital Heart Network as a patient advocate, and I joined ACHA's Public Policy Committee.

2013 is already shaping up to be an exciting year, with an increased focus on health and fitness. I recently completed my CPR/AED certification through the American Heart Association, and I am registered to take the personal trainer exam in April. In addition, I have already signed up for a few running and cycling events:

  • January 1: Commitment Day 5K
  • April 7: Shamrock Shuffle 8K
  • May 18-19: Cardiac Challenge (consisting of two separate events in New York):
    • American Heart Ride - Century Ride (May 18)
    • Healing Heart 5K Run/Walk (May 19)

I wouldn't be surprised if I end up registering for another event or two in 2013, but I'm excited with this initial lineup of activities. Hope to see you on the trail!

Thursday, November 15, 2012

The Terminology Debate

My next posting for the ACHA blog briefly explores the discussion/debate between referring to CHD as congenital heart "disease" or congenital heart "defects." It will be published tomorrow.
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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 that 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.

When I began acclimating myself to this new-to-me world of adult CHD survivors last year, I decided to do a bit of research. The AmericanHeart Association recognizes that the terms are used interchangeably but states that defect is more accurate. According to the AHA, “The heart ailment is a defect or abnormality, not a disease. A defect results when the heart or blood vessels near the heart don’t develop normally before birth.” Using this as an initial reference point, I found myself consciously trying to refer to my congenital heart defect rather than my disease. But in my experience, I’ve discovered that disease seems to be the much more commonly used term within the CHD community.

When I posed this question to some people I met at Lobby Day back in March, one woman described the distinction as she saw it: babies are born with a heart defect but they grow up having a disease, a lifelong condition that can be treated but not cured. In her mind, using the term defect implied that CHD is something that can be fixed and then forgotten about. Since that conversation, I have often found myself using the same explanation when talking to others about CHD.

Perhaps it’s because I was fortunate to grow up never really having to think of myself as a heart patient that I was reluctant to adopt the disease term initially. For a long time, I saw my own CHD as a defect that was corrected with surgery when I was eight months old. But getting slapped back into reality after I fell off my bike last year and being “reintroduced” to my CHD seems to have caused me to be much less stringent on the terminology.

I now find myself using the terms somewhat interchangeably, but I still think the discussion is intriguing. I would be interested in hearing other people’s thoughts about it, whether or not they have even considered it before. While I would guess there are some people who do not think too much about the terminology, I would bet that some others have strong opinions one way or the other. If you are so inclined, I invite you to post a comment in response to this blog entry and share your own thoughts. If nothing else, I think this (like any) discussion about CHD has the very real potential to increase awareness and knowledge about the disease/defects and the reality facing those of us who live with CHD each and every day.

Sunday, October 28, 2012

What a CATCH!

A little over a week ago—on October 20—the launch meeting of the Chicago Adult Congenital Heart (CATCH) Network was held. This new initiative is a patient-centered, inter-institutional network established to ensure that all adults with congenital heart disease in the Chicago area are receiving appropriate follow-up care. Knowing my involvement with ACHA, my cardiologist personally invited me to attend as a patient advocate; and I jumped at the opportunity.

The meeting included a variety of presentations by leading adult congenital cardiologists throughout Chicago, as well as one by Dr. Michel Ilbawi, Director of Pediatric Cardiac Surgery at Rush University Medical Center. Thirty-one years ago, Dr. Ilbawi was the first assistant in my open heart surgery. I was excited to meet this man who helped save my life as an infant, but I don’t think I was prepared for the emotions that came over me when I was in his presence. Dr. Ilbawi is a warm and humble man, but there was no questioning the great admiration and respect that his colleagues have for him. While listening to his presentation, I literally got chills as I thought about the direct impact that this man has had on my own life. It was an experience I won’t soon forget!

Me with Dr. Ilbawi
The content of this first meeting was geared primarily toward medical professionals and included presentations on the historical landscape and CHD surgery, insights from basic CHD research, CHD in pregnancy, and transcatheter valve replacement in adults with CHD, among others. But the day concluded with an open discussion about how to continue moving this network forward and ensure its patient-centered focus. Before I knew it, I was getting involved with one more CHD initiative.

