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IAmA 21 year old living with Brugada syndome (AKA Sudden Unexplained Death Syndrome) AMA. I've gotten quite a lot of requests recently from when I posted this 7 months ago to check back in and answer some questions...
Picture of my cardiac difibrilator http://imgur.com/F0FMS66
EDIT: HERE IS RECENT PIC OF ME FROM LAST WEEKEND http://imgur.com/MjnLCBx (PS YES I AM ALIVE LOL I WAS JUST AT WORK)
Here is a link to the previous post http://www.reddit.com/r/IAmA/comments/1b2yh7/iama_21_year_old_living_with_brugada_syndome_aka/
WIKI: http://en.wikipedia.org/wiki/Brugada_syndrome
Here is the full story in depth Sorry for wall of text I tried to break it up to make it an easy read!! And Thank you sooo much for the upvotes means a lot to me.
Never gave the guy who gave me gold on it when I originally posted this comment a thank you... SO THANK YOU
HERE GOES: On September 17th 2011, I scheduled a routine check up at my family practice, with my regular physician. This is a routine check up that must occur every 3 months in order for me to be prescribed the Adderall that I, and I'm sure many of you fellow college students take. I mentioned to my doctor that every once in a while I feel faint when I take my pill in the morning. Which for him is an automatic red flag... Although, I later found that this had nothing to do with my condition, and was the result of me not eating before I took the drug, this decision to tell my doctor saved my life. He quickly noted that he was going to take me off of Adderall until I saw a Cardiologist at Swedish Medical Center. I was irritated by this immediately, because for me this meant more time at work missed, and more school work pushed back.
He ran his own EKG (Electrocardiogram) on my heart and found nothing wrong, but insisted that I go see the Cardiologist. I reluctantly wean't to the appointment 2 weeks later, at which point a nurse screened me through a series of tests that did not include an EKG. This was due to the fact that she had the EKG results from my prior visit to my normal doctor.
On her way out to grab the cardiologist she decided that because I said that my grandfather had a brother that died at birth from a heart malfunction, that she would run another EKG "Just because." She ran the test, and walked out of the room after looking at my results and saying "Huh, thats weird." To go fetch the Doctor.
I WAITED 45 MINUTES... The doctor came in and said words that I will never forget. "Mark, I believe you have a condition that I am going to take very seriously. It is called Brugada Syndrome. I know you have never heard of it before, but get used to that name because you will never forget it from this day forward." He was right. This scared me. I stood up and asked for a drink of water. The doctor opened the door, and immediately I had 8-10 nurses staring darts at me as I looked out of the room, white as a sheet. He asked one of them to grab a cup of water, to which 5 of them jumped out of their seats to say "Oh, I will." They were aware of my diagnosis before I was. The doctor told me that I would need immediate surgery to implant a ICD (Implantable Cardiac Defibrillator) into my chest to "Shock you back to life, when you go into Cardiac Arrest." To be told at 20 years old that you can/will die suddenly without warning, at any moment, is a lot to handle to say the least.
After two weeks of wearing a device that tracks my heart rate at all times, 24 hours a day, by a few people who is payed to watch it constantly in shifts across the country in Virginia somewhere. I had heart surgery to implant my defibrillator. What I was happily not aware of, was that this procedure required me to be awake and that they would have to stop my heart twice and allow the defibrillator to revive me in order to test the machine. The doctors told me that the severity of the condition was going to be based upon how easily they could stop my heart. This was after they had confirmed that I had type 1 Brugada (The most severe). When I came back to reality after the drugs wore off from surgery my doctor told me, that my first episode was likely to occur "within the next two years."
To this day, I am shocked at the sequence of events leading to my diagnosis. But what is most shocking, is that no one knows about this condition. I will live each day knowing that at any moment I can die. I also live each day knowing that because of Science and because of God/luck or whatever you want to call it, I have a device in my chest that will bring me back to life. This condition is REAL and it reeps in my thoughts everyday. It is time that we brought awareness to this condition.
