Ken of Hearts

ACHA Blog: Reflections from a Lobby Day Newbie

2012-03-08T23:00:00.003-06:00

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!

ACHA Blog: Let’s Get Ready to Lobby!

2012-02-24T09:20:00.001-06:00

My next post for the ACHA blog is a preview of next week's Lobby Day in Washinton, 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 exited 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!

"50/50" (the movie) & My Decision to Become a CPT

2012-02-12T15:58:00.004-06:00

I'm not normally one to write movie reviews, nor is this posting intended to be all that groundbreaking. But I recently rented 50/50, the 2011 movie starring Joseph Gordon-Levitt. Inspired by a true story, the movie is about Adam (Gordon-Levitt), a 27-year-old who suddenly learns of his cancer diagnosis and his subsequent struggle to beat the disease. The movie's title refers to Adam's chances of survival with his particular type of cancer.

Having never faced a cancer diagnosis myself, I don't necessarily want to compare my own heart health journey with that of a cancer patient. However, I found myself relating pretty closely to Adam's journey, from having an overwhelming number of hospital and doctor's visits to dealing with the emotional burden of processing a ton of new information in order to make the best decision for yourself. In my mind, the movie provides just the right balance of serious and comical, and it offers (what I found to be) a pretty accurate representation of a young adult's struggle after suddenly being blindsided with a serious health issue. I think this quote from the movie's website sums it up quite nicely:

"50/50 is the story of a guy's transformative and, yes, sometimes funny journey to health ... reminding us that friendship and love, no matter what bizarre turns they take, are the greatest healers."

Without a doubt, friendship, love, and humor were extremely important while I was dealing with my own health challenges of 2011. And I would say that the journey was transformative for me, as well. I recently decided to pursue my certification as a personal trainer through the American Council on Exercise (ACE). Although I have always enjoyed being active, I never really thought about working in the health and fitness industry. However, learning what I did about other CHD survivors over the past few months made me realize how fortunate I am to be this healthy; and it sparked a new interest in a field I never even considered before.

I'm excited about this new journey on which I am about to embark. While there are many organizations offering the CPT credential, one of the things that most attracted me to ACE is its Advanced Health & Fitness Specialist Certification. While I expect that I will enjoy working with a variety of clients, I have a particular interest in working with individuals who are at risk for or are recovering from cardiovascular issues, and this advanced certification will allow me to do just that.

Six Months Later

2012-02-03T22:55:00.001-06:00

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!

ACHA Blog: New Year. New Adventures.

2012-01-24T20:46:00.000-06:00

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.

Cycling Explained

2012-01-12T23:51:00.000-06:00

Sometimes it can be difficult for a cyclist to explain why he or she has such a passion for the sport. While I'm not quite as hardcore as this guy, I think the video is quite funny!

Xtranormal: Cycling Explained
http://www.xtranormal.com/watch/12674956/cycling-explainedworkhardplay

Electrophysiology Study

2012-01-09T22:46:00.001-06:00

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.

Successful Stent Procedure

2011-12-31T17:11:00.000-06:00

On Thursday (December 29, 2011), I went to the University ofChicago Medical Center to have a stent implanted into my narrowed leftpulmonary artery. As instructed, I arrived at 11:00am to get prepped and to meetbriefly with Dr. AtmanShah, who would be performing the procedure. He told me that he expected itto take about two to three hours depending on how everything goes. I waswheeled into the cath lab at 1:00pm, and the procedure began.

I was sedated throughout it and recall going in and out ofconsciousness while I was on the table. Although I had no real concept of theamount of time that had passed, I got the sense that things were taking longer thanoriginally expected (in part because my back was getting sore laying on thehard table for an extended period of time). At one point, Dr. Shah informed methat they were having difficulty accessing the narrowed artery. He explainedthat, while passing through the site of the aneurysm (in my main pulmonaryartery) with the cath, it was tough to find the very narrow opening to the leftpulmonary artery on the other side. He said they had a couple more things theywere going to try doing but that there was a possibility that they wouldn’t besuccessful.

When I asked him what exactly that would mean, he said hewasn’t quite ready to go there yet but that, if they couldn’t access thenarrowed artery to get the stent in place, the only other option might beinvasive surgery. So there I was lying on the table, partially sedated, andthinking to myself, “Well damn, today’s procedure was meant to avoid anotheropen heart surgery!”

I must have received more sedation at that point because thenext thing I remember was waking up on that table and being told that they werefinally able to access the narrowed artery and that they had put a balloon in toopen it up. The doctors were now discussing whether or not to just leave theballoon in place or to go ahead and put the stent in as originally planned.Fortunately, Dr. Shah was in charge and felt that, as he and I had discussedprior to the procedure, the stent was the best option.

At that point, more sedation must have been given to me, asthe next time I woke up, I was surrounded by Dr. Shah and my two cardiologists,Dr. Svensson and Dr. Varga. I instantly thought, “Okay, either this is a reallygood sign or a really bad sign.” But they all had smiles on their faces andinformed me that the procedure was completed successfully and that the stenthad been placed exactly where it was intended to go! When I asked the doctorswhat time it was, they told me it was 7:00pm, six hours after I had firstclimbed onto that table!

I barely slept that night; but, then again, I don’t knowmany people who get a restful night’s sleep while in the hospital. Fortunately,everyone that I dealt with there was great. The medical staff enjoyed (at leastoutwardly) my corny humor while I interacted with them, and they quickly addressed any questions and concernsthat I had.

The next morning, Dr. Shah came to check on me and to sharesome more good news. He told me that within minutes of getting the stentplaced, the blood pressure at the site of the aneurysm went down considerably!This is exactly how the doctors were hoping my body would respond. Although Ihad experienced some mild chest pain and pressure overnight, all of my vitalstats and measurements looked excellent. The post-procedure x-ray, EKG, andechocardiogram all showed that everything was functioning very well. I wasreleased from the hospital right around 3:00pm and put on a regimen of Plavix and chewable aspirin.

Next steps:

Electrophysiology study on January 9
Follow-up appointment with Dr. Svensson onJanuary 24

ACHA Blog: Getting and Staying Motivated in 2012

2011-12-28T10:46:00.002-06:00

Below is my second posting for the ACHA blog, which was published today.
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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.

I’ve gone though my own share of health-related challenges this year, and I’m looking forward to putting those behind me as much as possible. But the reality is inescapable: for those of us with CHD, the journey is ongoing. There is no magic reset button that can erase all of our past year’s challenges and struggles and just allow us to start the new year with a completely clean slate.

But we can start 2012 with a new outlook and make a resolution to do everything in our power to always make the best of our situation, whatever it may be. For me personally, I find it easier to stay motivated and positive when I’m connected to a mission and pursuing a vision that’s larger than myself (perhaps that’s why I decided to pursue a career in the nonprofit sector). As an avid cyclist, I feel like I recently found the perfect thing that will keep me even more motivated than normal throughout 2012 and—hopefully—beyond.

The Ironheart Racing Team was created as a way for everyday endurance athletes to raise awareness for healthy heart living and congenital heart disease. About two weeks ago, I contacted David Watkins, the founder of Ironheart and a former ACHA board member, to express my interest in joining the team. Through a few emails and a great initial phone conversation, we talked about ways for me to get even more involved than just becoming a member of the team. David is actually in the process of expanding the Ironheart Racing Team to include five separate divisions, including one focused specifically on cycling. He explained that cycling is going to be a big part of the organization’s growth and that he’s looking for people to help him drive that effort forward. While our conversations have just been preliminary so far, I’m quite excited about what the coming year has in store.

