Thursday, December 19, 2013

All I want for Christmas is a new pulmonary valve

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

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

The next step was to schedule a consultation with the surgeon. Can you say deja vu? (However, unlike two years ago, I've decided this time to wait until I was sure about my final decision before blogging about it.)

On December 6, I went to the University of Chicago Medical Center for a consultation with Dr. Gerhard Ziemer, a world-renowned heart surgeon who has performed more than 4,000 congenital heart surgeries. While his primary focus is on children with congenital heart defects, he also serves as the director of the hospital's Adult Congenital Heart Surgery program. During the meeting, Dr. Ziemer said that, based on the results of my recent heart tests, he was actually surprised at my cardiac ability, specifically my endurance for cycling and running. He feels confident that I will be even stronger and able to cycle and run farther post-surgery and recovery.

Just this morning (after getting the obligatory second opinion yesterday and asking a countless number of questions along the way) it became truly official. Three weeks from today—on January 9, 2014—I will be having my second open heart surgery (OHS) to replace my pulmonary valve. (You may recall that my only other OHS was back in 1981 when I was just eight months old.)

Dr. Ziemer specializes in homograft valves, and it was confirmed at my consultation that I will be getting the one they have "in stock." My expected hospital stay is 7–10 days, and I am planning to take 6–7 weeks off work for recovery.

While I wouldn't say I'm looking forward to the surgery, I'm feeling good about it. Fortunately, I have a very supportive home and work environment (including great health insurance!). And I am looking forward to testing the surgeon's belief that I will be even stronger post-op. Just this morning, I signed up for my very first triathlon—the 2014 Chicago Triathlon (sprint distance) in August!

Looking back, I realized that 2013 was a fairly uneventful heart year for me (in a good way!), which resulted in very few blog posts. While 2014 will clearly be more eventful (and, I'm sure, more challenging), I am looking forward to documenting my journey from the operating room to the finish line!

Postscript: An abbreviated version of this entry was published on the ACHA blog in December 2013.

Sunday, September 22, 2013

Perspectives on Philanthropy: a heart walk & a black tie gala

The ACHA "mission table"
I am still winding down from what was a whirlwind first half of the weekend. On Friday after work, I flew from Chicago to Cincinnati so that I could participate in the Cincinnati Congenital Heart Walk yesterday morning. In my role as an ACHA Heart to Heart Ambassador, I was invited to attend the walk, staff the mission table, talk with walk participants about ACHA, and speak during the opening remarks. Just as I did at the walk in Chicago in June, I briefly shared my personal story as an adult with a congenital heart defect and spoke about my involvement with ACHA and the work that ACHA does on behalf of the CHD community.

Walkers in Eden Park
During the post-walk festivities, a young couple approached me and asked if I would be willing to take a photo with their 10-month-old son, who also has tetralogy of Fallot. It was truly a pleasure and an honor to be asked, and the entire family was just delightful. (The little boy's two older sisters were also there to walk for him.) I was so pleased to learn that his surgery—which was done months before—had gone very well and that his outlook was a positive one.

Moments after our brief conversation and photo shoot ended, another heart mom who was standing nearby approached me with palpable enthusiasm and excitement. She commented on how sweet that gesture was and how I instantly became an inspiration for that young couple—a  reminder (now with photographic proof) that their little guy has a real chance of growing up and being able to live a completely normal life.

My "official" role at the walk was to represent ACHA and to be a spokesperson for the organization. What I was not consciously thinking about in advance was the very personal impact that my presence and a few simple words could mean to others who were there. As I told the heart mom who commented on my interaction with that young couple, I don’t generally think of myself as an inspiration for others. Rather, I just do this work because I enjoy it and because it is so important to me personally. She then looked me straight in the eye and reminded me that—with that single photograph of me holding their little baby boy—that family would always have the memory of that moment and hope for their son’s long-term prospects.

After the walk was over, I headed directly to the airport for my return trip to Chicago. I was, after all, scheduled to work the black tie gala for my "day job" that evening. (For those of you who don’t know, I work in the Development office of the Chicago Symphony Orchestra.) I was fortunate to catch an earlier flight on standby and upon landing headed directly from O'Hare to my office, where my tuxedo was already waiting for me. As our biggest fundraising event of the year—with over 600 guests in attendance last night—Symphony Ball is an all-Development-hands on deck ordeal.

The Grand Ballroom
I arrived at the hotel, where the red carpet had already been unrolled and was awaiting our guests who would soon be coming directly from Symphony Center after the concert. The music that night was transformative, the ballroom exquisite, the evening gowns stunning, and the bars wide open. The event’s co-hosts, our music director, our guests, and my fellow colleagues on staff were all pleased. By just about any measure, it was an elegant, enjoyable evening and a very successful fundraiser.

As I think back on my two-city, two-fundraiser day, I can’t help but be somewhat amused by the polarity of these two events, both of which fall under the broad term philanthropy (or development or fundraising). At the most basic level, yes, these two events had the same end goal: to raise money for an important charitable organization. But the vast differences between the two fundraising events clearly reflect the vast differences in the types of the beneficiary organizations.