Over this next week, I will be having conversations with a cardiologist at Rush University Medical Center, one of the coordinators of the CATCH Network, and some ACHA staff members to continue the brainstorming. I believe there is a lot of potential here, but it is essential that the CATCH Network moves forward with a specific plan and a clearly-defined set of goals. Furthermore, it will be equally important to collaborate with other local and national CHD resources and organizations—such as the ACHA—to ensure that individual efforts are complimenting, rather than duplicating, one another.

One thing that was particularly interesting (and also somewhat frustrating) to hear at this launch meeting is that there are not many well-established, local inter-institutional networks of ACHD programs and cardiologists throughout the country. (Atlanta, Boston, and Cincinnati were cited as exceptions to that statement.) One thing the CATCH Network aspires to do is to break down the barriers between local ACHD programs and the notion of doctors having patients that are exclusively “theirs.” What I experienced in that meeting room was a group of adult congenital heart specialists who wanted to work together to ensure the best possible care for their ACHD patients collectively.

I truly hope this spirit of collaboration continues and that, in time, Chicago will become a model of adult congenital heart care in the United States. I know this won’t happen overnight, but I believe the potential is there. The excitement in that meeting room was palpable, but the success of the launch meeting will only really be measured in the initiative’s longer-term outcomes.

Monday, September 10, 2012

The Power of One

My next posting for the ACHA blog highlights the past year (It was one year ago this week that I received the recommendation for a second open heart surgery.) and discusses the impact that just one person (and one year) can have. It will be published tomorrow.
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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.

When faced with a major heart health decision, Paula Miller, ACHA’s member services manager, single-handedly encouraged me to seek additional opinions and directed me to the appropriate resources to find additional ACHD care in my area. Russell, my ACHA Ambassador, shared his own experiences with me, calmed many of my fears, and answered my questions as a vulnerable “new” adult congenital heart patient. Russell also guided me to the Ironheart Racing Team, which I joined in December 2011 and that has helped motivate me to continue pursuing my love of endurance sports.

As an individual, I feel like I’ve accomplished a lot over this past year, both for myself personally and for the greater CHD community. I’ve gotten a much better grasp on my own heart health and have found a great ACHD cardiologist who wants to work with me for my continued care. After attending Lobby Day in Washington, DC, in March and then meeting my Representative personally in my home district the following month, I was successful in getting him to join the Congressional Congenital Heart Caucus. Last month, I passed a VO2 max test with a strong 36.5 result. This past weekend, I ran the Chicago Half Marathon with a time of 2:35:05 (just five minutes over my personal goal), and I raised over $1,700 for ACHA in the process. And later this month, I will be taking part in training for ACHA’s Ambassador program.

I have often been inspired by this popular quote from Margaret Mead:

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

However, I don’t think it was until this past year that I’ve really experienced this truth for myself, whether it was the impact of one person (or a very small group) on my own world or the impact that I have been able to have on the CHD community: by getting a Congressman to join the caucus and raising money for ACHA. It has been a yearlong journey for which I am very grateful.

With that said, I encourage you to decide how YOU want to make a difference, whether that be within the CHD community or elsewhere in your life. With a little bit of dedication and determination, you, too, can discover The Power of One. I admit that it can sound a bit clichéd at first. But it is truly an awesome and rewarding feeling; and once experienced, it will likely motivate you to continue doing even more. Do not underestimate the profound impact that you can have as one person, whether that be on just one other individual or on a whole community.

Saturday, September 8, 2012

It's About Time

At 7:00am tomorrow, I will join thousands of other runners for the 16th annual Chicago Half Marathon. As we cross the starting line, many of us (including myself) will set our watches, smartphone running apps, or other GPS tracking devices to monitor our running time, pace, and whatever else the more advanced models do. While my goal is to complete the half marathon with a time of 2:30 or less (which is consistent with the pace I've kept during my training runs), the numbers on the race clock are certainly not the most important element of time for me in tomorrow's race.

For me, tomorrow marks the culmination of a journey that started one year ago (almost to the day). On September 15, 2011, I walked into the cardiologist's office at Northwestern Memorial Hospital and received a recommendation for a second open heart surgery. (As many of you know, my first surgery took place when I was only eight months old.) A recent cardiac MRI had found an aneurysm in my main pulmonary artery. The next few weeks and months were filled with follow up visits to the hospital for additional tests, making the initial plans for surgery, seeking out second and third opinions from other cardiologists, and ultimately deciding on a far less invasive approach.

