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!

Sunday, February 9, 2014

The one month post-op report

My pulmonary valve replacement (PVR) surgery was one month ago today, and this past month has been a journey like none I can remember. While there were definitely some challenges (ones I hope to never have to repeat again), I have been fortunate to experience the most amazing outpouring of support from my family, friends, and coworkers.

Some quick facts and figures:
  • Approximate length of my surgery: 5.5 to 6 hours (based on rough estimates; I have not yet seen the official operative report.)
  • Total # of days spent in the hospital: 11 (2 nights in the ICU; 8 nights in the regular room in the telemetry wing)
  • "List price" for all medical services billed to my insurance to date in 2014 alone: Just over $331,000. (I have never been more grateful to have good insurance!)

I woke up from surgery attached to so many different things; I figured one more connection would turn me into a Wi-Fi hotspot. I had a breathing tube down my throat, a central line in my neck, at least three other IV lines (including one arterial line), two chest tubes, a urinary catheter, a telemetry heart monitor, and a pulse oximeter. (There may have been more, but that's what I can remember.) Thus began the true endurance event for me.

I spent a total of 11 days in the hospital (2 nights in the ICU and 8 nights in the regular room), a slightly longer-than-anticipated stay due to elevated levels of drainage from one of the chest tubes. Fortunately, I had a fantastic team of doctors and nurses caring for me the whole time I was there; and at one point I was even referred to as a poster child for the hospital's heart surgery program because my post-op progress was so impressive.

My first (outpatient) post-op checkup was on January 24, where I had a chest x-ray, an echo, and the sutures from the chest tube sites removed. (There were no sutures to be removed from the sternal incision. After surgery, I was "sewn" back up with what the doctors described as human super glue.) Both my surgeon and cardiologist were very pleased with my progress and the results they saw from those tests. The echo indicated no regurgitation (leaking) of the new pulmonary valve, and it showed that the size of my right ventricle (RV) had already started getting smaller. Before he left the exam room, my surgeon wished me well and even asked him to remind him of the date of the triathlon this summer!

Follow-up appointment #2 was on February 6; this one was just with the cardiologist. (At the previous appointment, the surgical team said they were done with me unless I had any questions or problems going forward.) Once again, I had a fantastic checkup; and the doctors continued to be pleased and impressed with my progress. The ongoing discussions among my medical team about my interest in the triathlon has made it clear to me that I can't get out of it now even if I wanted to. They're all talking about it, routing for me, and looking forward to hearing my results!

I just recently received the pre-approval letter for cardiac rehab from my insurance company; and I have my orientation appointment scheduled for February 20. I am considering the rehab program the official start to my triathlon training! It's a 12-week program, and it should conclude just before the time I will need to start a formal 12-week triathlon training program. (I really didn't plan this schedule in advance, but it seems like the timing will work out quite well.)

When I found out back in November that it was time for me to have this surgery, I knew that 2014 would bring its share of challenges, as well as its ups and downs. Sure, this past month was not particularly enjoyable; but I could not be happier to have this surgery behind me and to now be well on the road to recovery. To all the wonderful people—family, friends, and colleagues—who visited or sent cards, flowers, texts, and Facebook messages of good wishes and support, I thank you from the very bottom of my newly-repaired heart!

If you haven't already done so, mark your calendars for the Chicago Triathlon on August 24, 2014. It's only 195 days away! I will see you at the finish line!

Wednesday, January 1, 2014

2014: A New Journey Begins

My pulmonary valve replacement (PVR) surgery is one week from tomorrow. It should certainly make for an interesting and challenging start to the New Year! Over the past couple weeks, I've had the occasional "Why me?" moments, along with a couple seemingly out-of-the-blue breakdowns from the emotional overload. But, truth be told, I've been in a good place mentally with the upcoming procedure and subsequent journey. I know that it won't be easy, but I am grateful to be approaching this proactively and under the expert care and guidance of my ACHD team.

I am looking at January 9 as the official start to my training for the 2014 Chicago Triathlon. While I obviously won't be in the pool, on the bike, or on the treadmill in the days immediately following surgery, this procedure is simply something I need to have done in order to maintain my longer-term health. Much like the 2012 Chicago Half Marathon (which I completed eight and a half months after receiving my stent), the triathlon is an important milestone for me both physically and mentally. Seven and a half months after my surgery, I intend to complete this new-to-me endurance event as a way to prove to myself that I am back and (likely) even stronger than I was before.

Here is to a happy, healthy, and all-around successful 2014!