Pandora’s Box

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….

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9 Comments (+add yours?)

  1. Patrick
    Apr 26, 2017 @ 09:55:56

    Lol, i see in these comments you allready met Mirjam, whom I mentioned in one of my earlier reactions today.

    Reply

  2. Patrick
    Apr 26, 2017 @ 09:54:31

    It is unbelievable how everybody truly has more or less the exact same questions, fears and so on and so on…I have least to complain I guess, as i have no symptoms at all… what so ever… yet… As you may or may not know by now, testosteron aggrivates most hereditary diseases. So in men, EKG’s will probably worsen through time.

    Reply

    • AliciaB
      Apr 26, 2017 @ 17:55:46

      I don’t have many symptoms yet but because my father died, I’m full of fear.

      Reply

    • AliciaB
      Apr 26, 2017 @ 17:57:13

      My EKG is presently the worse case scenario. It’s a classic Type 1, all day and night. I don’t have a time where my EKG is normal. So any worsening of my rhythm would be v fib or cardiac arrest.

      Reply

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    Jul 19, 2014 @ 05:28:05

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  4. Mirjam
    Nov 24, 2013 @ 13:12:09

    Oh Alicia, I feel exactly the same! Except, my first shock was on October 5th and from that day on I feel afraid for falling when ICD will shock. On that day I managed to sit down on a chair because I felt dizzy and very strong palpitations. But what if the Vfib/Vtach starts so fast I can’t sit down? 😦
    Do you mind if I share your blog on mine? (In dutch: http://levenmetbrugadasyndroom.blogspot.nl/)
    Best wishes, Mirjam

    Reply

  5. Anonymous
    Nov 24, 2013 @ 13:06:40

    Oh Alicia, this blog makes me shiver! It describes exactly the way I feel right now. 😦 After my first shock at October 5th, my rational and emotional self are seperated. I know I’m safe, but how safe am I when the ICD shocks again? Thank God I felt dizzy and a very fast heartbeat at first so I got time to sit down at a chair.
    The ‘what íf’ still haunts in my head. I think time will calm down my nerves and make my more selfconfident. At least that’s what I’m hoping right now.
    Do you mind if I share your blog on mine? (in Dutch: http://levenmetbrugadasyndroom.blogspot.nl/)
    Best wishes, Mirjam

    Reply

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