Tomorrow's race—my very first running endurance event and the farthest distance I've ever run in a single stretch—will be a time for me to reflect on this year-long journey. It will be a time to celebrate my health, while taking pride in the fact that I personally raised over $1,700 for the Adult Congenital Heart Association (ACHA). The time that I spend running through Jackson Park and on Chicago's Lake Shore Drive (with the expected perfect weather) will be a reminder of how fortunate I am to be able to complete this race at all, regardless of my pace.

I am somewhat competitive by nature, and I will admit that I found myself getting a bit frustrated during these last 14 weeks of training because I didn't feel like my pace or endurance level were improving all that much. But as my cardiologist even reminded me during my last visit, "Mr. Woodhouse, you're not 20 anymore." (That said, however, I wasn't much of a runner when I was 20 either, but I digress.) The results of my recent VO2 max text were fantastic, and my cardiologist told me there was no reason to not continue with my training and my plans to run the half marathon. He said that he looks forward to hearing how the race went, and he even made a generous donation to ACHA on my behalf. (I guess there was no way I was able to back out of the race anymore!)

I am running tomorrow in support of an organization that means so much to me personally. I am running tomorrow in honor of those adults and children with congenital heart defects who cannot do so and in memory of those who have lost their battle with CHD. But, most importantly, I am running tomorrow for myself. I am completing the half marathon to prove to myself that I can overcome new challenges and that I am just as strong as ever. Oh yeah, and I'm doing it to have fun, too!

Tuesday, July 24, 2012

The Finish Line is Only the Beginning

My next posting for the ACHA blog recaps my latest appointment with my cardiologist and looks at the opportunities I've had over the past year as a CHD patient. It will be published tomorrow.
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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!

After my appointment, I took some time to reflect on the past 12 months and to think about how my life has changed since I was suddenly reminded of my CHD after my bicycling accident last summer. I couldn’t help but think back to one of my earliest entries in my blog this past October, “It’s all about perspective. Attitude is everything,” when I was preparing for and fully expecting to go through my second open heart surgery later in the year. Although the road has taken a pretty significant detour since that point—namely that I didn’t have to have my chest cavity cracked open for another surgery—the basic idea that I wrote about then still very much applies today. I really do believe that attitude is everything!

Over the past year, I have been fortunate to have had the opportunity to meet some amazing people and participate in some important advocacy work for the CHD community. I met someone at Lobby Day in Washington, DC, who recognized me as the CHD cyclist and blogger from Chicago. I had a one-on-one meeting with my Congressional Representative in my home district to talk about the Congenital Heart Caucus, and I’ve stayed in fairly regular contact with his staff since then. I’ve been invited to take part in the ACHA Ambassador training this September. And I have my cardiologist now regularly asking me about what lobbying activities I’ve been involved in since he last saw me, followed by a very genuine thank you for doing what I do on that front.

It has been an exciting and sometimes overwhelming journey, but I feel like it is just getting started. There is so much yet to be done and so many opportunities ahead. When I run (or, more likely, jog and walk) the Chicago Half Marathon on September 9th, it certainly won’t be to strive for one of the top awards, nor will it be to break any records (aside from it being the farthest distance I will have ever run up until that point). Rather, it will be to overcome a personal challenge and to defeat my own negative thoughts of “I can’t do it” that I’ve had along the way. I know that I can; and I will! And when I cross the finish line for the Chicago Half Marathon, I’ll find a new one to go after.

Will you join me in supporting ACHA as I take on this challenge?

Thursday, June 28, 2012

It's My Health. I am in Control.

My next posting for the ACHA blog is about a lesson I recently learned (unintentionally) from an awkward colleague. It will be published tomorrow.
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I am lucky to not only have a job that I enjoy, but to also 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.

I think most people understand and respect the fact that a person’s health is a very personal matter. Our HR department makes it clear that participating in the screening is entirely voluntary and that our scores are confidential. (Results are sent from the third party provider directly to our homes. Our employer never sees them.)

