By Misty Sharpe
27 Oct

Expecting the Unexpected

Thursday, October 27, 2016

On October 6-7, I should have been enjoying the warmth of the Orlando sun and taking in a wealth of information on numerous congenital heart disease (CHD) related topics. Mother Nature, however, had other plans in the form of Hurricane Matthew. If you’re like me, a first time Adult Congenital Heart Association National Conference goer, you were extremely excited, and maybe a little nervous, about all that you were going to learn. Now, with the new dates of the conference being June 1-3, 2017 in Orlando, all of this got me thinking about the unexpected as it relates to having CHD. There are those of us who have had complications and issues to deal with our entire lives, but then there are people, like myself, who had surgeries as a child and haven’t had any interventions since. While I’m grateful for that, the following are just two of the reasons I am looking forward to the 2017 8th National Conference:

  1. Pregnancy and Family Planning – My husband and I have talked to my cardiologist at length about this topic. We know the risks of choosing for me to carry our child but we were looking forward to hearing an objective viewpoint on the topic, possibly learning more about specific studies of pregnant women with CHD, and alternative options such as adoption and surrogacy. Even perfectly healthy women have complications while trying to get pregnant and during pregnancy, and as a nurse, I have an even greater understanding of the risks and implications of a pregnancy. Yet, because my heart and mechanical valve have been ticking away for almost 25 years without incident, I want to believe I’m invincible, but I know this isn’t the case. We must make informed decisions in this regard and be willing to live with any unexpected outcomes of those decisions.
  1. End of Life Care and Planning: Look, nobody wants to face their own mortality, but the reality is the life of a person living with CHD is anything but ordinary. We should all gain understanding of how to designate a person to make appropriate medical decisions for us in the event we are unable to do so. In addition, we should take the time to truly think about how much medical intervention we would want should a life-threatening event happen to us. Is there a ‘when’ to go along with that? Only you know the answer to that question. This may be a difficult topic to discuss with family members, but in times of uncertainty and, in some instances, grief, the ability to provide clear instructions regarding your medical care can be quite a blessing.

Why am I looking forward to these two topics in particular? It’s because the conversations to be had following this wealth of information make me face those hard decisions that come from living with CHD. I could skip and frolic along in my naivety, ignoring that voice in the back of my head telling me to expect the unexpected. Does this mean we live life worried all the time about the what-ifs? Quite the contrary. We should live life abundantly and to the best of our ability, however we must be cognizant of the unexpected. Knowledge is power when it comes to people with CHD and their special hearts. I hope you share my interest and excitement about the ability to learn more about what it means to be an adult living with CHD from some of the most brilliant minds in adult congenital care. I am excited to be able to once again look forward to learning about these topics at the 8th National Conference in June 2017!

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