By Kim Russell
21 Aug

When I Finally Met People With CHD

Thursday, August 21, 2014

While recently visiting with a social worker at an ACHD clinic, I found out that there are still adult CHDers who have never met anyone else with CHD. I remember that feeling. It wasn’t one that was talked about or that I verbalized, but it was one that was forever in the back of my mind.

“Am I the only one going through this?” “Wouldn’t it be nice to have someone to talk to who understands what this is like?”

Now, don’t get me wrong. It is not something that overwhelmed my feelings or that was continually “woe is me,” but like any other situation in life, going through life not knowing anyone did make it challenging in some ways. Our CHD “clinic” was one doctor’s office and trust me, there was not a line of patients waiting to go in. I never saw anyone else with CHD.

Then one day my CHD cardiologist set me up on a blind date to meet one other person with CHD. It was nice, but do not try this at home! It was years, one husband and one daughter later that my new cardiologist kept encouraging me to join this new group called the Adult Congenital Heart Association—a group of adults with CHD were banding together to promote CHD awareness.

It took a couple years of talking to me about the group before ACHA was having a conference at Rochester, MN, in 2004. I would be able to extend my heart check-up into a long weekend and attend. “OK, I’ll come and check it out,” I decided.

Oh my goodness! Attending the conference opened my eyes to realize that now there was a whole new world of CHD filled with people just like me who thought they were alone. What a blessing to stand in a room with 150 other CHDers, who understood my feelings and experiences! It was validating and encouraging to meet so many!

And I love them all! Through these last several years, I have become very involved and have attended every conference since. Amazing, amazing! CHD awareness and research have become my passion. To help others with CHD—especially to network and introduce adult CHDers to each other—is an incredible opportunity. Hand in hand, we can work together to support those living with CHD!


Add yours below.


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.