As an adult CHD patient who advocates, fundraises, and blogs publicly about the issue, I am pretty open about my heart health. Colleagues and friends are sometimes reluctant to ask questions for fear of seeming insensitive, but I appreciate their interest. I am comfortable talking about my CHD, not only as a way of sharing my own story, but also as a way to raise awareness for the CHD community.

I also take a lot of pride in my overall health and level of physical activity, and I love bicycling. Most people who know me—whether in person or through my blog—are aware of this passion; and most understand the basic lifestyle that typically accompanies any athlete: healthy eating, no smoking, etc.

With all this being fairly common knowledge about me, I was surprised to be caught off guard when I went for my annual wellness screening a couple weeks ago. While filling out the necessary paperwork, one of my colleagues sat down next to me to do the same thing. (Unfortunately, this particular colleague doesn’t always understand or respect personal space.) While reading through the health questionnaire—out loud, no less—she eventually gets to the question about tobacco use. “Well, I know for a fact that this gentleman next to me is not a tobacco user,” is the next thing I hear her announce. I suppose this is her way of trying to interact with me casually, but I can’t help but feel my skin crawling. I simply ignore her.

Conveniently we work on the same floor, so she and I have a chat later that morning about the (supposedly) confidential nature of those health screenings. I remind her that they are intended to be private and that, even though her comment was actually a statement on my healthy lifestyle, it was not appropriate for her to make any remark one way or another. She did apologize, if for no other reason than being embarrassed about it or called out on her behavior.

Surprisingly, that encounter grated on my nerves for the rest of the day. Why would a passing comment, harmless as it was, get under my skin like that? Why was I—who talk and write openly about something as serious as a congenital heart defect—so bothered by an awkward colleague who made a statement about my lack of tobacco use? And then it hit me. Someone else attempted to take control of a conversation about my health without my knowledge or permission. Someone else, who has a loose connection to me at best, thought it was okay to make such a proclamation on my behalf.

As irritating as this was, it helped teach me something. I realized that one of the reasons I have become so comfortable being open about my CHD is because it was my choice to do so. No one forced me to post it on Facebook or to start a public blog about it. After privately struggling through some challenging heart health decisions last fall, I took the initiative on my own to make the conversation about my CHD much more public. It wasn’t anyone else’s decision. I was in control, and I was calling the shots.

I encourage you to do the same. Once you have the right tools and the necessary medical advice, take control of your own health. Become empowered and call the shots!

Sunday, June 3, 2012

14 Weeks to the Finish Line

Fourteen weeks from today, on September 9, I will take on my first-ever running endurance event—the Chicago Half Marathon. My training officially starts tomorrow. I am using HalHigdon’s 12-week half marathon training program, and I extended it to 14 weeks. (I simply decided to repeat weeks 1 and 2 twice). Truth be told, I am both excited and nervous about this journey ahead. I’ve never done anything like this, and my endurance for running is still pretty limited.

But the time has come for me to face this new challenge head on and work my way through the training schedule one day at a time. My goal is not to win the half marathon. My goals are to complete it successfully, to raise money for the AdultCongenital Heart Association, and to increase awareness of congenital heart disease. The challenges that I will face over these next 14 weeks pale in comparison to the daily challenges faced by so many CHD patients, both young and old.

Having taken part in a number of cycling endurance events over the years and having successfully overcome my own recent heart health challenges, I decided to sign up for this race to overcome a new challenge. I am running for those who cannot run, and I am running to ensure that ACHA’s much-needed resources and services for adults living with congenital heart disease can continue. ACHA was there for me when I felt most vulnerable, and the organization’s staff provided the support and information that I needed to navigate the confusing and sometimes-scary world of adult congenital heart care. This race is just one way that I hope to give back to an agency that has become so close to my heart in a very short amount of time.

I invite you to stay tuned here—as well as to my Facebook page and Twitter feed—as I embark on this new journey over the summer. While you’re at it, I also encourage you to support this great cause by making adonation on my behalf. I look forward to seeing you at the finish line (with water and snacks, please)!

