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/
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.