Me with two of my
awesome coworkers
Now don't get me wrong. I do enjoy getting dressed up and doing the whole black tie thing every now and then. And there is certainly something glamorous about attending (even if just as a working staff member) a "see and be seen" type of fundraising event like this. But it was particularly interesting for me to experience these two very different worlds on the same day. I started my Saturday under an overcast sky in a Cincinnati park to help raise money for congenital heart disease. I ended the day in an elegant ballroom in a downtown Chicago hotel wearing a tuxedo helping to raise money for a world-renowned symphony orchestra.

Anyone familiar with the fundraising industry already knows that approaches to philanthropy and fundraising events are as diverse as the types of organizations out there that are seeking charitable contributions. And this is certainly appropriate. But as I had this unique opportunity to experience these two very different scenarios in such a short amount of time, I was again reminded of the vast diversity within my chosen profession.

I was exhausted by the end of the night, but it was truly a great day. Both events were quite successful and (I think) each exceeded its fundraising expectations. But while I enjoyed seeing and participating in both events, there is still no question in my mind as to where my heart (no pun intended) truly lies.

Postscript: An abbreviated version of this entry was published on the ACHA blog in November 2013.

Saturday, August 3, 2013

Two Years Later & Still Beating Strong!

It's just after midnight here in Chicago, so I can officially post this now.

It was two years ago today that I had the bicycling accident that ended with a trip to the emergency room and a follow-up visit to the cardiologist that ultimately prompted me to start this blog and to take a whole new look at my congenital heart disease.

To this day, I still believe that the accident happened, at least in part, to give me a much-needed wake-up call to take better care of my heart. As a result, the last two years have been pretty amazing. Not only have I had the opportunity to travel to Washington, DC, twice to lobby for CHD awareness and funding at the federal level, but I've also met so many amazing, dedicated, and passionate people in the CHD community. My life has truly been enriched by having made these connections!

As most people know, I have made a conscious choice to be very open about my heart condition. (I blog publicly about it after all!) In early June, through my volunteer work with the Chicago Adult Congenital Heart Network, I was also invited to talk about it and to be filmed for an informational video featuring adult CHD patients and their stories. A link to the final clip of my interview is below, and I have to say that I am quite impressed with the folks at Rush Powers Media. (At the time, I was convinced that I rambled my way aimlessly through the entire filming. Yet they somehow managed to edit and splice it to make me sound rather coherent.)

Thank you to everyone who has been on this journey with me for the last two years (or for any portion of it). Like many things in life, this journey has come with its ups and downs. But I know that it has certainly made me a stronger person, and I look forward to the journey ahead filled many heart healthy years and countless miles on the bike!

Tuesday, April 9, 2013

Making a Difference Nationally and Locally

It's been a while since I've written a blog entry, and it feels good to get back into itMy next posting for the ACHA blog—scheduled to be published tomorrow—looks at the work I have been doing both nationally and locally as an advocate for the CHD community.

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

But what was most impressive to me this year (only my second year attending the event) were the overall numbers:
  • Over 100 volunteer advocates attended.
  • More than 26 states were represented.
  • More than 120 legislative office visits were held.
  • At least 9 new House members joined the Congressional Congenital Heart Caucus.

Only a month ago, the Caucus had a total of four members. Our one-day visit to Capitol Hill more than tripled that number (and there may be even more Representatives signing on in the near future)! I personally have not seen such an immediate result of grassroots action like this before. The CHD community should be proud of its collective efforts, and I was so pleased to be a part of it!

Following last year’s Advocacy Day—at which I successfully got my own Congressman to join the Caucus—I received a number of questions from fellow advocates asking how I had done it. “What’s the trick?” many would ask. “How can I do it myself?” As a newbie last year, I really didn’t know what I was doing any more so than any of the other volunteers who attended. I simply followed the guidelines and suggestions provided by ACHA and Mended Little Hearts and told my story (no pun intended) straight from my heart. To my surprise, it worked! Fortunately, I have been able to continue cultivating the relationship with my Congressman over the last year in order to keep him engaged and aware of our efforts.

But the work doesn’t stop there. While we went to Washington, DC, with a collective voice, there is still much on-the-ground work to do in each of our own backyards. The availability of and access to ACHD care is not universal, and many adult patients are either lost to specialized care or simply unaware of their options. In Chicago, a group of ACHD cardiologists have come together to create CATCH—the Chicago Adult Congenital Heart Network—a patient-centered, inter-institutional network established to ensure that all adults with CHD in the Chicago area are receiving the appropriate follow-up care.

As the patient representative for CATCH, I have the opportunity to work with some amazing doctors—recognized ACHD specialists who are not satisfied with the status quo. These medical professionals saw the data and realized that a great deal of work must be done to get more adult CHD patients into the proper care. Working in partnership with ACHA, CATCH envisions a day when the Chicago region—with its multiple leading hospitals and ACHD clinics—is providing all ACHD patients in the region with the care they need. Ambitious? Yes! Impossible? Only if we give up!

I have referenced this quote in the past, but I think it is completely appropriate to do so again here:

“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

At both the national and the local levels, the CHD community has proven Margaret Mead right multiple times. But in order to ensure our future success, doctors, parents, and patients must continue to work together to challenge and to change the status quo. We owe it to ourselves and to each other to do what we know is right in—and for—our hearts!