Her passion for advocacy made her the perfect person to enlist to help raise awareness about CHD – and OHSU’s incredible care team – this CHD Awareness Week. Take it away, Kimmie!
What are Congenital Heart Defects?
Congenital Heart Defects are problems with the heart’s structure that are present at birth. These defects range anywhere from leaky valves and holes in the walls of the heart to more severe forms, where blood vessels or heart chambers may be missing, poorly formed and/or in the wrong place. CHDs are the most common birth defect and are also the leading cause of birth defect-associated infant illness and death in the U.S.
How has your heart defect impacted your life?
Living with a critical CHD changes the way you see the world. I’ve heard the words “science hasn’t caught up with you yet” more times than I would have liked. I spent most of my childhood in hospitals (my second home!), limiting my activities and spending a lot of time feeling scared and wondering why I had to go through any of this (truthfully, I sometimes still wonder that). Living with CHD has the potential to drain a person, put a lot of stress on the family and deplete finances. That’s why I believe it’s important to be an advocate, to show the possibilities beyond the defect and to continue to fight for a better life.
How has OHSU been a part of your CHD journey?
OHSU has played an integral part in my heart health journey. CHD patients are in it for the long haul, and I’ve found that OHSU’s team atmosphere has helped through every step of the process. They helped my family when I was younger, and they helped me come to terms with the fact that this will never go away – something that was difficult to accept as a teenager and young adult. Now, as an adult, I find that they’re able to help educate me on how to advocate for my community.
I feel lucky to be a part of a health community that sees value in patient relationships. The Cardiac Cath team quite possibly has some of the funniest people on it; there’s nothing better than laughter before settling in for a cath! I’m grateful that my team works so diligently to seek out procedures and new treatments to keep my heart going so I can continue to live a productive life.
Is there anything you wish people knew about CHD?
CHD in adults aren’t always visible on the outside. We have some wicked scars (we call them ‘battle zippers’) and we might walk a little slower or look tired (this happens to everyone though, right?), but those may be the only external indicators. As a result, I feel like the CHD community gets overlooked. Our battle is internal, but it’s still a serious one.
While there is a large community of people living with CHD, it’s not highly publicized or funded. There are more adult survivors like me than ever before due to technological advances, and I believe it’s imperative that CHD starts to gain the attention, funding and research needed to help bring more treatment options to those living with CHD. Even with the limited funding for CHD, I’ve witnessed huge leaps in science just in my lifetime. Can you imagine the amazing possibilities if more resources became available? Wouldn’t it be wonderful to live in a world where a CHD patient never had to hear “We’re waiting for science to catch up with you?”
Kimmie is sharing her CHD journey on her blog, View from the Recovery Trail. Though she can’t change the existence of heart problems, she hopes to change the way people think about them by educating the public about the CHD community.
Another great resource Kimmie recommends for adults and families dealing with CHD: the Adult Congenital Heart Association (ACHA).