First blog entry

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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13 Comments (+add yours?)

  1. Ronda DW Hicks
    Jun 06, 2017 @ 22:57:37

    My name is Ronda and on April 19, 2017, I had a cardiac arrest in my work place!!!!! I fell like a tree in the forest. I have always felt like I had a rapid heart beat, night sweats, but doctors said I was fine. Abnormal EKG 20 yrs ago and dI’d a stress test-nuclear. No family history of heart disease.By the Grace of God I survived….was in medically induce coma and placed in hypothermia for 2-3 days…..fast forward was diagnosed with Brugada syndrome and had an ICD implanted….Tough diagnosis, now I must have my 29 year old son tested, he was just married…50% chance he has it.
    Society needs to be educated…SCA is NOT a heart attack.

    Reply

  2. Crystal
    Jun 26, 2015 @ 19:49:42

    So, reading your stories I have some concerns. My grandson that is 16 years old and also autistic had some gent if testing done and they said he had brigade syndrome. We have a strong family history of heart diese ….never the same diagnosis ….everyone goes to a different doctor. But since my grandson had his diagnosis it all makes since!!!! My moms dad (my grandfather) died at 33 years old and his son (my uncle) died at 35 years old, both with massive heart attachs. That’s all they could tell us. My mom, my daughter and myself have different diagnosis as I said due to going to different doctors. The main thing they say is tachycardia, because are heart rate is so fast. How do I know if it’s brugata syndrome? I’m a little concerned now and want to either know or rule it out. Should I get the genetic testing done? Thanks for your information you have shared. I can’t wait to send it to my daughter. Please help me with any information that might help.
    God bless.
    Concerned mawmaw.

    Reply

    • AliciaB
      Jun 27, 2015 @ 09:56:22

      If there is someone in the family with a positive genetic test, I would absolutely get a genetic test for you and all family members involved

      Reply

  3. Erica Haak
    Mar 28, 2013 @ 03:16:12

    Hi there!

    My name is Erica. My son was diagnosed with Brugada when he was 4, 2 years ago, and I have just found out that I too have BrS. My son has proven to be symptomatic an has had an ICD implanted, but the dr tells me that I would have more chance of something going wrong with an ICD than dropping dead. I dot know…. I’m pretty worried, hey!! I am a mum of five and HAVE NO INTENTION of leaving them early!!!!!! We are going thru DNA testing at the moment as there is a 50/50 chance for each of them having it…argh!!!!

    I know extactly what you mean with the doctors etc – NO ONE ever knows what I’m talking about! I tried to donate blood today… “Sorry, what is it again… What does it do?” Grrr!!! Long story short, I have to get clearance from my cardiologist to give blood.

    It’s so GOOD to just chat to someone who knows what I’m talking about… And it sounds like you are just like me – REAL. It does sound horrific, but IT IS the truth! We’re talking about one minute here, the next… Just gone! Scares the crap out of me for both my son and myself!! Altho my son should be right with his ICD. There have been a couple of problems with the device, but after 3 surgeries (poor little man), we think we have it all under control. He also has one of those machines that hook up to your phone line and send reports from the device in to the diagnostic centre at our local hospital – will run a report if a lea lead fails, battery gets low etc. I just wish I had some of that assurance!!! Mind you, I am not symptomatic, as I said. I just have a BrS sign on my ECG.

    Anyway, so great to chat without having to explain myself!!

    God bless!
    Erica

    Reply

    • aliciatburns
      Mar 28, 2013 @ 08:44:41

      Im so sorry to hear about your son. But thank God he is protected with a little guardian angel now in his heart. You and the rest of the family are being tested? Has anyone had a drug challenge to diagnose Brugada?

      Its very scary to have it and NOT have an ICD. Im still trying to make friends with mine but at least I know Im covered in the worst case scenario.If you are uncomfortable with the fact that your not being considered for an ICD, by all means, see another doctor. A second opinion doesnt hurt.What have they done to diagnose you….EKG, genetics, drug challenge, family history?

      Next month Im making an appointment for all my kids to start the diagnostic process. I’m not looking forward to it. Very scary!

