When You Meet Another with CHD, Part 1
Sunday, February 07, 2021
Hi, my name is Jared Gould. Living with hypoplastic left heart syndrome, I enjoy opportunities to share information about my experiences with patients across the country. I started blogging for ACHA in July 2019 and since have met incredible people living with CHD. My blog series Pedaling the Pounds Off ended in early 2020, but I am now partnering with Jennifer Rogers, another ACHA blogger and friend, to write about issues facing CHD patients.
Jennifer was born with tetralogy of Fallot. We met virtually in October 2020 when out of nowhere I received a message from her on Instagram asking if we can connect. During our discussion, we discovered that we shared common views and experiences growing up with a heart condition. We even shared similar views on what it meant to be writing for ACHA and how we both questioned if we were the correct people to be sharing our stories.
Together, we sat down in Memphis, TN, to write brief summaries of the topics below. We hope that our perspectives enable the rest of the community to understand our shared beliefs, our differences, and how the community can take these thoughts to go forth helping others in the community.
Jennifer: Jared motivated me to stay active and not let my heart defect limit me. I’m so thankful I reached out to him and for the friendship we have. We are both grateful to ACHA for providing us a platform to connect!
Jared: Speaking with another person who grew up with a congenital heart defect helped me process many questions I had about myself. Jennifer specifically helped me understand how I can better process my fears of operations I might need in the future. She also strengthened my understanding that we all have similar questions about life as a result of our heart defects.
Jared: When I was writing the series Pedaling the Pounds Off, I questioned whether I was the right person to share a weight loss story with the CHD community. Unlike many living with CHD, I live with minor complications. I felt it was pompous of me to normalize weight loss as a CHD patient when others cannot lose weight as easily as I had. Jennifer indicated that these thoughts are commonly associated with survivor’s guilt.
Jennifer: Two and a half years ago, I had my second open heart surgery to have my pulmonic valve replaced. It took over a year to admit that I was traumatized from having the surgery. One of the main reasons why it took me so long to admit how I felt is that I was struggling with survivor’s guilt. I often told myself that I did not deserve to feel traumatized because I recovered so well and have continued to live a fairly normal life while accomplishing many of my goals. Why am I able to live my life and have so many accomplishments, when there are so many patients who don’t have the same opportunity? Am I wrong for writing about my success and sharing it with fellow patients and their families? I discuss my feelings in better detail in my blog post Medical Trauma: Guilt vs. Thankfulness.
Fear of the Future
Jennifer: Something that a lot of people do not realize is that surgery is not a cure. In fact, Jared and I will never be cured. The heart valve I have currently will not last me forever, so I will need a valve replacement every 10-15 years for the rest of my life. There is no guarantee that my valve will be replaced via transcatheter, there is always a chance I will have another open-heart surgery. The possibility of facing another surgery is not always easy to accept. Likewise, Jared fears what will happen to him as he grows older. He often thinks about receiving a heart transplant and worries about the outcome and process of such an event.
Stay tuned for part 2 of Jared and Jennifer’s blog post next week!
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