Thursday, January 9, 2014

Finding a Community of Like-Hearted People

I created this blog in order to offer support for others with congenital heart disease preparing for Open Heart Surgery.  After my diagnosis I felt alone and wished to find a resource where I could learn what it meant like to be a patient with congenital heart disease preparing for surgery.  The doctors provided tons of helpful information, but the "science-y stuff" does not always translate into "and this is how it will make you feel."  I tried to find help in the stories of people going through bypass surgeries, but their situation was not at all similar to what I was about to go through. I sought a community which could relate to what I was going through and share their experience.  Throughout the process, I wanted to know I was not alone and I wanted to see the hope that I could not feel.  

While I searched for this community, I decided to create a space where those who, like me, had not yet found the group, could find a temporary example of someone going through treatment. But then I found the Adult Congenital Heart Association and the mission changed. The Adult Congenital Heart Association (often abbreviated to ACHA) is an organization created for those born with congenital heart defects.  Not only has it created a vibrant community and support system, it has also focused on raising awareness and pushing for further research in the field of congenital heart defects.  ACHA offers a multitude of resources ranging from a list of treatment centers throughout the United States and world, to materials on different defects and even  how to apply for disability and health insurance (to find them, simply go to There are so many additional services and types of information provided by the organization as well.  For me, the most important part of ACHA has been its volunteers and members.  

After I reached out to ACHA they reached back and matched me with an Ambassador- a mentor to help me through the first few months of dealing with my diagnosis and preparing for surgery.  She has been an incredible help, sharing her experience and offering an open ear whenever I didn't feel like anyone else would be able to properly listen.  If that were not enough, I was then connected to one of the ACHA Facebook groups for women with congenital heart defects.  Here I was, and am still, able to meet other women going through exactly what I was and to learn everything about their fight with congenital heart disease.  

I was no longer alone, and that was when I decided to change the mission of my blog.  After being shown the incredible resource of the Adult Congenital Heart Association I decided I wanted to create a space that shared my story and connected those I know, and those I do not, with the community of the Adult Congenital Heart Association.  My new goal was not just to share my story, but to educate those around me in my community and in cyber-space of what ACHA is and how they can be involved, whether for personal support or information on this disease.  

As I continue to share my story as I a Zipper Sister in the coming weeks and months, I will also seek to spread the knowledge and experience I have gained from being a part of this incredible community.  As a woman with a congenital heart disease in this place and age my community of like-hearted people has quickly become vital and I wish to share that importance with the cyber world!

1 comment:

  1. Katherine,
    So proud of you for creating this blog. I enjoyed watching your video and seeing for myself that you are breaking records with your recovery. You are an inspiration! Hopefully this blog will help others who have the same congenital heart problems that you have.