Posts by Paula Miller

Did you know that one out of 100 people have congenital heart disease (CHD) - meaning that when they are born they have something structurally wrong with their heart. It has nothing to do with diet or smoking or weight. For me, it was four different defects. Rolled into one, it’s called Tetralogy of Fallot. When I was born there was no surgery and my chances to live was very low. I am lucky and I did eventually have surgery (in fact three of them so far). BUT I will never be cured.

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A key issue in parenting when you have congenital heart disease (CHD) is being able to balance the day-to-day demands of being a parent and living with CHD. 

Some days it may be hard to figure out who to put first – your child or yourself.  However as hard as it may be, it’s important to take care of your own physical and emotional needs first. As a parent this may not sound “right,” but everyone will benefit in the long run if you are in better health and have more energy.

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Over the past year, as a representative of ACHA, I have had the privilege of sitting on the Patient Engagement Council (PEC) of the Patient Outcomes Research to Advance Learning (PORTAL) clinical data research network, which is funded by the Patient-Centered Outcomes Research Institute (PCORI). There are 11 research centers in this network that is made up of four health delivery systems: Kaiser Permanente, Group Health Cooperative, Health Partners and Denver Health.

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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?

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In reality, the advent of the internet and what I recall as an AOL chat room was my initial introduction to ACHA. It was in late 1998 or 1999 and like so many adults living with congenital heart disease (CHD), I was looking for someone like myself. I knew I couldn’t be the only one alive who was born with the birth defect. There had to be someone out there who understood me.

Two of the young people I “chatted” with were Karen Klein McNulty and Anthony Cordaro, Jr. They, along with Bonnie Paulsen, Kimberly Ochs, Mary Kay Klein (Karen’s mother), and Tony Cordaro (Anthony’s dad), were the founding board members of ACHA. What a vision they had! And what a turn my life was about to take!

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