So as 2011 comes to a close and we prepare to welcome 2012, I hope that everyone who reads this blog post is able to find the inspiration and motivation they need to make 2012 their best year yet! You certainly don’t have to be an endurance athlete to make that happen, nor does congenital heart disease have to be your driving force. But I am a strong believer that people can best pursue happiness and success by pursuing their passions. It’s your own life to live, and I hope you chose to live it the best way that you can.

Here’s to a safe, happy, and heart healthy New Year!

Electrophysiology Consultation

2011-12-17T12:16:00.000-06:00

This past Tuesday (December 13, 2011), I met with Dr. John F. Beshai, the electrophysiologist at the University of Chicago Medical Center. This was an initial consultation (at the recommendation of Dr. Svensson) to assess for arrhythmias that may have caused my bike accident back in August. As expected, Dr. Beshai recommended an electrophysiology study (EP study), which has been scheduled for January 9, 2012.

Depending on the results of the EP study, we talked about the possibility of getting an implantable cardioverter defibrillator (ICD), which would constantly monitor my heart rate and rhythm and -- should it detected a very fast, abnormal rhythm -- would deliver energy directly to the heart, causing it to beat normally again. At first, this sounded rather extreme to me, especially since I have never been aware of any heart rhythm issues. Then again, I didn't even feel the arrhythmia (NSVT) that I experienced back when I was in the hospital right after my bike accident. One of the many things I've learned about CHD over the past couple months is that patients with tetralogy of Fallot are at a significantly higher risk for arrhythmias, which have the potential for causing sudden cardiac death.

Once the EP study has been done, I intend to meet with both Dr. Beshai and Dr. Svensson to review the results and talk about next steps. While I don't really want to get an ICD, it may be necessary. That said, however, the possibility of doing so is not causing nearly the level of anxiety that the possibility of having another open heart surgery had been causing over the past couple months. As I've said in the past, life is a journey; and it's important to just take it one day at a time.

Great News for the CHD Community!

2011-12-16T15:11:00.000-06:00

Earlier today, the Senate and House passed the budget reconciliation bill, which appropriates $2 million to the Centers for Disease Control and Prevention (CDC) for congenital heart disease surveillance!

Read more by clicking the link below:
http://www.achaheart.org/about-us/news/newsid395/37.aspx

And the FINAL verdict is...

2011-11-30T22:08:00.001-06:00

Tomorrow is a brand new month and a very significant milestone for me. It's the 30th anniversary of my one and only open heart surgery! Below is a copy of the email I sent out to family members and friends this evening. Now that a final decision has been made, it's time to shift the focus of this blog from documenting the play-by-play of this recent journey to a broader focus of generally living a healthy and active life with Tetralogy of Fallot.
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I'm not going to have the surgery!

As you know, the last two and a half months have been like a roller coaster ride I've never experienced before. Tomorrow (December 1, 2011) marks the 30th anniversary of my first (and, so far, only) open heart surgery; and I recently set that date as my own deadline to make a final, final, final decision ... and then to go confidently in that direction, to stop questioning, and to cease the second guessing of everything. I'm tired of being tired, exhausted, scared, and unsure.

This morning, I emailed Dr. Eric Svensson, the ACHD cardiologist at the University of Chicago, from where I got the third opinion (and the second opinion that advised against the surgery) to ask if I could change my mind again and to keep him as my regular cardiologist going forward, as well as to proceed with his recommended less-invasive approach. He replied this evening and said that he would be happy to do so.

After I thought I had made a "final" decision multiple times in each direction over the past few weeks, the truly final verdict came down to (at least) a couple key points:

The majority of the doctors I met with and/or who reviewed my case actually advised against the surgery. While I didn't meet with him directly, this group of individuals included Dr. Michel Ilbawi, who was the first assistant during my surgery 30 years ago. Dr. Ilbawi is now the director of pediatric cardiac surgery in the Department of Cardiovascular-Thoracic Surgery at Rush University Medical Center; and he was part of Rush's comprehensive medical/surgical conference that reviewed my case (for the second opinion) and collectively advised against the surgery.
Dr. Svensson at the U of C, who will be my primary cardiologist going forward, had (in my opinion) the best patient-centered approach of all the doctors I met. While I wasn't at all unhappy with any of the care or evaluations I received from Northwestern or Rush, Dr. Svensson's direct and compassionate approach was unmatched. In addition, he has been very accessible to me and has thoroughly answered and responded in a timely manner to every question and concern that I've raised with him.

Life is uncertain. While there is a very real possibility that I will need another open heart surgery at some point in the future, now is not the time for it. Is it possible that a serious cardiac event could happen to me? Sure! But it's also possible that I'll get hit by a car while walking to the train on my way to work tomorrow morning. While that would certainly be a crappy way to start my 30th anniversary, I won't be losing sleep over it tonight!

Earlier this evening, I sent an email to the doctors at Northwestern informing them that I had changed my mind (again) and that I decided to cancel the second surgery appointment (which I actually just called to schedule earlier this week) and that I would be working with another ACHD cardiologist going forward. Ironically, as I was writing this message, I received a phone call from Dr. de Freitas, the cardiologist at Northwestern, who was working late into the evening and just wanted to follow up on my email. We actually had a very pleasant conversation, as I talked briefly about the crazy journey I've been on since mid-September and how I ultimately came to my final decision. He was very cordial and understanding, and he even told me that it sounded to him like I had made the best decision for myself. He admitted that this comment sounded ironic coming from the person who initially recommended the surgery; but he explained again that in unusual cases like this, it's not uncommon for different doctors to have different opinions. He said that he was confident that I would be getting excellent care and wished me well. Truth be told, I'm actually really glad he called; and I feel like there is now positive closure to our doctor/patient relationship.

Next steps: I will be working with the doctors at the U of C to do the following:

Schedule an appointment to have a stent placed in my narrowed left pulmonary artery, which will be done in a cath lab;
Meet with the electrophysiologist, who will assess for cardiac arrhythmias that might have led to my biking accident this past summer; and
Start preparing for my next distance bicycling event in the summer of 2012!

I cannot thank each and every one of you enough for your love and support during this crazy time. Your prayers, good wishes, kind words, and supportive messages -- whether in person, on the phone, or online -- have meant more to me than you can possibly imagine. I don't think I have been more confident in my recent decision making than I feel right now. Earlier today, when I told myself that this really is my decision, I truly felt like the weight of the world was instantly lifted off of my shoulders. And I took that as a good sign!

From the very bottom of my heart (even though it's still got a leak and an aneurysm in it), thank you!!

-Ken

ACHA Blog: A Cyclist’s Journey

2011-11-29T14:50:00.001-06:00

My first posting for the ACHA blog was published today (two days earlier than expected)! Below is a copy of the entry.
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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.

I have always loved the outdoors, especially bicycling. Over the last few years, I’ve become more of an avid cyclist, having completed multiple distance rides, including centuries and multi-day rides. For me, cycling is the perfect mix of physical endurance and relaxation. While that may sound a bit contradictory, I would bet that most people who ride regularly would agree. It’s hard to describe, but the rush and excitement associated with a distance ride is both physically invigorating and emotionally meditative. For me, the benefits of cycling cannot be replicated elsewhere.

