By Jennifer Rogers
17 Feb

When You Meet Another with CHD, Part 2

Wednesday, February 17, 2021

Click here to read part 1 of this blog post.

Hello! My name is Jennifer Rogers, and I have tetralogy of Fallot. I have been an ACHA blogger since 2018, and it has allowed me to meet many people like me, living with congenital heart disease. I believe highly in community and accountability, which is why I am so thankful to be part of this incredible organization. I really appreciate the opportunity to collaborate with Jared Gould, a fellow ACHA blogger, to discuss life with CHD and how our journeys have affected each other.

Jared was born with hypoplastic left heart syndrome. I read his series Pedaling the Pounds Off, and was inspired and motivated to stay active and be healthy. I reached out to him via Instagram in October 2020 to ask if we could talk one night. That conversation turned into friendship when we realized we shared the same feelings about our life experiences with CHD. We met in person in December and were able to ride our bikes together, which was pretty cool!

We sat down together and wrote summaries of topics discussed in this post as well as the post from last week. Our hope is that we can inspire others like us to reach out to members of this community, and for people to understand our ideas and beliefs of advocating for CHD.

If you are a member of the ACHA community and are struggling to connect, please feel free to reach out to me. Here are my social media accounts: Instagram, Facebook, Twitter.

Having a Friend

Jennifer: Growing up, I only knew one other person who had a congenital heart defect, and she was older than me. I wasn’t introduced to ACHA until the fall of 2017 when I met Paula Miller, ACHA’s Senior Education Manager. Paula introduced me to other patients like myself, and a few months later I attended a walk where I met other patients. In 2018, the day before I had surgery, I met a girl who I now call my “heart sister,” who is 8 years younger than me with the same heart defect. Later that year, she introduced me to some of her friends who are also heart patients. But even with these connections, I still had not met anyone my age with a congenital heart defect. When I read Jared’s blogs, my gut told me I needed to reach out to him. We ended up talking on the phone for a few hours one night, and I knew I had made the right decision. I discovered that Jared and I shared a lot of the same experiences and feelings regarding our lives. We realized how important it is to have a friend similar in age who understands the physical, mental, and emotional aspects of living with a complex congenital heart defect. It is so comforting to know that I can share my thoughts and feelings with someone who understands what I have experienced.

Jared: After meeting Jennifer, I strongly suggest taking time to reach out to others in this community. Having a friend who experiences life with CHD is a great way to discuss your challenges and receive great feedback. If you’re afraid to connect with someone in this group, I am available. My socials can be found by clicking here.

Live Not By Your Heart Condition

Jennifer: I have chosen to be an advocate for adults living with CHD. While I choose to advocate, I do not let my heart defect define who I am. My experiences with CHD have led me into my career of becoming a cardiac sonographer. I could easily live in fear and self-pity, sure, but I feel like I have a huge opportunity to educate others and share my story in hopes that more adults with CHD will receive the proper care they need. I can’t control the fact that I don’t have a normal heart, but I can control how I let my diagnosis affect me. While I do experience feelings of fear, trauma, and guilt, I try to focus on all the positive things happening in my life. What if I’m a CHD survivor because I need to be an advocate? What if I had to experience the trauma of surgery to comfort those who are facing it? There is so much more to my life than living with a heart defect, and I will make the absolute most of it.

Jared: Growing up with CHD is a sure way to mature much faster than many people, we know that. Part of that quick maturity is growing up with considerable health concerns. However, fear does not have to control our lives. While I often think about the negative aspects of my condition, I fight against it by working on my ambitions and pursuing a life that I want. I believe what we regret most in life are the things we don't do, so I just do!

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Disclaimer

The opinions expressed by ACHA bloggers and those providing comments on the ACHA Blog are theirs alone, and do not reflect the opinions of the Adult Congenital Heart Association or any employee thereof. ACHA is not responsible for the accuracy of any of the information supplied by the ACHA bloggers.

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.