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When I Finally Met People With CHD

Aug 21

Posted by: ACHA
8/21/2014 8:30 AM  RssIcon

By Kim Russell

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!

Kim Russell, who is also an ACHA Heart to Heart Ambassador, was born in 1960 with a double inlet single ventricle (left) with pulmonary atresia and chronic cyanosis. At three months she had her first Blalock–Taussig shunt and at age four, had another. Her final surgery was in 1992, at the age of 32. All along the CHD journey, she and her parents knew no one else with CHD. As Kim says, “No one else should to have to grow up or experience any CHD issues alone. We are all in this together!”

Copyright ©2014

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1 comment(s) so far...


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Re: When I Finally Met People With CHD

I also have CHD and would like to get more info about groups I may be able to join for advice and or support

By Daegal Ellis on   8/21/2014 2:36 PM

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