Friday, June 1, 2012

Finding Balance

My latest posting for the ACHA blog explores my propensity to over-commit myself to volunteer activities and offers some tips on how to prioritize. (I think I need to learn to follow my own advice at times.) It was published this past Tuesday (May 29, 2012).
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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—the Captain Cardio’s Pace Makers—to raise awareness for the cause and money for ACHA).

As my family and friends know quite well, I like to get involved in a variety of things. But I often seem to find myself walking that fine line between being actively and productively engaged and being overwhelmed. In addition to my volunteer work with ACHA, I sing in two community choirs, am the treasurer of my condo association, serve on the wellness committee at work, and participate in a local young professionals’ group. Oh yeah, and I also have that little thing called a full-time job.

I was recently telling a friend of mine that, by getting more involved with ACHA and its work for the CHD community these past few months, I feel like I have really found my cause, in part, because, well, it is my cause. Over the years I have gotten involved with and donated to different organizations in support of a variety of worthy causes, from LGBT rights and bullying prevention to cancer care and HIV/AIDS service organizations. While I certainly have a direct or indirect connection to each of these other causes, something about being involved in the CHD community feels a little closer to my heart (no pun intended).

The challenge for me, now, is figuring out how I can be the most effective advocate for the cause in a way that allows me to stay actively engaged and enthusiastic about it without over committing myself. Now don’t get me wrong! I enjoy everything that I’m doing and oftentimes wish I could be doing even more (whether it’s for CHD awareness or any of the other causes I support). But I know that crossing that line to the point of being overwhelmed and ineffective is not beneficial to anyone.

Here are just a few general “rules” or tips that I try to keep in mind when it comes to my volunteer activities. However, I’m usually better at giving advice than taking it—even when it’s my own advice:

1)      Do what makes you happy. There are a lot of great organizations out there that are doing important work for a huge number of causes. Find your passion or passions and focus the bulk of your efforts on a limited number (1–3 perhaps) in order to have the greatest impact. And don’t worry if your passions or interests change from time to time. That’s just a part of life.
2)      Do what you can. Your best is all anyone can ask of you. Don’t compare yourself to others or feel like you’re not doing enough just because someone else may be doing more than you are.
3)      Learn to say “no.” (Truth be told, I’m still working on this one myself.) If you know you can’t—or don’t want to—do something, simply say “no.” If you need to step away from something that you are currently doing, find the best way to make the most gracious and least disruptive exit that you can. (Note: This is not intended as a way to back out of every little thing you may not want to do. Rather, it’s meant as a reminder to be realistic about what you can and cannot realistically commit yourself to.)

So what’s important to you?

Sunday, April 29, 2012

To the Starting Line!

My next post for the ACHA blog talks some more about my introduction to running. It will be published tomorrow.
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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 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. I’m on the staff Wellness Committee at work; and completely by random luck, the run/walk charity event that the committee decided to create a team for this year happened to be this one. (I actually missed the committee meeting where it was discussed.) The hospital is moving from its original home in Chicago’s Lincoln Park neighborhood to an expanded downtown location; the 5K race actually starts at the hospital’s original location and ends at its new site, with tours of the new facility being given immediately after the run.

Unlike many of those who will be running that day, I’m not trying to complete this race within a specific amount of time. I’ve run the same distance (albeit slowly) in my early training runs, and I know that I can do it. Personally, I’m using this event as a starting point—an initial benchmark—for my own half marathon training. The fact that this run—my first official race—benefits the hospital where I had the surgery that has allowed me to live a healthy and active live for over 31 years (so far) is just a very cool coincidence.

After talking with a couple friends who are avid runners, I’m not too worried about my slow start to the sport. One of them told me that just the fact that I’ve stuck with it for more than one or two training runs is a good sign. Another said that for a lot of runners, regardless of how conditioned they are, the first mile or so of any run isn’t all that fun. She said that the best part of running comes after you’ve gotten into it a bit and your body gets adjusted to the physical activity. You reach a point where you’ve built up your endurance and it’s almost as if you’re on automatic pilot. You’re still working hard; but you get into the “zone” and can just keep going much more easily.

I’ve definitely experienced the same thing with cycling; and there have been times on long-distance rides that—despite working hard—I have felt relaxed, focused, and able to endure much more than I thought I could. In those times, I have most certainly been in the “zone.” So while I don’t love running just yet, I’m looking forward to getting much more acquainted with the sport this year as I prepare for the half marathon in September.

