The Hurdles of Brugada

I am pleasantly surprised every day with how many people message me on Facebook and Twitter with their personal stories. And alot of them have the same question and concern…when will we accept it? Its not just the patients themselves that contact me but also their spouses who are scared to death of losing their loved one because they almost did.Thats not surprising either being a new study came out that said the spouse of a person who has an ICD is more anxious than the person who has the actual ICD.Anyhow, they want to know when will they accept their diagnosis and the fact that they have an ICD in them and will, forever more. This is the million dollar question. And its a difficult one for me to answer because I was only diagnosed in February and got my ICD in March. This is all new to me as well! I just became a “brugada guru” because I need to understand whats happening to me, what will happen to my children, and my biggest driving force is figuring out my fathers death. He was alone when he died and I became obsessed with whether he had pain, did he know he was dying, was he scared, etc. I set out to learn everything I can. Ive emailed experts from all over the world to the point that I felt like I can be charged with harassment lol. I follow hundreds of doctors on Twitter who luckily converse with me about Brugada. I read medical journals that are accessible. I can go on and on with how much time and effort I put into understanding this demon that plagues my family. Anyhow, whats my point? My point is I may seem to know alot but I am also newly diagnosed and struggle to find the answer of acceptance. It is the greatest hurdle we endure.

Brugada doesnt have many physical limitations besides avoiding activities or items with high amounts of electric and magnets, watching how high your heartrate goes, and keeping note of what feelings/symptoms you have to notify your EP about. There isnt much pain or fuss or pills with this defect. There isnt a million doctors visits. ITS ALL WORRY! ITS ALL MENTAL! When is the next shock? What if it doesnt work? How much will it hurt? What if I really die over and over? How will all these shocks affect my heart muscle in the long run? Can I exercise? What if Im shocked while driving? What if my kids see it and are terrified! What about lead fracture? Will I get electrocuted to death? Who else has it? Will they get an ICD!? Will they find the gene responsible? And on and on and on….Am I right?

So the biggest battle is calming the mind. My method is my faith and Catholicism. Others have different methods. Just know your safer than you were before. Brugada is most deadly in rest, not activity. You can control your heart rate to avoid inappropriate shock.A lead fracture or near fracture gives up signs to your EP that they may discover before its an issue. Nobody wants Brugada.Nobody wants an ugly ICD bulging out with a scar. Will you ever fully,fully accept it? Maybe not. Nobody wants to be sick. I think you get more to a point of acceptance that you dont think or obsess about it. You carry on with life and live. YOU GOT AN ICD TO LIVE! NOT TO WAIT FOR DEATH IN FEAR! You will accept this is needed and be damn happy you have it because there are people who werent given that option, like my father. The real acceptance is not being happy or OK with your diagnosis. The real acceptance comes with feeling safe and feeling lucky. It will come and go and some days will be happy days and other days you’ll be pissed. Its all fine and normal. Give yourself time. Give yourself a chance. But most important LIVE! LIVE! LIVE!!

A Poem from the Heart

This is a poem written by me when I was diagnosed. I put the conversation between myself and the electrophysiologist in a poem

Brugada Girl ™

You are positive for Brugada he said with regret one gray day
How you know and love life now, I promise, is how it will stay
I dont believe you and looked on with teary disbelief
Do you think its as simple as turning over a new leaf
This morning I was healthy and now betrayed by my own heart
You say just walk out with the “news” and make a new start?
Yesterday was full of hope and today life has changed forever
But this little computer will guard your life because its ever so clever
I dont want this, didnt ask for it, cant you make it go away
You were born with this, a flaw, a mutation within your DNA
No medicines, no cures, no vitamins to keep me safe and alive
No but you can dance, ride your horses, go to the gym, and drive

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