EDIT:(For those who don't know what an arrhythmia is, it is a strand of heart beats that can last any amount of time, that are irregular to the heart's normal beat rhythm) In most cases they are not lethal and very short. This is not the case for someone like myself who has Type 1 Brugada Syndrome... There is no cure. It is diagnosed with a simple EKG, but often lies dormant and goes undetected. But with a little 'luck' it will show up on an EKG. The only treatment is the immediate placement of a Cardiac Defibrilator. I want to start by saying that with this story I do not mean to frighten anyone or create a sob and a pat on the back for myself. But I do hope that maybe I can shed some light on a condition that we never hear about. One that is growing in America and we should acknowledge and research.
Short Explanation: A little over two years ago now, I was diagnosed with a heart condition called Brugada Syndrome. Or as it is referred to: Sudden Unexplained Death Syndrome. To give you some insight before I tell my story, I want to give you some background to this condition. Brugada syndrome is a genetic mutation of genes in the heart that, in turn, causes a Lethal arrhythmia. It strikes with no warnings, no pre cursor, no symptoms, other than a positive EKG that shows the arrhythmia. *
I'm expecting a possibility of getting down voted to hell because I posted this 7 months ago, but I have received more and more requests from people to come back and answer some questions. There is still very little awareness about this condition and I receive messages to this day from people who search and find my AMA and ask me for advice. Regretfully I ignore them, however it is difficult still having lengthy messages from people who have family with this condition, or have it themselves 7 months later and not coming back to answer some for a while. I am no doctor, but I have learned a lot from some very knowledgeable surgeons and cardiologists. I would love to revisit this and hopefully gain some awareness to the condition.
markizzo7942 karma
She did indeed, however I'm pretty sure that most nurses in her position would have run that EKG earlier in the visit. 'Just because' is what she said, but what she meant was .."I don't want to explain why I'm going to run the EKG, but I probably should have earlier." haha
KyuubiReddit495 karma
Thank you for posting this, I have never heard of this before.
Does the defibrillator allow people with this condition to have a normal life expectancy?
Can you still workout and have your heart up to 150 or 160bpm or it is not recommended?
braisednostalgia259 karma
They are set with thresholds, typically 185 bpm. Additionally, they have a correlation setting. It monitors your rhythm at 100 bpm and then if you get to 180 and the rhythm is off, you got a fun shock. I don't know about OP< but I can safely work outwith mine, just slowly.
markizzo710 karma
PLayed golf in Phoenix on Friday. drinks and golfcarts, and 300 yard drives... I'll never let that go hahaha
markizzo752 karma
My threshold is set at 35 bpm- and 275 bpm. If my heart rate falls out of that threshold for 12 seconds I get a shock. Yes normal life expectancy is achievable for sure.
bob_loblaws_law_bomb379 karma
OP can die at any moment, answers 4 questions.
Bit worried now.
All_the_Dank290 karma
Hey! just wanted to say I used to be one of those people in 'virginia or some place' that watched your arrhythmia every day, there's an office in Virginia and an office in New Jersey. best of luck to you!
IAmDrDoom45 karma
Being paid to make sure a guys heart doesn't freak out? How can I get that job?
Shivermetimberz69 karma
If you slack off or get distracted, you can be directly responsible for someone's death. Doesn't sound that great anymore, eh?
markizzo75 karma
I had this too!!! Its called a halter monitor. Those people are crazy, they run 12 hour shifts. You heart rate gets watched 24 hours per day. Had to wear one for a few days before surgery.
