“Excuse me, I overheard you talking about ventricular tachycardia and having surgery, can I hear more?”
Tears streamed down my face. The first session of the 2014 Adult Congenital Heart Association’s National Conference had just ended and already I had the waterworks turned on full force. A cheery blonde haired woman had approached me when she overheard me share briefly about where I am in my heart journey to someone in my row. She wore a little heart pin with a zipper glued in the middle.
“Well, I think I might need a defibrillator and I’m really scared about the whole thing.”
“I have a defibrillator!”
“Yes. It’s scary as shit, but I am so thankful I have it. Let me introduce you to some people.”
Kristen, like me, is an adult living with congenital heart disease. We both have journeys. We both are on the cusp of a medical frontier.
I have Congenital Heart Disease (CHD). It means I was born with a structural heart defect. One of the great misconceptions is that once a heart defect is treated with surgery, the patient need not worry about another intervention. Many many patients are under the assumption that they are cured.
That was me. My first surgery was at 11 months old and I even have a piece of paper from my pediatrician saying I was home free with my heart.
That’s a lie.
Congenital Heart Disease is just that – a disease. It needs life long attention. I needed my second intervention 27 years later, and because I now have the knowledge to follow up regularly with my Adult Congenital Cardiologist, they were able to catch a dangerous heart arrhythmia that is most likely an effect from scar tissue in the heart.
I will go in for testing to see if I need a defibrillator implanted in my chest with wire leads directed into my heart to deliver a shock if I go into this dangerous arrhythmia (ventricular tachycardia).
One of my biggest concerns? Those stinking leads. They typically last about 20 years. It’s really not a problem for most patients with them because they are older – in their 70s. But I’m 31. What happens when I’m 51 and need new leads? The surgery to extract them is incredibly risky and there are very few surgeons that are skilled enough to perform the task.
That’s the problem with Congenital Heart Disease. There is little research because until now, many CHD patients didn’t survive into adulthood.
But now we are surviving. We are a new frontier. My heart care is blazing a future for the one in 100 babies born with a heart defect every year. With more research twenty years from now there could be a solution to this lead problem – and that’s the tip of the iceberg!
We need more research.
We need research so River can continue to have a mommy.
We need research so children with CHD can have a full life.
We need research so everyone with CHD can have quality of life.
Did you know there is only $1.64 of advocacy dollars for each person with CHD?
You can help.
I am participating in the Congenital Heart Walk this Saturday, September 13th. I’d love for my friends and family to be a part of increasing advocacy dollars so more research can help people like me live longer healthier lives.
Would you consider being a part of my team?
I’m looking for 20 individuals to give $10-$25.
You can donate here : Lauren’s Congenital Heart Walk Page
Thank you so much for even reading this – that’s a huge step in creating awareness, and for that, I thank you!