Friday, June 09, 2017
I am one in 100. And after this past weekend at the Adult Congenital Heart Association’s (ACHA) 8th National Conference, I am also, proudly and passionately, one of 502. I am one person of the 502 people who attended this conference, who furthered our knowledge of congenital heart defects (CHD), met others with our same conditions, surgeries, limitations and backgrounds, and learned what we can do to advocate for ourselves and our heart family and make the Adult Congenital Heart Association the leading nonprofit serving the CHD community in the world. In the simplest of terms, after this weekend, I am amazed and empowered.
A little back story about my own experiences as an Adult Congenital Heart Disease patient: I was diagnosed at two months old, had all four of my heart surgeries in my home state of Michigan, then moved to Minnesota and transferred to an adult congenital cardiologist. I have been fortunate enough to be a part of the heart community for many years through Camp Odayin. One of the first things I realized this weekend was how lucky I was to be introduced to this community at the age of 13 as I met many individuals who were meeting heart patients for the first time this weekend during the conference.
This weekend, I was most looking forward to learning better tools to advocate for myself as a patient and how to become more involved in the Adult Congenital Heart Association to raise awareness. And one of the things that surprised me the most was how many other heart patients have dedicated their lives and careers to helping the population to which they belong. As a social worker who works with individuals with disabilities, I felt a direct connection to others who have committed their lives to helping these populations. Some of my favorite presentations were done by these individuals, and I loved hearing and witnessing the amount of passion they have for advocating and treating current and future CHD patients.
As a first time conference attendee, I took advantage of the majority of the lectures offered. As a patient, I learned through these lectures that asking questions and challenging your Adult Congenital Cardiologist is not only okay, but encouraged. I learned that seeking a second opinion is many times the right thing to do, and the only thing to put your mind at ease. I discovered that I am far from the only patient who puts their pediatric cardiologist, the first person who said “yes, I can” and saved my life, on a pedestal. I received advice on the difficult transition from pediatric to adult congenital cardiology and talked to others who have made the tricky moves between states and across the county, some multiple times. Before this weekend, I had no idea that I could request and be in possession of a copy of my own medical records. One of the first things I did when I got home this weekend was to request these, and I will transfer them to a USB or Google Drive for my own use and reference. I feel empowered as a patient.
I have always considered myself an advocate for Congenital Heart Disease. I share my story any time I’m presented with the opportunity, wear my scar and medical alert bracelet proudly, and donate to and attend fundraising events that support this community. But this weekend, I learned how to take this a step further. I learned the importance of advocating for the 60% of CHD patients who receive no care and the 90% who do not see the right specialists. And now, I’m ready to take it further. I intend to continue to contact my representatives to ensure that they know about the acts that support CHD populations. As presenter, Michael Pernick said in his closing address, I’m ready for Congress to know about ACHA and be scared of us. I’m tired of feeling marginalized by Congress and the new proposed insurance plans. And I so desperately want the next generation of heart patients to feel loved, supported and advocated for, not just by the CHD community, but by Congress, the country and the entire world.
I will not lose contact with all of these incredibly inspiring people I met this weekend at my first ACHA conference. I will band together with my heart brothers and sisters, our family members and loved ones, and the amazing practitioners that support us to make the changes we so desperately need. Thank you, from the bottom of my heart, to everyone who put so much time, effort and dedication into this conference. I heard some amazing quotes in the presentations, but this one was by far my favorite: “If you want to go fast, go alone. If you want to go far, go together.” Now, let’s band together, get out there, and change the world.
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