A Lifelong Lesson: "I Got This"

Note: Today is National Write Your Story Day! Karla is sharing her story below to spread awareness about lifelong care for congenital heart disease (CHD) and the ways ACHA’s Heart to Heart Peer Support Program can guide you on your CHD journey. We encourage you to write and share your story to spread CHD awareness too!

In February 2012, during Heart Month no less, my adult congenital cardiologist told me that it was time to replace my pulmonary valve via open heart surgery. This would be my second open heart surgery, the first taking place when I was nine months old. Open heart surgery felt too mysterious for my taste, even with all the helpful information provided by my adult congenital heart disease (ACHD) care team. Being the kind of person who feels most comfortable with a thoughtful plan and lots of information, I felt that I would benefit from peer support while I prepared for my heart surgery. However, what I didn’t expect was the long-lasting positive impact connecting with a peer would have on my life.

I had been a member of the Adult Congenital Heart Association (ACHA) for a year at that point and noticed they had a Heart to Heart Peer Support Program. I requested a match with one of their Peer Mentors and was matched with a lovely woman, Laura. She was a fellow tetralogy of Fallot patient who also had her pulmonary valve replaced via open heart surgery. It was reassuring to connect with someone who had a similar history to my own. Before we even spoke, I felt a sense of hope and connection just from being matched with her.

When I received her first email, an unexpected wave of emotion came over me. Laura was the first congenital heart disease (CHD) patient that I had knowingly spoken to. Deep down, I knew she wouldn’t be the last. Her first email to me marked a milestone in my life. Before my match with Laura, I had faced my challenges as a CHD patient alone, which is not to suggest that I didn’t have loved ones who cared for me—I certainly do and am grateful for them as well. However, there is something uniquely meaningful about commiserating with someone who has had a similar experience to your own.

Occasionally, I would get an email from Laura just to check in and see how I was doing. Those emails would warm my heart. Laura was a natural encourager, rooting for me along the way. She was also a wonderful listener and took care in validating my feelings. Laura never crossed a line by trying to give me medical advice, become my friend, or therapist; however, she would share nuggets of wisdom with me. She reminded me to advocate for myself, breathe, walk, and tell myself that “I got this.” I wonder if those were her three favorite words.

During the weeks following my surgery, I often reflected on the conversations my Mentor and I had. They became a kind of guide throughout my recovery. And in the years that followed, I would occasionally re-read the emails from our match, which had become a journal of sorts. Looking back over them, I could see the concern I felt written between the lines. She had too, and her encouragement served as a longtime friendly reminder to advocate for myself, rest, and be patient. After all, “I got this.”

Then, in 2014, unbeknownst to Laura, she was my mentor once again. I was humbled and honored to become an ACHA Heart to Heart Peer Mentor. While I served as a mentor, I would often think of the example Laura set for me, striving to help my fellow patients feel as seen and heard as Laura did for me. In 2019, Laura passed the day before the Walk for 1 in 100 in Seattle, WA, which I happened to be attending. During the Seattle Walk, we honored her service to the CHD community with a moment of silence. In that silence, I felt her memory loud with hope. Whenever I think of Laura, I am reminded of the comfort we glean from connecting to community and am filled with gratitude for the mentors who have gone before us. This was the unexpected gift Laura’s mentorship gave to me—a sense of connection to the CHD community.

In 2022, I was again humbled and honored to join ACHA staff as the Peer Mentor Coordinator. ACHA’s Peer Mentors inspire me every day with their dedication and commitment to support CHD patients and their loved ones. I feel that peer support provides us with guidance, community, connection, and hope—meaning that we do not suffer in silence or worry alone. In this way, Laura’s memory lives on. For that gift, I am grateful.