Me: I have Brugada Syndrome
Them: Bru-what?
Me: Brugada
Them: Oh you mean Borgata, the casino in Atlantic City?
Me: No! I mean the congenital heart defect
Them: Stunned yet confused look then….never heard of it
Thats the usual conversation I have when I tell people about my new diagnosis. Its ok, I understand. When my doctor told me, I said the same thing. Well, minus the casino part but I did see the nurse type it in my notes as Borgata!But I too said “Never heard of it” Anyhow, if your reading this Im assuming you have Brugada or you know someone with it. There is not enough information out there that people would automatically know what it is. Its a rare heart defect. Its been around awhile but was discovered and named by the Brugada brothers only in 1992. Through my whole journey, which just started, most people, including lots of medical staff, never heard of it. Its not in textbooks,at least not older ones. There arent famous people speaking out about it. There isnt a Brugada Awareness Day on a calendar or a yearly marathon that raises money for research or a cure. Its just a congenital heart defect that is FATAL and RARE.It lurks in the shadows, quiet and unknown until it hits a family member or you. ‘Well what is it ?” “What does it do?” Its an electrical problem. In the simplest form I can describe it, because Im just a house wife and mother, not a scientist or doctor, its a defect in the sodium channels in the heart that help facilitate electric. Electric makes your heart beat in rhythm. Without proper electric, it speeds up or slows down. In the case of Brugada Syndrome, shortened usually to BrS, it speeds it up into ventricular fibrillation, which in turn leads to cardiac arrest. “Oh you mean a massive heart attack? Sudden death?” Well yes and no. No, cardiac arrest is when the heart, from lack of electric just stops. Its not a massive heart attack which many people confuse with cardiac arrest. Its not a heart attack at all.I dont even think there is such thing as a massive heart attack.Anyhow, a heart attack is a lack of blood and oxygen to the heart, painful and the person is aware its happening. Cardiac arrest is when the heart stops, the person drops. Plain and simple. No awareness, no pain, no nothing. Lights out! Nighty nite! Black. Yes, this is a dismal subject. “Why start a blog this way?” Because this is my new life. “Wow! You died?” No I didnt die…yet. But my father at 55 died suddenly. That is how I know about all the differences of heart dysfunction because I scoured the internet for years trying to figure out what happened to him. I wanted to now if he suffered. I wanted to know if he was in pain. I researched and read and read some more. Anyhow, Ill save my fathers story for another day. Its a very long story between his death, my symptoms, my road to getting a diagnosis which many doctors screwed up. I got an answer just recently and had an ICD implanted. “I know lots of people with pacemakers!” Its not a pacemaker. Its a defibrillator. “Like on the show ER when they shock you with paddles?” Yes, yes. Something like that. Its a jump start to my heart if and when, and most likely at some point, will try to stop and go into cardiac arrest.As you can see, there is alot of info here, alot of ground to cover. I cant go into all of it at once or talk about my past journey or the one laying ahead of me in one full swoop This isnt a research paper, its my life. Many peoples lives. I want a place to share my experiences. I want people to read and share their own. What bothers me most about this diagnosis is AWARENESS!! It sucks having something no one heard of. It sucks having your loved ones die from something no one heard of. I want Brugada to become a house hold name. I know that sounds silly but you know what I mean. I want people to know it, research it, be aware of it, get themselves tested, know the warning signs, keep up with heart health, etc.So this blog is a place for me to bring awareness, a place to talk about my experiences like a diary for the world to see, a safe haven for other BrS patients or loved ones of BrS patients to find a place to share or learn. Point blank is Brugada is a very serious heart defect that steals people lives from them with no warning. Absolutely no warning. You go fall unconscious and you dont wake up. You fall down where you stand or sit in cardiac arrest and take your last breath. You say good night to your family and die in your bed. “Oh boy melodramatic” It isnt. Its the truth. Its Brugada. Its frightening, people died from it, people live with it. I live with it and a machine in my heart will keep me going , renewed my lease on life and I want to share it….
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