My Son Has It

I found out yesterday my 7 month old sons genetic test is positive. Im devastated beyond words. That means 3 of my 6 kids have the gene and potential to develop symptoms. Exactly half! Exactly 50%. I don’t have much to write because Im very upset but I know all my readers have been waiting to see. I am especially scared right now in virtue of him being a male because it is much more fatal in men. After all, my father isn’t here, is he?…

Brugada Makes You Mental

I have to say hands down , when people contact me about BrS, it almost never has to do with the physical aspects of this syndrome. Id say 7-8 times out of 10, its about coping, anxiety, depression, etc. Does the medical field realize this? Or care?

Its just something I want to bring up quickly. There isn’t much to do about BrS. There are a couple of rules to follow and maybe we have ICDs but for the most part, its a “sit and wait” type of life. Wait for a shock, wait for an arrhythmia or worse. There isn’t a ton of doctors appointments. There isn’t a bunch of tests to run or prescriptions to write out. Its, in all essence, a rather simple syndrome, as long as you don’t die. Save a life and thats about it.

So what makes it so devastating? Besides the fact that your heart is a time bomb with an undetermined timer and countdown on it. Its not physical, its MENTAL. This is something people have to grasp. And most importantly DOCTORS have to grasp. Don’t just throw this diagnosis peoples way and then yawn and walk out. Take a minute to realize what you just told them…”I know you are completely healthy with a normal life, but sorry to say you will drop like a fly at any moment. But hey! It may happen in your sleep and you won’t even know about it so don’t fret!” That deserves a nice punch in the face if you ask me! We have to bear that burden, carry that cross and even worse tell our family members. Talk about walking on eggshells. I walk on them and my family walks on them even more so. Yeah, yeah, I get it…we all have to die someday. I just want to smack people when I hear that. I really do. I know, we are mortal. Thanks bud for that gentle reminder. But for the most part, many people will grow old. Something we might not get the opportunity to do. Most people will have a disease that winds down and slowly and surely takes your life away. You as the patient will get to grasp and cope with it day by day knowing slowly your time will come. Not with Brugada. That is why its so scary. There is no winding down. There is no warning. Picture walking through life with someone having a gun to your head. When will he pull the trigger? Will he ever pull the trigger? Or maybe he will just knock you out with it but you won’t die and will recover. Thats Brugada…walk through life holding your breath and blue in the face.

Now please tell me, enlighten me, how that is easy. How do you NOT have anxiety or mental wear living like that? Anyone that tells you they don’t live in fear is a liar. Ok, maybe some cope better and stopped worrying but rest assured at some point in their diagnosis they were scared to death. Don’t deny it. Brugada can cause arrest of the brain….Life stops, care free living stops, looking forward to the future stops, its like on certain days you are brain dead. Dead with fear. But its not always like that. I can go days or weeks without thinking about it. But I can have periods that it pulls me to the bottom of the sea like an anchor. My point is, please be aware of the mental aspect. Please be aware of the mental strain on your loved ones. And if any Doctors should ever read my blog, PLEASE be aware of this when you nonchalantly tell your patient they have this…

If you would like more insight into the emotional toil please read my other post https://brugadagirl.com/2015/02/15/brutally-honest/

Brutally honest

Isn’t that my calling card? Isn’t that what people love about my blog? That I let you inside my head and read about my roller coaster of emotions without holding back? One of the reasons people contact me is because they say I put to paper, what they are thinking. Some don’t share their emotions. Some are afraid to show them. Who wants to wear their heart on their sleeve? And ironically I am just like that. I am a VERY private person. I don’t have many friends. I only see and converse with family. Im friendly but Im not. I keep to myself. But when it comes to Brugada Im transparent. I show and write everything. Maybe its because its therapeutic for me. Or because this is like a diary. Or because it actually helps other people because Im writing what they are thinking. So here it goes.You may not like it and find it upsetting…