On your mark… Get set… Go!

Tuesday, April 10, 2012

My Own Personal Lobby Day

Today I had the exciting opportunity to meet with my Congressman one-on-one as a follow-up to the CHD Lobby Day in Washington, DC at the beginning of March. Since Representative Mike Quigley was not available to meet with me personally while I was in DC, his staff offered this meeting while he was in the district. As expected, the meeting was brief (all of about 15 minutes), as the Congressman was going from one meeting to another. But I did get to tell my story, explain why I was there, and ask for his participation in the Congenital Heart Caucus. Rep. Quigley was pleased to hear about my overall health and my love of cycling. (We joked briefly about the challenges of biking in Chicago.) He even congratulated me for taking on the Chicago Half Marathon this summer.

As our meeting came to a close, he mentioned that Robyn, his staff member I met with in DC, had talked to him in advance about my visit and that she spoke highly of me. (Thank you, Robyn!) He also told me that he would be looking into joining the Congenital Heart Caucus and that one of his staff members would be following up with me about this. (I'm keeping my fingers crossed!) Just before I left his office, he thanked me for coming and for my persistence on this issue, and he wished me continued good health. While I suppose it's possible that he was just being politically cordial, I can't help but feel like I made a real difference this morning. I look forward to seeing what happens!

Thursday, April 5, 2012

Because Just Cycling Sometimes Isn’t Enough

My next post for the ACHA blog talks about my upcoming plan to take on the Chicago Half Marathon, my first-ever running endurance event. It will be published tomorrow.
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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. To some hardcore cyclists who insist on riding their two wheels year-round, I may not be considered a serious rider. While I do love riding, I apparently don’t love it enough to subject myself to riding through the infamous Chicago winters. This most recent winter was actually relatively mild; yet I still didn’t have the desire to bundle up and pedal head first into the biting wind chill or falling snow.

For me personally, the unofficial riding and running season is even more exciting this year. In addition to being able to get back on my bike as I’ve done in the past, I’ll be adding a new challenge in 2012: the Chicago Half Marathon, my first-ever running endurance event. After successfully getting through the roller coaster ride of health decisions and cardiology procedures this past fall and winter, I decided I needed to do something more. I needed to take on a new challenge to prove to myself that there’s no stopping me! I’ve been working closely with the staff at ACHA to create a team—Captain Cardio’s Pace Makers—to run this race in order to increase awareness of congenital heart disease and to raise funds for ACHA. I invite you to join me, whether on the route or by donating to the cause.

While I’ve slowly started getting into running over the past few weeks, I still have a long way to go before the race in September. But I am determined to do it! I realize that for a lot of athletes, a half marathon is not that big of a deal. But for many people, whether they are CHD survivors or not, it is a huge accomplishment. When I decided to register for the Chicago Half Marathon, I knew that I wanted to connect my personal endurance challenge to a cause greater than myself. The staff and volunteers at ACHA were there for me when it felt like I ran face first into a brick wall this past September and learned that I wasn’t entirely out of the water with my own CHD. Running this race to benefit ACHA seemed like an obvious decision.

When I cross the finish line on September 9th, I will certainly be celebrating the fact that I just completed my very first half marathon. (Who wouldn’t?) But I will also celebrate the one-year anniversary (almost to the day) of getting that recommendation for another open heart surgery from an ACHD cardiologist following my bike accident last summer. Fortunately, ACHA gave me the guidance I needed and connections to additional ACHD cardiologists for second and third opinions, who helped me realize that surgery wasn’t necessary at this point. The cardiologists that I decided to stay with for my ongoing care have given me the green light to start training for this race and are looking forward to hearing about my progress when I go for my next follow up appointment in July.

Yes, I will be hitting them up for a donation, too!

Saturday, March 31, 2012

Catching Up & Moving Forward!

It's been a while since I've written a blog post here, so I figured I was long overdue for one. Things have been pretty great since I got back from Lobby Day in Washington, DC at the beginning of March. There's an old saying that "No news is good news." In this case, it's true! Things have been getting back to normal, and I've been able to return to my regular day-to-day routines without having to think a lot about my CHD. That said, however, it's still something I am frequently aware of; and I suspect it always will be. But not having to think about it actively in the sense of it affecting my regular life has been huge! And the more I am able to do that, the more I am grateful for the healthy life I have.

