Marilyn is a CHD pioneer, witnessing the progress of cardiac care over the course of seven decades. A true marvel, Marilyn has lived an amazing life, full of ups and downs, but never losing hope.
Have you ever tried explaining what it’s like living with a Congenital Heart Defect (CHD)? It’s like explaining a roller coaster ride to someone who has never ridden one. It’s impossible because everyone’s experience is different. Living with CHD is like riding a roller coaster. Besides going up and down hills and around a curve or two, it comes with a mix of emotions and unique feelings that aren’t the same for everyone. Some people describe a roller coaster ride with words like “suspense,” “fright,” and “excitement.” For me, the CHD roller coaster also includes expressions like “unknowns,” “apprehensiveness,” “challenges,” “joy,” and “hope.”
Here is what these descriptive words mean to me on my CHD ride:
Suspense – what kind of a report am I going to get from my adult congenital heart doctor, whom I see on a regular basis
Fright – not knowing how the test is going to be administered
Excitement – When my doctor tells me I’m good to go for another year
Unknowns – I had a lot of unknowns during the first 24 years of my life. Although medical technology wasn’t available, my parents took me to the doctor in hopes of a ‘fix.’ They always heard “There’s nothing we can do. She might live to be a teenager.”
Apprehensive – being told I need another surgery or invasive test
Challenges – keeping active and eating healthy. This has been a focus of mine for over 30 years.
Joy – marriage, the birth of a child, a career, finding others with CHD, advocating, volunteering
I’ve been riding the CHD roller coaster for over seven decades. I’m thankful to have lived and witnessed the miracles of medical technology, from hearing, “no heart surgery available and there is nothing we can do,” to hearing, “we can fix your valve now via a catheter.” Now that is progress!
I leave you with one last important expression from my CHD roller coaster ride:
Hope – Never Give Up!!
Marilyn lives in Justin, Texas with her husband of 54 years and has one son. Born with Tetrology of Fallot, she has had 6 procedures, 3 heart surgeries and 12 heart caths. Marilyn is 75 years old. She is thankful to have lived, experienced, and witnessed the miracles of modern medical technology.