By Kim Russell
29 Sep

An Impactful Change

Thursday, September 29, 2016

Have you ever considered the impact that the Adult Congenital Heart Association (ACHA) has had in your life? The true support they have provided for you as an adult with congenital heart disease (CHD)? Before writing this blog, I had never truly thought through how much ACHA has changed my life and that of my family. Thank you, ACHA, for all you have been to me for the past twelve years. Thank you for the experiences and friendships I have had because of all of you!

You see, for the first 44 years of my life, I only knew three other people with a CHD. We had met two other families whose child had CHD, but both children passed away at a very young age. There were so few children who lived past the age of five. Besides that, it was just my family and I going through this CHD journey. But, because we didn’t know anything different, we accepted this is as “normal”. But in 2004, the experience of going to the ACHA National Conference forever changed my life! What an incredible joy of emotion my heart felt when my husband, Tom, and I walked into the room of over 50 people who shared my story of growing up with CHD; people who truly understood what I had been through. I had never before realized how “alone” I truly felt through the years. Being able to spend a weekend with other adult CHDers was incredible.

When we got home from the conference and started sharing the stories we had heard, my parents were amazed and very thankful that I finally had met other adults with CHD; people who could best relate to where I had been and maybe influence the journey of what was ahead. They were very interested in stories we had heard from other adults. Then they wanted to hear about the actual organization and history of the ACHA. At the time, they were able to help by making donations, but, when they “retired”, they began getting involved in our work of bringing ACHA information into our local community. They will do anything to help from helping assemble give-away bags for an event to helping with the activities at the Congenital Heart Walk of Greater Atlanta.

However, ACHA played an even more important part in helping us see why my husband’s family was indifferent about our CHD journey. I was one of those patients that said - “Oh, I’m fine!” - when asked about my heart health. I would dismiss interest because I didn’t want it to be a big deal, but I never realized that I was robbing them of information. When they asked how I was doing, my answer was the same - “I’m fine!” So why would they show any further interest? If “I’m fine”, then I don’t need support or help. I’m not different than anybody else, but one day, while reading one of the ACHA’s brochures, a light bulb went on in my head! Tom and I had never truly explained congenital heart defects and my particular anatomy to his family. They had no idea how truly serious it was and how it impacts my life at home. Whenever they saw me, I was up and active and saying - “I’m fine”. How would they know anything about what was going on?

Using ACHA information and brochures, Tom and I started educating all of them. We taught them about my particular defect, whatever statistics that were available at the time and that there was no way to predict what the future held, but most of all that CHD was not a silent message of “early death.” The more we talked and visited, the lower the wall of uncertainty became. What a disservice my silence and my - “I’m fine” - reply was to all of them. They have become some of our greatest supporters. Not only do they make generous donations to ACHA and the Congenital Heart Walk of Greater Atlanta, some of them are even able to come and help with registration at the walk event. My sister-in-law has also gotten involved at our local heart camp by offering Yoga exercises to our heart children and adults that are interested. What a blessing and encouragement they have been to us and ACHA.

So you see, ACHA has improved and extended the lives of adults with congenital heart defects on a national level, but truly the impact of their efforts is very personal. They make a difference to many in many ways. Perhaps ACHA has made a difference in your life. If not, you need to get involved and learn more to truly enjoy all the benefits.

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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.

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