Since I got back from DC, my March has been pretty packed with a lot of exciting things:
  • Sang in four very successful and well-attended choir concerts: two with the Sing to Live Community Chorus and two with the Windy City Gay Chorus (part of Windy City Performing Arts).
  • Rejoined the board of my condo association after a couple year hiatus and took on the treasurer role.
  • Registered for the Chicago Half Marathon and worked with the folks at ACHA to establish our team: Captain Cardio's Pace Makers! (We're looking for runners and/or supporters, so you should think about joining and/or donating!)
  • Got an appointment to meet with my Congressman in early April as a follow-up to Lobby Day! (Representative Mike Quigley was not available to meet with me when I was in DC, but his staff have been great; and I was recently invited to meet with the Congressman in person in his district office.)
  • Wrapped up my current position and prepared to start my new job (still with the same great employer, but I made an important lateral move) on Monday morning!
  • Celebrated my 31st birthday (which was this past Thursday) with some wonderful family members and great friends.
  • Took my very first flying lesson. That's right! I actually flew a plan over Chicago's lakefront and Navy Pier this afternoon! It was a pretty incredible and surreal experience!

Just before my very first flight lesson!

It's been a really great month, and I'm now looking forward to the training and studying that are ahead of me. In the coming weeks, I will start officially training for the Chicago Half Marathon (which takes place on September 9th), and I plan to begin studying for the personal trainer certification test. So far, 31 has been treating me quite well, and I'm looking forward to the adventures that this coming year will bring!

Thursday, March 8, 2012

Reflections from a Lobby Day Newbie

My next post for the ACHA blog shares my reaction to CHD Lobby Day on March 1st.
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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.

The night before Lobby Day, I attended the welcome reception and had the opportunity to talk with the father of a CHD patient; he and his wife have been coming to Lobby Day since the very beginning. As a newbie, I had to ask his thoughts on the tough question that kept nagging at me: “In this crazy town [Washington, DC] with so much going on and so many competing priorities, is our grassroots lobbying effort really making a difference?” He chuckled, knowingly, and gave me the answer I was hoping to hear: “Yes! It’s not easy and it takes consistent, ongoing work. But we have definitely made progress.” Little did I know at the time that the very next day—my first time lobbying on Capitol Hill for anything—I would already feel like I had made a difference and was having an impact.

Prior to attending our first formal meeting of the day, my fellow advocates from Illinois and I attended Senator Dick Durbin’s morning constituent coffee. As you may know, Senator Durbin is one of our champions, as he successfully supported the Congenital Heart Futures Act into law; and he is most definitely an advocate for the cause. When we met the Senator for our photo op, we introduced ourselves and told him why we were there. Before we could say another word, he enthusiastically thanked us and reminded us how important it was for us to be advocating for the CHD community. It was almost as if he were lobbying himself!

Left to Right: Ken Woodhouse, patient/advocate; Lena Morsch, patient/advocate;
Senator Dick Durbin; Betsy Peterson, founder, The Children's Heart Foundation;
William Foley, executive director, The Children's Heart Foundation—March 1, 2012

My three formal Congressional meetings ran the gamut—from thanking Senator Durbin’s staff for their leadership and ongoing support of this important issue; to directly but delicately making our case to Senator Mark Kirk’s staff in the midst of the Senator’s own health issues; to a one-on-one meeting with Representative Mike Quigley’s legislative assistant, who unexpectedly shared her own very personal story and connection to CHD. It was right then and there that I realized my solo visit to Representative Quigley’s office may have had the biggest impact of my day. This staff member and I have exchanged a couple emails since that meeting, and she has invited me to stay in touch with her going forward on this important issue. In addition, she put me in touch with her colleague in the Representative’s district office, with whom I am also hoping to establish a relationship.

