I was fortunate enough to be among hundreds of ACHD specialists, nurses and advocates who gathered in Toronto last week for the 25th International Symposium on Adult Congenital Heart Disease. Of particular interest was the one-day symposium on heart failure that covered all aspects of this evolving challenge in the rapidly-growing ACHD population.
Are you aware that as the CHD population graciously ages into adulthood, heart failure is the leading cause of cardiovascular death in adults with CHD? In fact, Marelli, et al, report a five-fold increase in CHD deaths due to heart failure at five years as compared to the non-CHD heart failure patients.
This brings up important questions. If you are living with heart failure, who takes care of you? Have you transitioned out of ACHD care into a “regular” heart failure clinic? Does the team taking care of you know about congenital heart disease?
What I learned in Toronto is that entry into heart failure care though your ACHD clinic results in a better outcome. This should not come as a surprise to us but for many, it does. All of that said, it still takes a myriad of specialists to take care of you. If you picture this as a wheel, this is what it will look like—your ACHD cardiologist will be at the center with all of the other specialists as the spokes.
But talking about heart failure brings up a topic that is seldom discussed in the ACHD world—end of life (EOL) care. Do ACHD patients want to discuss EOL? According to Dr. James Downar, they do. Visit the ACHA Blog later this week when I share more about EOL issues for CHD patients, including some very important facts.
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The contents of this blog are presented for informational purposes only, and should not be substituted for professional advice. Always consult your physicians with your questions and concerns.