By Kim Russell
8 Dec

Passing the Heart Torch: Are You Up for the Challenge?

Tuesday, December 08, 2015

As a 55-year-old with a double inlet left ventricle, pulmonary atresia, chronic cyanosis, and recently-acquired pulmonary hypertension, I remain very active in the CHD community, both in Atlanta and nationally for ACHA. A couple of weeks ago, a local hospital called to ask if I would help find CHD adults to be on a panel at a recent teen transition conference. I have helped arrange and have participated in this panel discussion for several years, so I was excited to be a part of it again.

But as our conversation came to a close, I heard the words, “We want to get a panel of younger adults between ages 20 and 30, who have successfully transitioned.” Smiling with excitement, I totally agreed to help, but as soon as I hit the end call button, it hit me. “I am too old! I am too old to help the younger generation.”

At first the thought brought a couple of tears, because participating was always a joy. It is sad to let go of something I loved, because I was “too old.” Then, something clicked! Wow! Whereas my experiences, surgeries, and the fact that I’ve lived this long was amazing to people, those experiences and surgeries can be outdated and may not relate to the children of today.

Instead, there is now a generation of living CHD adults who can better help the CHD children of today. Patients have had the same procedures, experiences and surgeries. This makes them able to relate better, sharing experiences and “helpful hints” about things that I have never gone through.

They are better educated about their specific defects, knowledgeable about lifelong care, pregnancy issues, and self-advocacy, and familiar with a vast number of available CHD resources. It is not that I am “too old to help,” it is that there is a new job to be done.

So to begin this new journey, I challenge the generations behind me to continue learning the details of CHD in the world of medicine, procedures, and surgeries so that you, too, can help the generation behind you! You have many exciting tools that can be used! Some examples are ACHA’s website, educational resources and social media, and other helpful websites hosted by great organizations like the American College of Cardiology, the CDC, and many other CHD-related groups. All of them will be glad to assist you as you learn and lead.

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