Thursday, September 25, 2014

Celebrating our Successes & Looking Ahead: A recap on ACHA's 7th national conference

Earlier this month, I attended ACHA's 7th national conference (my first!) in my hometown of Chicago. The conference brought together over 500 CHD patients, family members, and medical professionals for a weekend of learning, sharing, and collaboration. What an amazing group of people to be among! For many of us patients, who can often feel isolated and alone with our CHDs, this was a wonderful opportunity to connect with one another, learn together, and share our stories and journeys with others who truly understand and can relate to our unique situations.

Photo courtesy of ACHA
The conference theme—Translating Quality of Care into Quality of Life—resonated throughout the weekend at joint sessions, small breakout presentations, and topic-specific clubhouse groups. I had the honor of serving on the conference faculty and speaking at a joint session about my own journey of falling (quite literally!) back into care after a 10+ year hiatus. And I had the privilege of connecting with friends from around the country and making some new ones.

I, like many of the conference attendees, will have stories and memories about that weekend for years to come. But one thing in particular that will stick with me (not only from the conference itself, but also from my volunteer work with ACHA) is the genuine passion and unwavering dedication of so many people within the CHD community. It is truly inspiring to see the determination of so many medical professionals, patients, and family members working together to fulfill ACHA's core mission: to improve and extend the lives of the millions born with heart defects.

On one hand, I am a bit surprised that today—in 2014 and with all of the advances made in medicine—so many of the efforts within the adult congenital heart disease community still feel somewhat grassroots. A while back, when I first learned that no board certification exists for ACHD cardiologists, I was surprised to say the least. But when I saw the closing keynote address at the conference—"Sustainable High-Quality ACHD Care in the United States"—I got a better understanding of where we are currently in the context of CHD care and treatment historically. I not only felt inspired and motivated. But I also felt like we are actually a part of history in the making.

As a CHD community, we have come so far already. And yet we still have so far to go. I wholeheartedly (no pun intended) applaud the efforts of ACHA’s Medical Advisory Board for its leadership and ability to make important advances on behalf of all CHD patients. Not only is board certification for ACHD cardiologists soon becoming a reality, but we will also soon have standards established for the accreditation of ACHD centers throughout the country.

Naturally, there was a great deal of excitement built up during the conference, and it is imperative that we not lose that momentum going forward, especially among those of us (myself included) who are not immersed in this work each and every day in our professional lives. And we must find ways to increase the resources allocated to the CHD community—both in total philanthropic dollars and federal support. (One conference presentation estimated that annual philanthropic support toward congenital heart disease—for both children and adults—comes to only $1.65 per affected individual currently, as compared to $65.65 per individual with type 1 diabetes or $13,517 per individual with cystic fibrosis.)

As we celebrate the fact that more and more people with CHD are living to adulthood, we recognize that this also presents new challenges for us; and I believe we have the responsibility to continue working together—as patients, doctors, and advocacy organizations—to continue translating quality of care into quality of life far beyond a weekend conference.

Monday, September 1, 2014

Changing Cities, Transitioning Care

From my perspective as an adult with CHD, one of the most unsettling things about moving to a new city—aside from saying goodbye to family, friends, and the city that I've called home my entire life—was making sure I got connected to another quality ACHD clinic. In late June, I moved from my home in Chicago to Washington, DC, to pursue an exciting new job opportunity. Having fallen out of CHD care once before (as a teenager)—and having just gone through my second open heart surgery six months prior—there was no way I was going to let my CHD care fall by the wayside again.

I would be lying if I said the move wasn't without a little bit of worry. I have wanted to move out to the east coast for a few years; and this new job was a professional next step I didn't want to pass up. But to leave my ACHD team at the University of Chicago (who had seen me through so much over the last couple years and provided excellent care throughout) was certainly cause for at least some anxiety.

With my connections to ACHA and the larger CHD community, I knew I wouldn't be going through this alone and could (at the very least) turn to the ACHD Clinic Directory as a starting point. But when you've built a rapport with your cardiologist and the medical team at your hospital, it's tough to say goodbye and move on—even when you know the time is right to do so. Fortunately (in this case anyway), the ACHD community is relatively small; and I was able to get a recommendation from my ACHD cardiologist in Chicago for one here in Washington, DC. I had my first appointment with my new cardiologist last month and don't think I could be happier. While it will naturally take some time to develop a similar rapport to what I had with my medical team in Chicago—and I'm really hoping to not have the same opportunities to have as in-depth of a connection (read: caths, stents, surgeries, etc.)—I feel confident that I am in good hands here.

When I walked into the clinic at the Washington Adult Congenital Heart Program (WACH), one of the first things I noticed was a display of brochures for ACHA's 2014 National Conference—a good sign! My nerves were calmed even further when I met with my new ACHD cardiologist, who had taken the time to thoroughly review my records from Chicago in advance and who was genuinely excited to welcome me to the adult congenital clinic in DC. He was so pleased to see how well my recent surgery went and impressed at the results of my post-op stress test. It felt like we had established a connection right away.

In some ways, I think Chicago will always be my home; and whether or not DC will become a long-term residence for me is yet to be seen. But having gotten connected to a local ACHD doctor to establish care for myself here definitely makes this east coast locale a bit more comfortable. I'm excited to see where this journey takes me next!