      Reply

      • Erica Haak
        Mar 28, 2013 @ 17:04:19

        I have a type 2 ECG which, with the family history (my son), is apparently enough to confirm that I have it. Being a-symptomatic and with ‘only’ a type 2 pattern, I wonder if it is possible that I may just be.a carrier of that gene???? But I HAVE to make decisions assuming that I just have it, full stop. I haven’t had the chemical testing, neither have my children. We are going thru the genetic tests now… Should have those results in early may. I wore a heart harness for 24 hours, and those reports showed that i have an exceptionally perfect heart beat – didn’t skip a beat. I am very aware though that BrS doesn’t show up on each and every ECG, so altho i should be relived with those results, it doesn’t change the fact that I have it. My cardiologist has advised me not to do any excessive exercise, which was a little confusing as, from my research, BrS usually manifests whilst at rest or asleep?????? I thought maybe it was that he just wanted me to have a steady heart beat so to not aggravate my heart into a bad rhythm????? Not sure.

        Have you been symptomatic??? It’s because I haven’t been that they don’t suggest an ICD, but the dr has told me if I have just ONE faint with fever, or just in an unusual circumstance, that we would be talking about having the ICD implanted….. Which of course brings more worries – the risks of one of those!! Grrr!!! My thoughts constantly go between “trust the doctor” to “JUST GIVE ME A DAMN DEFIBRILLATOR!!”. I think I have to trust the doctors, but gosh, I just have to pray that that one faint isn’t the one that kills me!!!!!!!!! He has advised me that when/if I have a fever, I need to be admitted to hospital for monitoring, so at least I’ll be in safe hands at my most vulnerable times I guess.

        My son has been shocked a number of times, but only thru faulty wires as not having it set at appropriate setting. He ran to the park once… Not far at all… And the thing zapped him three times!!!! Poor kid! But all that is sorted now, thank goodness!

        Because you don’t know me, you will probably think i have written quite depressingly… it sure does read like that!!! But i’m actually doing pretty well with it all, just saying it how it is! The truth is not always pleasant or easy to take, hey?!! Great to chat to you!

      • aliciatburns
        Mar 28, 2013 @ 18:09:11

        Brugada is diagnosed differently by many doctors because its so new and rare. Each doctor seems to have a different reason to say yes or no on the defib. Brugada is a puzzle.They need several pieces to see a clear picture even if all the pieces arent there. The more pieces the more sure the diagnosis.I am guessing they are waiting on your genetic test or doing a possible drug challenge. ICDs do have down falls, I went through that after I got mine. But after researching I realized ALL surgeries and devices have risks but the risks dont out weigh the alternative which is death. I have no symptoms like fainting or previous episodes of cardiac arrest. But I DO HAVE an ever present Type 1 EKG, my father died young, his mother had cardiovascular collapses and her cousins died in their 40s. Genetic testing is about 30% accurate and I came positive back for that. So all those pieces led to a diagnosis and ICD. They offer an ICD based on the probability that you might die from it. Being my father died, a few distant cousins and my grandmother had collapses where she was unconcsious but not quite in arrest, they feel the probability is high and gave me one.

      • Erica Haak
        Mar 29, 2013 @ 17:13:52

        Oh gosh, yes that is a very strong family history! I would have definately said yes to an ICD in your case!!!!!! Apart from my son, I don’t know of anyone in our family that has died suddenly at a young age. A few months ago, though, my Aunty (on my dad’s side) started fainting, like multiple times a day. It seems to be when she is calm, not when she is active. When I heard this news, I contacted her straight away – if I find strong family history, that defib will be going in for sure!! But her cardiologist doesn’t think it’s BrS. It is definately an electrical problem tho…. I still wonder if its somehow related. I got her to send me a copy of the cardio’s report, and I will send that to mine and see what they say.

        I totally agree that the benefits of the ICD outweigh the possibility of death…. I guess I’m just scared to not take the advice of the dr… like you, i am no doctor – im just doing my own research. Someone did advise me that if I was insistent then they’d give me one…. Hmmm…. Something to think about.

        What about your children – what tests will your dr be giving them? An ECG is the only test they have given my children, but as it doesn’t always appear on each and every ECG, I really don’t think it can be ruled out that simply!!

        I have been advised that the DNA testing is likely to come back with results that aren’t going to help…. But my fingers are crossed that they come back positive so I can test all the other kids, and my extended family.

        It’s the not knowing that is the stressful part – I think once I get definate answers, particularly with my children, the emotion of it all will settle down and we can just get on with living life without these concerns!!!! I hate that this thing has changed us; it has limited us in a few areas of life, changed the way people look at my son etc…. But I am determined that we are going to live full, happy, adventurous lives! BrS has only made our story more interesting, that’s how I see it!!!

  4. Mom
    Mar 21, 2013 @ 21:43:39

    I love the beginning. You made me laugh. I am so proud of you and I love you do much.

    Reply

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