Back in early August, I went for a bike ride after work along Chicago’s lakefront path (a common thing for me to do in the summer), and I later woke up in the ER after falling and having a concussion. Fortunately I was wearing a helmet, and the brain CT scan came back normal. Because the doctors were made aware of my CHD, I was put on a heart monitor while in the hospital and run through the battery of cardiac tests, including an outpatient MRI the following week.

The next month, I had an appointment with the ACHD cardiologist, who reviewed my records and informed me that the MRI found an aneurysm in my main pulmonary artery. During that conversation, he also gave me his preliminary recommendation for open heart surgery.

I, like many adults with a CHD, stopped going for regular checkups when I was in high school. Now it’s hard to know whether or not this aneurysm would have been caught earlier had I been maintaining regular checkups, but that’s a moot point. The last two and a half months have been spent going for a variety of pre-op appointments, seeking multiple opinions and riding an emotional roller coaster.

The second and third opinions I received actually recommended against the open heart surgery. The doctors told me the likelihood of the aneurysm rupturing is incredibly low. Instead, they recommended a much less invasive procedure to put a stent in the left branch of my pulmonary artery, which has been narrowed as a result of the aneurysm pushing up against it. For many reasons—including my paranoia about the unknown and my desire to not be that first documented case of such a rupture—I anticipate that I will actually be having the open heart surgery, rather than the stent procedure, in the coming weeks.

Truthfully, I’m terrified; but I also know I’m in good hands. The surgeon I met with specializes in adults with CHD, and he has a 0% mortality rate. During our consultation, he even said that he fully expects I will be back on the bike within just a few months after surgery. Hearing that gave me a lot of confidence, and I know that cycling will be a big part of my recovery.

I recently read Back to Life After a Heart Crisis by Dr. Marc Wallack and Jamie Colby. In the book, Dr. Wallack talks about his journey to regain his life after having emergency quadruple bypass surgery, and the final step in his 8-step plan is “Train for a Huge Physical Challenge.” He writes, “To fully recover mentally and physically from heart disease, you need to take on that one thing you fear most. Only then will you prove to yourself and others that you are back and better than ever.” I know that I will be back on the bike by spring, and I am already looking for distance rides taking place next summer that I can register for now to keep myself motivated and my recovery on track.

Reconsidering my options (again)!

2011-11-25T18:50:00.000-06:00

If you've been following my blog and feel like you've been riding a roller coaster lately, welcome to my past two months! Even after I thought I made a final decision, I find myself now reconsidering my options. As usual, nothing is definite; but I am, once again, thinking about having the surgery. Even though I have two recommendations against surgery and one for it, my gut is starting to lean back toward having it done as an extreme (but potentially life-saving) preventive measure.

This past week, I received a call from Dr. Atman Shah, the interventional specialist at the University of Chicago, who would be doing the stent implementation. He talked me through the details of the procedure and the associated risks, and he explained that it would be much like the cardiac cath that I had done last month at Northwestern. The difference here is that, rather than just observing the heart, this procedure would place the stent in the narrowed portion of my left pulmonary artery just past the aneurysm. When doing these stent procedures, Dr. Shah explained that there is generally a very low risk (approximately 1 in 1,000) of an injury (or tear) to the artery wall. However, because my case is so unusual given the size of the aneurysm, he estimated that the risk of arterial injury here might be closer to 1 in 100, which is actually greater than the mortality risk associated with the surgery (less than 1%). I then asked him this question: “If there is damage done at or near the site of the aneurysm, what, then, would be the likelihood of my needing immediate surgery?” Because my case is so unusual, I understand why he wasn’t able to give me a definite answer. That said, however, this has added yet another piece to the complex puzzle.

While all the doctors I've met with seem to think that the likelihood of my pulmonary artery rupturing is quite low even with my overall level of activity, the lack of documented data cannot really allow them to determine the likelihood with much certainty. (And I surely don't want to be that first documented case!) Truth be told, I'm rather paranoid about it, especially given the active lifestyle I like to lead. I have even been a bit hesitant to exercise with any degree of intensity since first learning of the aneurysm and getting the recommendation for surgery back in mid-September; and I definitely want to feel comfortable and confident again going on future multi-day bike rides.

Just this morning, I emailed the cardiologists at Northwestern and the University of Chicago to ask for more feedback given my latest concerns. I also inquired about endovascular coiling, a minimally-invasive procedure I recently read about online for treating brain aneurysms. While I have no idea if this would be an option for my cardiac situation, I had to ask.

Stay tuned! I'm sure there will be more exciting adventures ahead, even though I don't yet know what they will be!

December 7, 2011: Just another day in the office

2011-11-15T21:25:00.001-06:00

Two months ago today, I walked into the cardiologist's office at Northwestern for what I expected would be a routine appointment, and I walked out with a recommendation for open heart surgery (OHS). Just about a half hour ago, I called his assistant and left a message telling her that, after seeking a second and third opinion, I have decided to not go forward with the surgery, which had been scheduled for December 7. I think the past two months have been the craziest emotional roller coaster and test of fortitude that I can recall.

After following up with Northwestern to have the last remaining pieces of my medical records (specifically the results of the October 27 heart cath) sent to the University of Chicago, the cardiologist at the U of C emailed me his official recommendation late this afternoon:

The report indicates that the pressures in the pulmonary artery are not significantly elevated, leading [us] to conclude that your risk of rupture of the pulmonary artery is very low. Based on this, we'd recommend (1) proceeding with stent implantation into the left pulmonary artery to attempt to improve flow into the left lung, and (2) an evaluation by our colleagues in electrophysiology to assess for cardiac arrhythmias that might have led to your biking accident last summer.

Ding! Ding! We have a winner!! For those of you that have been following along this journey to any degree, you know that this decision was not made lightly. While I will not be having surgery three weeks from tomorrow, I'm not entirely off the hook, nor will I be for the rest of my life. If nothing else, my biking accident at the beginning of August was a very clear wake up call and a reminder that as a person with a CHD, I need to have lifelong care and monitoring by a cardiologist trained in adult congenital heart defects.

Who knows what procedures I may or may not need down the line? There is a very real possibility that I will need another OHS at some point in the future. But then again, I may not. Life is a journey, and I plan to continue living it one day at a time. From now on, though, I'll just be sure to have the proper medical care and monitoring come along for the ride!

Follow-up from Rush (Opinion #2)

2011-11-15T09:28:00.000-06:00

This past weekend, I received an email from Dr. Hijazi at Rush, who informed me that my case was going to be discussed at their comprehensive medical/surgical conference today. Dr. Hijazi just called me this morning to let me know about the conversation that took place. Their recommendation remains the same as when I met him in his office last month: no surgery; instead, put a stent in the left pulmonary artery (LPA). Doing this will help to even out the distribution of blood between my lungs and very likely reduce the pressure on the pulmonary valve (PV), which has been leaking my entire life.

Cool Fact: Dr. Hijazi also informed me that Dr. Michel Ilbawi, who was the first assistant during my surgery 30 years ago, was a part of this morning's conference and weighed in on Rush's collective opinion. Dr. Ilbawi is now the director of pediatric cardiac surgery in the Department of Cardiovascular-Thoracic Surgery at Rush.