CrimZin227 karma
Thanks for posting this. I was wondering how it has changed your day to day life. For example, where do you work? Do you need to tell them that you have this issue? And what are they instructed to do if something were to happen. How would your body react?
markizzo7569 karma
In the beginning my life was drastically changed. Beside the initial shock of the diagnosis and procedure, I suffered from some PTS, which came more from how shocking everything was. Now that I have lived with the knowledge of the condition, I am totally fine, appreciating life, and having fun. I work for a real estate advertisement firm now, and yes I make sure they are aware of the condition and make sure the people who are stationed near me in their cubicles, know about the condition as well. I make sure they understand that if anything happens to let the defibrillator do its job and that it will attempt shock me back every 12 seconds. Luckily I sit next to a guy who trained as an EMT at one point... which is pure luck not planned hahaha
ppphhh81 karma
So what happens when your heart freaks out? You have pain, or you collapse, or what? When the device brings you back, do you just get up and go about your day?
I take it this hasn't happened yet, but I assume you know what to expect
PinkStraw103 karma
He may still answer, but I wanted to add my 2 cents. At some point, they were considering giving me an ICD. What they told me was that when you are shocked, it's like getting a donkey kick in the chest and it throws you onto the floor a lot of the time. Some describe it as a hard punch to the chest. Technically if you are okay afterward, you should be fine, but they still want you to go to the ER anyway to make sure everything is okay.
braisednostalgia109 karma
I've had heart surgery 5 times and my ICD has blasted me 8 times; if you ever need to talk let me know; I volunteer as a counselor at the heart camp for my local children's hospital.
KushTheKitten71 karma
Having to confront death so young. What's your outlook on it. What do you think happens when you die and have you made peace with it?
markizzo7222 karma
My outlook on death is that I don't have any idea what the truth is, and no one does. I know that certain things have happened in my life that are incredibly improbable, that doesn't mean that it was god, and it does not mean that there isn't a god looking out. I live to the fullest of my ability that I can, because who really knows what will happen. We would be ignorant to assume we will ever have a definite answer to that question.
_chem_guy_61 karma
Have you considered the possibility of a heart transplant? Obviously it isn't cheap and it comes with obvious risks as well as the long waiting period, but it could alleviate the worries and dangers you face now.
tawnyro175 karma
Heart transplants come with a whole other set of problems, like a lifetime on anti-rejection medications that suppress the immune system, which then makes you susceptible to other diseases. My uncle had a heart transplant in 2000, then died in 2006 from Merkle Cell Carcinoma, which is a very rare cancer found only in people on anti-rejection meds or who have AIDS.
markizzo788 karma
Its an unnecessary procedure because of the effectiveness of the ICD. It is an extremely safe implantation as well. I imagine that it would be effective and that I would not have to worry about the condition ever, but its truly unnecessary.
_chem_guy_26 karma
Very true. How often does it go off and how often would you get the batteries replaced (if they still need to do that)?
markizzo798 karma
They need to be replaced every 10 years(ish). I have not had it go off on me yet. Woot Woot
_chem_guy_30 karma
Haha good! I've got a good friend with one actually. Best of luck and health to you!
markizzo7165 karma
I just live day by day. I don't think about things as much as I used to... Not being able to ride roller coasters is pretty shitty though (seriously some bullshit). I would love to write you some crazy long explanation of change for the positive in my life... truth is I just appreciate life a little more and I am self conscious about bringing it up around people who are my friends, because I dont want them to think I'm whoring my story out for pity. haha
markizzo739 karma
Welp holy crap, I just got to work to see I'm on the front page, I have to get a lot done today at work, but I will be off at 5:00PM PST, to answer everyone's questions, if you look at the original post, you will see that I'm not kidding when it comes to responding to the questions, so ask away and expect a response by the end of tonight, if you question is not answered already somewhere else in the thread.
vita_benevolo33 karma
Has the device gone off yet? Is your ethnic background SE asian or east asian?
I'm a resident training in internal medicine, and just FYI, we are mostly all aware of Brugada in our world! I diagnosed a case in one of my wife's patients last year when she showed me their EKG.
markizzo78 karma
No it has not gone off yet, although statistically it definitely should have by now because I have type 1. I am not SE Asian, although I've heard of it being common there.
PaladinSato1114 karma
The nurse who ran the EKG "just because" saved your life.
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