Pandora's Box (gastblog)

Nog geen twee weken nadat ik hoorde dat ik het Brugada syndroom heb, kwam ik op de blog van Alicia (Brugada Girl). Alicia beschreef het dreigende gevoel van het dragen van een ICD. Als het zwaard van Damocles. De herkenning is groot en daarom deel ik (met haar toestemming) haar blog.

The definition of opening Pandora’s Box; ”to open Pandora’s box” means to perform an action that may seem small or innocent, but that turns out to have severe and far-reaching consequences.

Ever feel like this is Brugada Syndrome?? I do. I went to the doctor for palpitations and fluttering. My EKG was abnormal but it always was and no one said anything about it. The EP suggested a genetic test. Seemed scary but he said it was unlikely so in turn it felt small. It felt like a small, minor decision that I was doing to cover my back not thinking what if it DOES come back positive?? I threw the lid off the box, thinking I might get a simple, small answer to my palpitations and all will be solved with a prescription.

Well you all know the story. It was positive, my EP feels cardiac arrest is imminent, there is no pill and no cure. Just a pesky little device to start my heart again if it should stop, that may possibly run amuck on accident and kill me instead of Brugada.

Some may say this is great news! I just saved my life! I will live long! I won’t end up like my father! Im lucky, the answer to my prayers, a second chance, blah, blah, blah. But what about the consequences of knowing this knowledge?

Maybe knowledge isn’t always power. Maybe ignorance is truly bliss? What am I talking about? Is it good quality of life to walk around knowing a shock or cardiac arrest is imminent? Is it a peaceful life knowing the same ICD that may save you has MANY risks to actually having it in the first place??

We all walk around with that fear. You know you do! We all wonder when that moment will arrive….what if we are driving? What if we are with our kids? What if we are walking on stairs? What if we are near something hard and pointy that would cause a catastrophic blow if we fell unconscious on it? With every breathe and every step we wonder and wonder and wonder. What if now? what if later? When will it happen? Once again, is that quality of life?

We saved our lives but are burdened with the ‘what ifs’ every day of our life. Sometimes I wish I never went to that appointment or got that test. Thats silly talk right? After all, that appointment diagnosed me and saved my life. But yet, it gave me knowledge that a shock or arrest or VFib or a faint or fall is around the corner ready to pounce on me.

People may say “so what? you will be alive!” Will I? What if Im driving and hit a pole? What if I fall and get head trauma? Its happened!! What if it dislodges a lead??

Okay, Ill stop. I don’t want to scare all my readers away lol! But I know you all understand what Im talking about. Your happy you know about Brugada because you’ll live but you wish you didn’t know so you didn’t have to endure fear and anxiety everyday.Its a love hate relationship. Maybe we should have left the lid on that damn box!! Maybe not….