Third Opinion = A New Direction?

2011-11-09T22:25:00.000-06:00

Yesterday morning, my parents and I went to meet with Dr. Eric C. Svensson at the University of Chicago Medical Center to get a third opinion. After the confusion I faced following the second opinion, I went into yesterday's appointment with absolutely no expectations one way or another. I figured I would just go with the flow and see what he said.

Dr. Peter Varga joined Dr. Svensson shortly after the consultation began. Dr. Varga and Dr. Svensson are, respectively, the medical director and the medical co-director of the University of Chicago's Center for Adults with Congenital Heart Disease. During our conversation, it became clear that these two gentlemen agreed with Dr. Ziyad M. Hijazi from Rush University Medical Center, who, during my appointment for the second opinion, recommended against the surgery.

Prior to yesterday's appointment, I had another phone conversation with Dr. R. Andrew de Freitas from Northwestern, who called to discuss the results of my recent lung scan and heart cath procedures. He confirmed what the other doctors told me about the heart cath, which was definitely a good thing. Regarding the lung scan, he told me that the most significant finding (and one of the main reasons for having the test done in the first place) was the percentage of blood going to each lung. While the ideal distribution is 50/50, he told me that it's not uncommon for the distribution to be more along the lines of 45% to the left lung and 55% to the right lung. My lung scan showed that the blood distribution is approximately 20% to the left lung and 80% to the right lung!

Fortunately, Dr. Svensson and Dr. Varga received this test result prior to yesterday's appointment. (Some of my other medical records, for some reason, never made it to the University of Chicago. Before I left, Dr. Svensson's nurse had me sign the release paperwork so that she could follow up and re-request the rest of my records from both Children's Memorial Hospital and Northwestern Memorial Hospital.) Just like Dr. Hijazi (Rush) had said previously, Dr. Svensson and Dr. Varga recommended having a stent inserted into the narrowed left branch of my pulmonary artery, which should correct the balance of blood distribution to the lungs.

One of the things that I've found the most interesting (confusing?) is the fact the primary concern of the doctors at Northwestern (the aneurysm in my pulmonary artery) seemed to be the least of the concerns of the doctors at both Rush and the University of Chicago. When I followed up with Dr. Svensson via email regarding this discrepancy, he -- like Dr. de Freitas (Northwestern) -- said that there isn't much data regarding the risk of rupture of the pulmonary artery. However, he added that

"it is almost unheard of for the pulmonary artery to rupture except in a few rare disorders (not Tetralogy of Fallot). Also, we never seen pulmonary artery patches 'wearing out' over time - after surgery they form really tough scar tissue that just doesn't fail. Given this, it's our opinion that the risk of surgery, despite being very low (probably <1%), is still higher than the risk of rupture, so we would not recommend it. The only caveat here is I need to see the Cath report details to know exactly what your pulmonary artery pressure is. I'm assuming its relatively normal, but just want to make sure."

The cath report is clearly one of the missing pieces of data that is being requested again by Dr. Svensson's nurse. Dr. Svensson expects to be able to follow up with me early next week after he's had a chance to review both the cath report from Northwestern and the original op report (from 1981) from Children's Memorial.

While I have yet to make a final decision about my immediate next steps, there is a very good possibility that -- based on this information I received from the doctors at the University of Chicago -- I will actually not be going to Northwestern for the surgery that is currently scheduled for four weeks from today. However, because nothing is definite at this point, I have not yet canceled anything at Northwestern.

On one hand, knowing that there is a very real likelihood that I will not need to be having a major surgery at this point is a huge relief. On the other hand, it's all still very confusing and overwhelming. As I was telling my family members and a couple friends, the whole idea of surgery has been on my mind every single day -- in one form or another -- since the initial recommendation came in mid-September. Physically, I have been feeling fine. Mentally and emotionally, however, I am beyond exhausted. Within just the last month alone, I went from meeting with the surgeon at Northwestern and beginning to prepare myself mentally for this major procedure, to being thoroughly confused and unsure of what would be next after getting the second opinion, to going back to thinking that the surgery was still the better option, to (just as of yesterday) going back to grasping the very real and legitimate possibility of choosing to not have the surgery at this time.

At this very moment, I think I know what I'm going to do (or not do) in the immediate future. But then again, I've said that before. The jury is still out.

1st Round of Pre-Op Appointments Complete!

2011-10-27T22:15:00.000-05:00

As you know, I've already received a second opinion and have an appointment for a third opinion scheduled in early November. So I now have pieces of my medical records disbursed at multiple hospitals across the city. However, for the sake of ease and consistency (as well as my high level of satisfaction with my experiences there), I've decided to keep Northwestern as my "home base" and to have all of the procedures and tests done there. This also makes sense since this is where the surgery will be taking place. At this point, I'm about 90% sure that I will be going through with the surgery; but I will make my final decision after receiving the third opinion. In the meantime, I've decided to keep all of my pre-op appointments. On the very off chance that I decide to postpone the surgery, then at least I've added a lot of important information to my cardiac medical records over the past few weeks.

This week consisted of two pretty significant pre-op appointments. On Monday (October 24, 2011), I had a chest x-ray and a pulmonary ventilation/perfusion scan. This scan is actually two separate tests. As described by the National Institutes of Health, "the ventilation scan is used to see how well air and blood flow moves through the lungs. The perfusion scan measures the blood supply through the lungs." I still need to follow up with the cardiologist to get the results.

Today was the appointment for my cardiac catheterization (angiogram). While it wasn't the most pleasant experience (But what hospital procedure is?), I do think that the anticipation was worse than the reality. The procedure itself lasted a little over an hour, but it was pretty-much an all-day hospital visit. I arrived at Northwestern at 6:30 this morning (thanks to the very generous door-to-door service from my parents). After all of the prepping was done, the procedure started a little after 8:30am and was followed by four hours of bed rest (required while the puncture site was healing). My dad graciously kept me company throughout the entire day, and my mom came back to the hospital after her own doctor's appointment. I think I watched more television today that I have in the past month!

All in all, it was a good day. Aside from the pulmonary aneurysm (which we already knew about), the angiogram showed nothing abnormal; and it confirmed that all of my heart's arteries are open and functioning well! The puncture site appears to be healing as it should, and both the nurse and doctor were pleased with what they saw before I was released, which happened just after 4:00pm.

A Celebration of Gratitude

2011-10-24T22:08:00.000-05:00

This weekend, I had the honor of singing in the first concert of the Sing to Live Community Chorus's 7th season! I've been singing with this choir since it first started in 2005, and I have made some wonderful friends through the group. Sing to Live was founded by Melinda Pollack-Harris to bring the joy of singing and the gift of music to those whose lives have been touched by breast cancer. Music has been an important part of my own life since I had my very first piano lesson at the age of seven. I've sung in a few different choirs since college, and I have always believed in the healing power of music.

Now that I am in the midst of my own big journey, I had the opportunity to rediscover the real importance of music in my life. The theme of this concert -- A Celebration of Gratitude -- focused on being thankful for the gifts we have in our lives. The timing for me personally could not have been more appropriate. Since I started sharing the latest news about my heart issues with my family and friends, I have been receiving an incredible amount of support through one-on-one conversations, phone calls, emails, texts, and Facebook messages. Being able to share this concert with my choir friends (as well as a number of my family members who were in the audience) made for my own personal celebration of gratitude.