Capitol Hill can be an intimidating place. In the days leading up to my trip to Washington, I had to laugh when I read through some of our prep materials, which stated, “Being on Capital Hill is likely to remind you of everything that you love and hate about the current administration and policies.” As someone who studied public administration in grad school, I was well aware of this; and I’ll admit there was some truth to that statement. However, the positive energy that was present among my fellow CHD advocates that day—an energy I felt even during my solo Congressional meeting—provided the encouragement and motivation that was necessary to do what we went there to do.

I am grateful to the new friends that I made during my trip, not only for their impact on me personally, but also for their unwavering dedication to this cause. (You are all an inspiration!) Whether or not you were with us in Washington, I truly hope that you will continue to find ways to share your stories and make your voices heard. I believe that we have some great momentum going, but we’ve got to keep it up!

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!

Tuesday, January 24, 2012

New Year. New Adventures.

My next post for the ACHA blog explores the exciting opportunities ahead for me in 2012. It's scheduled to be published tomorrow.
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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!

Having not been on my bike since my accident back in early August, I’ve been going a little stir crazy lately. This past weekend, I decided to join my local gym, and just yesterday I met with a personal trainer for the very first time. During our introductory meeting, I knew I’d have some explaining to do about my medical information (open heart surgery at eight months, getting a stent less than a month ago, and now on a post-procedure regimen of Plavix and baby aspirin). Oh yeah—and I listed “train for a half marathon or triathlon” as one of my exercise goals. The look on the trainer’s face was priceless as I gave him the elevator speech version of my medical history and the fact that I had done multiple distance bicycling rides over the past few years. I assured him that I was feeling great, that I was under the care of excellent cardiologists, and that I would formally get their okay the next day to start an endurance training program.

As I drove to my doctor’s appointment this morning (a follow-up for my recent stent procedure), the sun was shining here in Chicago, and I was feeling good. I hadn’t had any unusual pain or discomfort post-procedure, and I was looking forward to an appointment that didn’t require a hospital gown and an IV. My two cardiologists—the director and co-director of the hospital’s ACHD program—work closely together, and both gave me a clean bill of health at today’s appointment! When I told them I was interested in training for a half marathon or a triathlon—neither of which I had done before—they just said, “Great!” I was given no physical restrictions and told that, when I come back in the summer for my 6-month checkup, they want to hear about my training. (So now I have to be accountable not only to my trainer, but to two expert ACHD cardiologists, as well: Game on!)

Over the past month or so, I have started thinking seriously about becoming certified as a personal trainer and/or a USA Cycling coach as a way to compliment my love of riding and physical activity. Today’s appointment just gave me another boost of confidence, and I expect that I will start studying for the CPT (Certified Personal Trainer) exam in the coming weeks. I even got some great tips about it from my trainer when I told him that I was thinking about pursuing the certification.

Although I didn’t make any formal New Year’s resolutions for 2012, I feel like I’ve charted a new and exciting course (no pun intended) for the rest of this year. In addition to deciding between the half marathon and the triathlon, I need to select the major cycling event (or two!) that I’ll be doing. So there are plenty of exciting adventures ahead for me this year.

As I get ready to train for these challenges ahead, I am so incredibly grateful that I can do them. As someone who—prior to this past August—hadn’t been to a cardiologist in years, I never really thought of myself as a heart patient. But the journey that I went through the last few months helped me realize how truly fortunate I am, and it has caused cycling (and other forms of physical activity) to take on a whole new meaning. I now ride not only for myself (I do love it!), but also in honor and memory of those who cannot. And I hope that one day, when I’ve become a personal trainer myself, I will have the opportunity to work with clients who want to overcome their own physical obstacles—cardiovascular or not—because it has now become a very personal matter.

Monday, January 9, 2012

Electrophysiology Study

I went to the University of Chicago Medical Center today for my electrophysiology study to assess for arrhythmias in my heart that potentially may have caused my bicycling accident back in August. The result of the study was negative, which meant that they were unable to medically induce an arrhythmia (with the exception of a very brief one). Had the test come back positive (and they were able to induce an arrhythmia), it would have been followed by a serious discussion about me getting an implantable cardioverter defibrillator (ICD). While a negative result doesn't provide as clear of an answer for doctors regarding next steps, personally I'm pretty happy that an ICD is not a likely part of my immediate future. I have a follow-up appointment with the electrophysiologist next month to discuss options for ongoing monitoring of my heart's electrical activity.