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!!

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4 Comments (+add yours?)

  1. carla di giorgio
    Sep 01, 2013 @ 14:45:57

    Non preoccuparti Alicia…. so che la traduzione e’ difficile…. sei nel mio cuore. CARLA.

    Reply

  2. Anonymous
    Sep 01, 2013 @ 13:47:00

    So che ci sono problemi con la traduzione…… non importa, sei nel mio cuore e continuero’ a seguirti quanto possibile. Cari saluti e affetto. Carla.

    Reply

  3. carla di giorgio
    Aug 15, 2013 @ 14:31:12

    Cara Alicia, sono Carla, ti ricordi, la mamma italiana di bimbo di 12 anni con brugada?
    ho visto la tua foto e sei cosi’ bella, seguo la tua storia e mi rivedo moltissimo nelle tue parole….. sai , il test genetico del mio bambino e’ arrivato e esito e’ positivo: mutazione riconducibile a brugada. Hanno fatto test anche a me e esito e’ positivo: alterazione identica a bimbo…. ma non si capisce molto… non sanno dire perche’ niente si e’ mai visto, vita normale. gravidanza e parto normali, …nella mia vita ne ho passate tante, tantissimo dolore che mi ha spaccato il cuore eppure sono viva.
    Sai Alicia , nella mia famiglia da parte di mio padre sono morte 4 persone per brugada; 2 maschi e due femmine, uno zio di 26 anni, una zia di 33 anni, il figlio di questa zia di 39 anni e infine , una cugina di 23 anni, in base alla storia famigliare e all’elettrocardiogramma hanno impiantato il mio bambino di icd.
    era il 4 febbraio 2013 e da quel momento la mia vita e’ come sospesa e sto studiando tantissimo per conoscere il piu’ possibile di questa malattia ma troppo poco si sa.. parlo con tutti i dottori e ho contattato anche i dottori Brugada , dottori da Stati Uniti e giappone hanno contattato l’ospedale dove bambino e’ stato operato… ma il mondo non sa quasi nulla di brugada.
    Ora io dovro’ fare visita multidisciplinare per capire cosa fare e le mie due sorelle dovranno fare test genetici e pio, eventualmente anche i miei due nipotini di 9 e 5 anni.
    Sono confusa Alicia ma sono determinata e decisa a stare vicino al mio figlio , sono l’unico genitore che ha perche’ il suo papa’ e’ volato in cielo quando lui aveva 10 mesi…. un incidente stradale…:(
    E’ difficile per me e non ti nascondo che non ho piu’ lacrime ma guardo mio figlio e in lui trovo la forza di sorridere e di vivere … voglio che sia felice e voglio vederlo spiccare il volo verso il suo futuro… ti abbraccio forte Alicia e bacio i tuoi figli. Love.

    Reply

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