As I've said before, I believe that things happen for a reason. During this concert, I had the privilege of singing the solo in Greg Gilpin's song, The Gifts You've Given to My Life:

Sometimes "yes," more times "no," you showed me wrong from right.
Always patient with a tender smile every time that I asked "why?".
You showed me there is beauty if I only choose to see.
And life is full of choices, and the choice is up to me.

I wonder if you realize what all you've given me.
You've made such a difference in who I've come to be.

To all of my family members and friends who have been there -- and continue to be there -- for me every step of the way, I do hope you realize what you have given to me. I am able to maintain the positive attitude I have about this journey in large part because of your presence in my life. From the bottom of my heart (no pun intended), thank you. I love you all dearly!

Second Opinion = Confusion!

2011-10-23T17:26:00.000-05:00

Last Wednesday (October 19, 2011), I met with Dr. Hijazi at Rush University Medical Center to get a second opinion. What I expected to be a fairly straightforward visit and confirmation of the recommendation for surgery that I received from Northwestern ended up leaving me more confused than anything. In short, Dr. Hijazi told me that he wanted to see more data before he would make any recommendations going forward, specifically the results of a cardiac catheterization and a lung perfusion scan. (Both of these tests are already scheduled at Northwestern as part of my pre-op appointments.) While Dr. Hijazi did say that some intervention would be necessary, he believed that surgery would not be among his recommendations. Because of the low blood pressure through the pulmonary artery, he is not worried about it rupturing due to the aneurysm. Further, he said that a stent could be inserted (via a heart cath, as opposed to open heart surgery) to open up the stenosis of the pulmonary artery's left branch.

The next 24 hours were filled with confusion, uncertainty, and -- quite honestly -- a bit of fear. After having been mentally preparing myself for a major surgery since I was first given that recommendation in mid-September, I was now told that it may not even be necessary. After talking about it with my family, I decided to do two things: (1) schedule an appointment for a third opinion (this time at the Center for Adults with Congenital Heart Disease at the University of Chicago Medical Center) and (2) follow up with the cardiologist at Northwestern who gave me the initial recommendation for surgery. I now have an appointment in early November to meet with Dr. Eric C. Svensson, the medical co-director of the Center, to get a third opinion.

The next day, Dr. de Freitas (the cardiologist at Northwestern) returned my phone call. I told him that after meeting with him and the surgeon there, I decided to get a second opinion for my own piece of mine. I explained Dr. Hijazi's conflicting recommendation and asked for some more insight to help make some more sense out of everything. I was, once again, very pleased and impressed with my interaction with Dr. de Freitas.

He explained that he agreed with about 95% of the other doctor's recommendation. He said that, in most cases, he wouldn't be as concerned about the aneurysm (again because of the low blood pressure in that area of the heart) and would choose just to monitor it, as opposed to recommending surgery. The difference with me is that I've already had heart surgery and there is a patch on that pulmonary artery. What he doesn't know (due to the lack of similar medical case studies) is the strength of that patch in the midst of the aneurysm and the likelihood of possible rupturing of the artery. He explained that his recommendation for surgery is based on his preference for taking a calculated risk now (having the surgery in a very controlled environment) in an attempt to prevent a possibly serious (and potentially an emergency) situation down the line.

Dr. de Freitas told me that he was pleased to hear that I sought out a second opinion and that I was taking the time to ask all the right questions. He patiently and thoroughly explained his point of view, but he made it clear that, as the patient, I am in the driver's seat. He said that -- technically -- this would be an elective surgery, and that the decision to go through with it (or not) is entirely up to me. While his recommendation was clear, he told me that I wouldn't be "fired as a patient" if I chose to not have the surgery and that he would be happy to remain as my cardiologist if I wanted.

For those of you who know me personally, I often have trouble making decisions about where to go to dinner when I'm out with my friends. Now I have to make the decision to "voluntarily" have an elective open heart surgery?! On one hand, the idea of walking into a hospital for such a major surgery while feeling perfectly healthy and normal (and knowing there will be a significant period of recovery required) seems ridiculous. On the other hand, now knowing the facts, I'm not sure I'm comfortable going about my day to day activities longer term (and continuing to have an active lifestyle) while always being concerned about the situation and wondering "what if" or when.

I think I know what my decision is, but I'm still planning to go for that third opinion at the University of Chicago. The surgery and all of the required pre-op appointments are still on the schedule at Northwestern. If necessary, however, a single phone call can change that.

T Minus 50 Days

2011-10-18T22:01:00.000-05:00

In 50 days, I will walk into Northwestern Memorial Hospital for my second open heart surgery. Given that my first surgery took place when I was only eight months old--on December 1, 1981: almost 30 years to the day before this upcoming surgery--this feels like brand new territory for me. (I wonder if anyone in my family is experiencing deja vu.) While I certainly wouldn't say that I'm looking forward to the upcoming procedure, it has been an enlightening and educational journey. I mentioned in an earlier posting that I knew I would not be going through this alone, and the overwhelming amount of positive feedback and support that I received in response to the email I sent out last week is very clear evidence of that fact.

I am incredibly fortunate to have such a strong support network, not only among my family members and friends, but also among my work colleagues and the medical professionals with whom I have been interacting. I can honestly describe my experience to date with the doctors, nurses, and other staff at Northwestern's Bluhm Cardiovascular Institute in two words: pure professionalism! Their direct, sincere, and patient-centered approach has allowed me to gain the confidence I need before undergoing such a major procedure. In addition, my genuinely inquisitive nature has caused me to do a fair amount of my own research along the way and has enabled me to have more intelligent conversations with the medical team. This has resulted in me having a better understanding of--and more control over--my own health!

I have no misconceptions that the upcoming journey will be easy, and I have already started taking some steps to help prepare myself for the physical, mental, and emotional challenges that lie ahead (both before and after the surgery). I have identified three (for now) primary methods of coping, processing, relaxing, and recovering: (1) reading: both for pure pleasure and for information; (2) playing music: primarily trying to get back some of my chops on the piano; and (3) exercising: with a focus on yoga and light cardio work.

Life is a journey, and in the words of Tony Horton: Bring it!

Top 10 Reasons to Date a CHD Survivor

2011-10-18T09:45:00.001-05:00

I wanted to take this opportunity to share a link to today's ACHA blog post. I may just have to use some of her suggestons in my own dating life! :)

Top 10 Reasons to Date a Congenital Heart Defect Survivor
by Stephanie Romer

I think #7 may be my personal favorite: You have a built-in excuse to check out our smokin’ hot torsos. I guess that means I'll have to get back into working out after my recovery!

It's all about perspective. Attitude is everything!

2011-10-12T22:48:00.003-05:00

Below is a copy of the email I sent out to family members and friends earlier tonight announcing the scheduled surgery date (December 7, 2011), as well as sharing my belief in the importance of keeping a positive attitude!
_________________________

Dear family and friends,

As most of you know, I got the news just about four weeks ago that I would probably need to have another open heart surgery in the coming months to address an aneurysm in my pulmonary artery. This was discovered by the cardiac MRI that I had done shortly after my bicycling accident in early August. (They say things happen for a reason. I guess I now know why that freak bicycling accident happened after all.) Since I got this surprising news, I’ve had some great conversations and have experienced a truly overwhelming amount of support and encouragement from family members, friends, colleagues (including my boss!), doctors, and staff and volunteers at the Adult Congenital Heart Association (ACHA): http://www.achaheart.org/.

ACHA is a great organization that I found online while doing some research on congenital heart defect surgeries and patient care. (I even borrowed their logo as my Facebook profile photo for right now.) ACHA is a national not-for-profit organization dedicated to improving the quality of life and extending the lives of adults with congenital heart defects (CHD). I’ve already been paired up with a volunteer through the organization’s Heart to Heart Ambassador program; and Russell, my ambassador, has been a great peer and mentor resource for me. Not only do we share the same CHD (Tetralogy of Fallot), we are both avid bicyclists who were “reintroduced” to our condition after having another incident while bicycling as an adult.

All that said, I now have a date! I wish I could say that my date was tall, dark, and handsome and would be taking me out for dinner next week. But the date I’m referring to is for the surgery. Eight weeks from today (on December 7, 2011), I will be having the surgery at Northwestern Memorial Hospital. The team that I have been interacting with thus far has been nothing short of fantastic, from the nursing staff to the cardiologist and surgeon. I know that I’m in very good hands, and the doctors are fully expecting me to be back to bicycling and my other normal activities in no time after the recovery.

I will admit, however, that the phone call I received yesterday confirming the surgery date did catch me a little off guard. Even though I was expecting the call and knew it was coming, putting “Surgery” on my calendar -- and then blocking off the next six weeks as “Medical Leave” -- can definitely take its toll. As my boss said, I had been processing everything intellectually so far; but processing things emotionally is much different. I went ahead and took a few minutes to go for a walk, to call my family and share the update with them, and to start processing the reality that a date for surgery was now confirmed. Truth be told, it was all a bit overwhelming.

Even though I now have the surgery date scheduled, I still have an appointment at Rush University Medical Center next week for a second opinion. While I fully expect that the cardiologist there will agree with the recommendation for surgery, I still want to hear another medical professional say so before I go under the knife. On the off chance that he doesn’t agree, I think I will be more confused than anything (but I’ll address that if and when it happens).

As the subject of this email says, attitude is everything! I really believe that. Am I scared? Sure! I expect any sane person would be. But I am also extremely grateful for the opportunity to be able to process the news, get the advice and opinions I need, and proceed in an educated and logical manner. Not everyone has this opportunity, so I’m already ahead of the game. And as I told a friend of mine earlier today, I plan to continue laughing and joking all the way to the operating room!

To those of you who have offered support and words of encouragement (and you know who you are), please know that I am immensely grateful! Even though I know that I am the one going under the knife, I am well aware of the fact that I am NOT going through this alone; and that fact, in and of itself, is SO important to me. To those of you who I haven’t had the chance to talk with about this yet, please know that it’s not personal. You’re receiving this email now because I consider you an important part of my life, and I wanted to share this news with you. In today’s technological world, sometimes email can be the easiest and most convenient way to “go public” about something.

Speaking of going public, if you’re interested in reading more about my journey and you haven’t had a chance to check out the blog I created, I encourage you to do so: Ken of Hearts (http://kenofhearts.blogspot.com/). I also invite you to stay tuned to it as I fully intend to keep posting for the foreseeable future (well, aside from the days immediately following the surgery). But, as always, I’m happy to hear from you by phone or email, too.

Thank you for being you and helping me to be me!

Warmly and with gratitude,
Ken

Seeking a Second Opinion

2011-10-10T23:00:00.000-05:00

As pleased as I have been with the doctors and nurses at Northwestern, I knew that it was still important to get a second opinion on the recommended surgery before going under the knife. When I mentioned this plan to Dr. Russell during my appointment last week, he was very supportive of it and said that he encourages his patients to seek second opinions before making a final decision.

At the strong recommendation of folks from the Adult Congenital Heart Association, I used the ACHD Clinic Directory to find another cardiologist and clinic specializing in adult congenital heart disease/defects. Because adults with CHDs have such unique circumstances, it's important to find cardiologists who specialize in this area. I now have an appointment next week to meet with Dr. Ziyad M. Hijazi, the medical director of the Center for Congenital and Structural Heart Disease at Rush University Medical Center. I fully expect that he will agree with the recommendation for surgery, but I do want to hear it from one more medical expert before I go through with it.

The Surgeon's Report

2011-10-10T22:32:00.001-05:00

Last Thursday (October 6, 2011), my parents and I went to meet with Dr. Hyde Russell, the surgical director for the Program for Adult Congenital Heart Disease at Northwestern. Assuming I go forward with the procedure at Northwestern (which I fully expect I will be doing), he is the person who will be performing the surgery. I was very pleased with the meeting, and I feel that he answered all my questions candidly and completely. He also allowed me to audio record the whole conversation, so I'll be able to retain that for future reference.

In brief summary, the six to seven hour surgery will consist of two major components:

Removing the aneurysmal tissue in my pulmonary artery and re-patching the artery. A Gore-Tex patch will be used, and he expects it will safely last for the rest of my natural life. (That said, he was very impressed with the durability and longevity of the original pericardium patch that was put on during my first surgery 30 years ago.) This procedure will fix the aneurysm, as well as the narrowing of the one branch of the pulmonary artery. Currently, the aneurysm is pushing up against this branch, causing it to be narrowed.
Replacing the pulmonary valve with a cow (pericardium) valve. Even though this valve may have to be replaced in 15 to 20 years, that procedure can be done through a heart cath, as opposed to another surgery. (He doesn't want to replace the valve with a mechanical one, which would require me to be on Coumadin. So I'm a fan of that decision!)

Although Northwestern only does about 40 to 50 heart surgeries annually on adults with congenial heart defects (After all, the pool isn't all that big to begin with.), they do a total of about 1,000 open heart surgeries each year. Dr. Russell personally does over 200 open heart surgeries per year (between Northwestern and Children's Memorial), and the procedure that I need to have done is -- in his world, at least -- very common and straightforward. He has a 0% mortality rate post-surgery (which I truly appreciated hearing). Post-op infection rates over the life of the patient range between 2% and 5%.

He fully expects that my surgery and recovery will go smoothly and that I will be back to cycling and my regular activities in no time. Prior to this appointment, my cardiologist -- Dr. de Freitas -- told him that I was a pretty avid cyclist. When Dr. Russell asked what was the greatest distance I had ridden, I smiled when I told him about the 7-day, 565-mile ride last year in California (with the longest single day of riding being 107 miles). His jaw nearly dropped when he heard this, so he was quite impressed with that fact.

Next steps: I have a dentist appointment later this week to get the dental clearance I need before having the surgery. This is done to ensure that no oral infections are present, which could potentially spread to the new valve. Once I have that done, I plan to schedule the surgery at Northwestern later this fall. I already have a call in to the surgeon's nurse, who is checking calendars for available dates during the first full week of December.

Meeting the Surgeon

2011-10-05T22:27:00.002-05:00

Tomorrow afternoon, I'll be meeting with the cardiac surgeon at Northwestern for the first time. My parents will be going to the appointment with me, and I plan to ask the doctor for permission to audio record the conversation so that I can be sure to keep track of everything that we discuss. Since I first got the news almost three weeks ago about needing this surgery, I've started compiling a list of questions to ask the cardiologist and/or the surgeon before going through with the procedure.

Here is the list of questions that I've come up with so far. This is not meant to serve as a comprehensive list for others in a similar situation, nor will these necessarily be the only things that get discussed tomorrow:

What are the details of the procedure that will be done?
How long is the surgery itself expected to last?
What is the expected time line for everything (surgery, hospital stay, recovery, and rehab)? The cardiologist initially suggested the following time line. Would you concur?

Hospital stay: 4 to 8 days
Recovery: 6 weeks (including hospitalization)
Cardiac rehab: 6 to 10 weeks

What types of anesthesia will I be given? What are the expected after-effects?
How likely is the need for a future surgery (in 10, 15, 20, 25, or more years)?
How many of these surgeries have you performed? What is your mortality rate? What is your post-surgery infection rate?
What are the immediate and long-term risks if I don’t have the surgery?
Will I need to be on any anti-rejection drugs (or immunosuppressants) after the surgery?
Will I need to be on any other types of medication (long- or short-term) after the surgery?
What are the dietary and physical restrictions during the recovery and rehab (short term)?

When can I consume wine or other alcohol again?
When can I resume bicycling or other similar physical activities?

What are the dietary and physical restrictions after recovery and rehab (long term)?

Will any of my regular activities have to be reduced or eliminated?

A friend of mine said she recently read that some heart surgery patients have found singing to be very therapeutic, whether in an organized setting or just on their own (and regardless of whether or not they've ever sung before). What are your thoughts on singing--or music in general--as a type of post-surgery therapy?

I'm coming out. I want the world to know.

2011-10-01T16:10:00.001-05:00

It has been just over two weeks since I met with my new cardiologist for the very first time and was told that I would probably need to have another open heart surgery in the coming months. While (fortunately) it's not an emergency, it is a serious matter that needs to be addressed. I spent most of that evening in shock while processing the news and telling my parents and sisters, all of whom remembered my first heart surgery nearly 30 years ago. (I was only eight months old at the time, so I clearly have no recollection of that surgery.)

In the day that followed, I took a lot of time to think about and process the news I had just received, did some of my own research and reading online, and selectively told some of my closest friends about the situation. I am incredibly lucky to have an amazing network of family and friends, who all provided words of support and encouragement and offered to help in anyway they could. One of my friends told me about her cousin, who, when he was in his early 30s, had been diagnosed with a very rare type of cancer. He chose to start a blog about his own journey through the treatment and recovery process; and this story was also part of the impetus for the creation of this blog.

As I reflect on the past two weeks and the process of sharing this big news with family and friends, I can't help but comparing it to the process I went through over a decade ago when I came out of the closet as a gay man. While I think more people were surprised to hear this more recent news about the upcoming surgery, I found myself going through a similar set of steps:

Come out to yourself. Deal with the anger, confusion, and questions along the way; but accept and embrace the reality for yourself first.
Share the news with close family and friends. Tell the people closest to you. Get their acceptance, support, and feedback. Then determine how to move forward together.
Live openly. While it's not necessary to plaster the news on a billboard or to work the news into every introduction you have with people, just go about living your life day to day. If the topic comes up, discuss it. If it doesn't, don't worry about.

While I completely understand why not everyone can (or maybe doesn't want to) "come out" in this manner (regardless of what type of news they have to share), this was simply the approach that I chose for myself. I decided to make this blog public as a way of sharing my personal story more widely. If people have the opportunity to read about and understand the personal stories of adults with congenital heart defects, perhaps that increased knowledge can help with the advocacy efforts of organizations like the Adult Congenital Heart Association.That is my hope.

It's Basically Official

2011-09-30T19:48:00.003-05:00

I received a phone call last evening from my cardiologist informing me that he had met with the surgeon, who agreed with the recommendation that I proceed with the surgery to address the pulmonary artery aneurysm. In all honesty, the call was no surprise, and I had been mentally preparing myself since the initial visit to the cardiologist two weeks ago. I was on the phone with him for over 40 minutes, as he patiently and calmly talked me through the next steps, some of the details about what he and the surgeon discussed, and answered every last question I had (including many that I know I asked him when we met the first time). While I'm not necessarily looking forward to the surgery, I am grateful that this issue was discovered now before it turned into an emergency situation at a future date. Because I hadn't continued with regular cardiology visits since approximately 2001, there's a lapse in my medical records; and as a result, it's difficult to determine whether the enlarged artery is something I've had for an extended period of time or if it developed in recent history.

Just this morning, I was able to get my next two appointments scheduled: the pre-op consultation with the surgeron and a cardiac catheterization (or heart cath).

Pre-Op Consultation
Next week, I will be meeting with Dr. Hyde Russell, the surgeon who (assuming I decide to go forward with it at Northwestern) will actually be performing the surgery. He and Dr. R. Andrew de Freitas (the cardiologist) regularly work closely together, both split their time between Northwestern and Children's Memorial Hospital, and both have extensive experience with both pediatric and adult congenital heart patients. If Dr. Russell is anything like Dr. de Freitas has been in terms of his approach to working with patients, I will be very pleased and grateful!

At the appointment, the doctor will go into more detail about the proposed procedure, the overall process, and the recovery and rehab periods; and he will answer whatever questions I have. (Hopefully he's patient, as I already have a growing list of questions to bring with me.) I will also be bringing a family member or two with me just so that other people are hearing all the details, and I intend to request permission to audio record our discussion so that I can be sure I'm capturing all the details that are discussed.

Cardiac Catheterization
Near the end of October, I will be returning to Northwestern for a cardiac catheterization. The heart cath is typically an all-day, outpatient appointment. The procedure can be done for a variety of reasons. Mine is being done specifically to get a better assessment of my heart's hemodynamics (or blood movement). While the MRI that I had done last month was able to provide excellent images of the heart, the catheterization is being done to get a better measure of the blood pressure within the heart and oxygen in the blood. The results will help to decide which additional procedures should be done during the surgery.

In addition to detecting the pulmonary artery aneurysm (the primary reason for the recommended surgery), the MRI and the other tests that I had done provided additional details about four other issues present in my heart:

pulmonary valve insufficiency,
pulmonary valve stenosis,
pulmonary artery stenosis of central branch, and
NVST (nonsustained ventricular tachycardia).

In my case, the cardiologist informed me that none of these additional diagnoses would warrant heart surgery in and of themselves. However, since the surgery is already being recommended for the pulmonary artery aneurysm, the doctors want to determine if it makes sense to correct any of these other problems during the same procedure since they would already be in there. The heart cath will help the doctors assess the situation and guide their recommendations in this area.

Things Happen for a Reason

2011-09-24T13:59:00.000-05:00

I was raised Catholic, but I have been nonreligious since college and consider myself agnostic today. That said, however, I've long believed that things happen for a reason. Even though we may not always understand those reasons (and the phrase itself may sound trite and cliched), I still think that it's true. I've had a few key examples from my own life (some in very recent history) that have supported this belief:

I quit my first "real" job after college because of incompetent and disrespectful management at the agency. I then took a long-term temp assignment that turned into a rewarding full-time job four months later with a salary significantly higher than I was making before.
I got laid off from my last job -- in what was another less-than-ideal work environment -- in May 2010 on the heels of completing my master's degree. I then had the most incredible summer that included a seven-day bike ride in California with my sister and that allowed time for me to relax and "detox" from the stress of grad school and an unhealthy job situation. Three and a half months later, I was hired by a world class organization. I now have a great boss and support system there.
I went for a bike ride one day after work in early August, which ended in an accident, concussion, a visit to the ER, and a two-night stay at Northwestern Memorial Hospital. Through the tests conducted while I was in the hospital and the follow up MRI, it was discovered that I will probably need another heart surgery in the coming months.

I considered naming this blog How Bicycling Saved My Life, but it sounded a bit too over the top and dramatic. However, it may not be that far from the truth. One of the main reasons for all of the extra testing that I had during and after my stay in the hospital was because of my tetralogy of Fallot. When the attending physician discovered the sudden arrhythmia while I was still in the hospital, it sparked the question of whether or not an arrhythmia was the cause of my bicycling accident. After reviewing all of the test results, both the cardiologist and the electrophysiologist were in agreement that the arrhythmia very likely did NOT cause the accident. Thus, it really seems that it was only a coincidence that my enlarged pulmonary artery (discovered during the cardiac MRI) was detected because my bicycling accent landed me in the hospital.

Like I said, I believe things happen for a reason! I don't pretend to know how or why they happen. But I believe that my bike accident happened so that this issue could be detected and addressed before it became an emergency situation. While I would have preferred a less dramatic way of getting the news, I am grateful nonetheless!

4D Heart Imaging: Update

2011-09-22T11:27:00.002-05:00

I just got a phone call from Northwestern this morning letting me know that the technology used by the 4D MRI needs to be developed a bit further before it is used on a patient with an existing/known chest condition. The woman informed me that it should be ready within the next five to six weeks. I may or may not have a surgery scheduled by then, so this follow up MRI may or may not happen. We'll see!

4D Heart Imaging

2011-09-21T23:24:00.002-05:00

Shortly after I was released from Northwestern following my bicycling accident, I had a cardiac MRI scheduled in order to get more detailed images of my heart than they were able to obtain through an electrocardiogram (ECG) or an echocardiogram. About a week after that appointment (and before I had heard the results), I got a phone call from a woman at Northwestern informing me that, based on the results of my MRI, I was an ideal candidate for a research study that the hospital was conducting on 4D heart imaging. Essentially, I would just have to go in for another MRI, but this time it would be done on a more advanced machine. (Click here to read an article about the doctor who is leading this research at Northwestern.) While I didn't really appreciate getting a phone call inviting me to be a part of this research study before I had a chance to learn the results of my initial MRI, I later got confirmation from the cardiologist that it would be beneficial for me to go through it it. Furthermore, doing so would provide him with even more detailed images of my heart and allow for a more complete picture of the situation. At this point, with a preliminary recommendation for surgery on the table, I say, let's get all the information we can possibly get! While I'm not especially looking forward to laying in another MRI machine and having another blood draw (I tend to be a fainter at times.), I think it's worth it in the long run. Plus, since Northwestern contacted me to participate in the study, I'm not being billed for it (nor will my insurance be billed). Rather, I'm actually getting paid $50 to participate. So I guess, in a way, everyone wins. This 4D MRI has not yet been scheduled, but I expect it will take place in the next couple weeks.

Impetus

2011-09-19T22:48:00.010-05:00

This past Thursday (September 15, 2011), I walked into the cardiologist's office at the Bluhm Cardiovascular Institute of Northwestern Memorial Hospital, fully expecting this visit to be like so many I'd had before. But this one would be different and would be the impetus for the creation of this blog.

In early August, I went for a bike ride along Chicago's lakefront path after work (a common thing for me to do in the summer), and I later woke up in the ER at Northwestern, completely unaware of what had happened. The doctors and police officers who were there told me that I had been in a bicycling accident. According to reports from witnesses, it looked like I swerved to avoid hitting someone or something on the path and then just fell. (I have no reason whatsoever to think that I was attacked or that there was any foul play involved.) As it turns out, I had a concussion and (likely) a seizure just after falling; but I have no recollection of the accident. Aside from a small scratch on my left hand and one on my left elbow, I had no physical signs of any injury: no broken bones, no major cuts or gashes, and no major pain. I later discovered that my bike helmet was cracked in about four places, clearly explaining the concussion.

Because of my preexisting heart condition (which very well may have been conveyed to the emergency responders thanks to my Road ID), I was put on a heart monitor while I was in the hospital. Thankfully, all of my tests had come back normal, and the necessary period of observation had passed after I spent the night there. The attending physician was preparing to discharge me the next day; but in the final moments of printing out my release paperwork, she discovered an arrhythmia that hadn't shown up during the rest of my visit. Long story short: I wasn't getting released that day!

This past Thursday's appointment with the cardiologist was a follow up visit that was scheduled while I was still in the hospital in early August. The doctor would review not only the results of all the tests administered in the hospital, he would also review the information collected from the heart event monitor that I wore for a month following my release from Northwestern. What I expected would be a brief visit with the cardiologist mirroring those that I had growing up turned out to include a preliminary recommendation for another open heart surgery to address a pulmonary artery aneurysm!

During my visit, the cardiologist, Dr. R. Andrew de Freitas, took a great deal of time and care to talk with me about my overall health and activity level, to interpret the results of my various tests in great detail, and to clearly explain why he believes a surgery is necessary in the coming months. At this point, however, nothing is definite. The doctor is meeting with the surgical team in the coming weeks; and they will schedule another follow up appointment with me in mid-October, at which time they will present to me their joint recommendation, presumably to proceed with the surgery in the near future.

I've created this blog for three distinct audiences and for three distinct purposes:

For myself: to document this upcoming journey, both for the immediate therapeutic benefits and the longer term archival purposes;
For my family and friends (I am very fortunate to have such an incredible support network!): to keep everyone as up-to-date as possible with all the details; and
For the public (eventually): to provide others with a glimpse into the life of someone who is living a healthy adult life with a congenital heart defect.

Regardless of which category you fall into, I welcome you to this journey!

Introduction

2011-09-19T22:19:00.006-05:00

Welcome! For those of you who haven't met me and don't know me personally, allow me to introduce myself. My name is Ken Woodhouse. I am 30 years old, and I was born with a congenital heart defect known as tetralogy of Fallot. In December 1981 (at the age of eight months), I had open heart surgery to repair this defect. While the surgery addressed the four problems associated with tetralogy of Fallot, a leaking heart valve was not replaced at that time. Had the doctors replaced that valve when I was an infant, they would have had to continually replace it every few years as I grew up. The decision was made to allow the small leak to remain (something I could live with) and to just monitor it closely through regular check ups.

I remember, as a kid, the annual visits to Children's Memorial Hospital, where my surgery was done when I was a baby. Every year, the feedback was generally the same: everything still looks good, but we suggest you lose some weight. I was a chubby kid, and the doctors were concerned that the extra weight could cause additional heart problems down the road. From the end of my freshman year in high school to the very beginning of my sophomore year, I had my adolescent growth spurt and lost about 40 pounds. (I guess I finally took care of that weight thing.) I have been slender ever since.

With no physical restrictions (aside from football) growing up, I often liked to be active. Although I never really gravitated toward organized sports, I always enjoyed being active, especially outdoors. I've loved bicycling for as long as I can remember; and over the past few years, I've done a number of distance rides, including the Ride for AIDS Chicago twice, AIDS/LifeCycle, and the Door County Century. Not bad for someone who -- had he been born just ten years earlier with the same heart defect -- may not have lived to adulthood!