Today is the 2 year anniversary of being diagnosed. And Im hating today. It has nothing to do with the anniversary actually. For the last week Ive had a new surge of anxiety and fretfulness over my diagnosis. It waxes and wanes. Somedays I don’t think about it. And some days Im so sad about it and hate it with a passion. This week I detest it. Ive been thinking about having an ICD. Ive been second guessing it. After all, some people chose not to get one. Some people feel, if you haven’t had cardiac arrest yet, you shouldnt get one. Why? Because ICDs kill people. Yes you read that right. Yeah, yeah, they save. But they give inappropriate shocks, they kill you “mentally” ( try bonding with time bomb screwed into your heart) and now Im reading about how leads are recalled, fail, cause heart infections and you need major heart surgery to remove those leads. That surgery has killed people. Yes, Im in dark dismal mood so if you don’t want to continue reading or begin to be afraid of your ICD, don’t read on. I am being brutally honest.

Brugada kills right? It is lethal? But an ICD meant to save you, kills you as well. Or at least shortens life span and cause a whole rash of potential problems. So whats the damn point? Really. If I don’t have one, Ill die. Maybe. Maybe not. If I have it I may never need it but it can fry me to death? Get an infection? What are we supposed to do? Not get it, you are doomed. Get it you are doomed? Its some sick game of buying time but in the end you are not really buying time are you? I always tell people LIVE YOUR LIFE!! Don’t be afraid. But I don’t practice what I preach. I hate this syndrome. I hate this ICD. I don’t trust it. Its fickle and can either save me or kill me. Throw in the fact that doctors have varying opinions some say I need it some say I don’t. Like it not confusing and frightening enough. You need it! You don’t need it! It will save you It will kill you!. WTF?? Take it out. Turn it off. Anything…

Not to mention the mental aspect. I damn near had a nervous break down buying a Valentines card for my husband. I was over bundled because its super cold in Jersey right now but the store was roasting. I shopped and got VERY over heated right after dinner ( dinner always screws my heart up) My heart was pounding and screaming and I was light headed with no warning. All I can do is think I may pass out right there. I will get shocked in public. Will anyone give a shit? Or will some jerk just record me on their phone as I lay there and put me on their Facebook wall instead of helping. Maybe Im being dramatic but oh well. Its the truth isn’t it? You are at the mercy of strangers in a day and age where most people only care about capturing a picture or video in hopes of “likes” and “shares”. I got to my truck broke down and cried to my husband that I cant live like this. I cant live in fear like this. Only BrS patients know whats its like! Your heart is a stick of dynamite that blows with no warning an it doesnt care what you are doing. I know people who were driving, exercising, sleeping, eating, one went flying in their car into a lake, fainted out cold! Do you know what its like to live that ? Talk about becoming an agoraphobic because you never want to leave your house out of fear.You need someone with you to hold your hand the rest of your life. Or at least tranquilizers. Fear of your own body. Fear of your own heart. Like its a whole other person who will betray you any minute. I felt V tach during labor.My heart sped away and put me on the brink of consciousness and all I can do was cry and lose my vision because its going to do what it friggen wants to do. A runaway train. Old or young, poor or rich, famous or not. When your heart says “Im outta this dump!” Guess what?! There is nothing you can do. You are at its mercy. It controls it all. Yes indeed you better respect your heart because it has its own brain…

Im sure some of you are scared to death now because what I wrote. Im sorry for that. I love helping you all but Im only human, a scared one at that and need to vent. I hate BrS. I hate my ICD. It ruined my life and will eventually take it and I just have to sit and wait…

Quick post about my son…

My son had a genetic test for Brugada. Results are pending and should be in within the next 2 weeks. So far his EKG is fine, which is the usual. As we all know, Brugada tends to get worse with age. Keep my son in your prayers that he doesn’t have the gene. Brugada is much more fatal in boys than girls. Not saying you won’t go into cardiac arrest if you are a girl…Im just saying statistically its always worse in men and more predominant due to ( what Ive been told) testosterone. Ill post back with results. Happy New Year!

A little warning…

Just a little tip for the holiday season and its endless food; over stuffing yourself changes vagal tone which in turn can alter your heart rhythm. Ive talked to people who had cardiac arrest due to a very large meal. So be extra careful with all the goodies. And don’t forget alcohol is on the “do not take” list of meds and substances. Go easy LOL! Blessings to everyone and ENJOY!!!

Email me if you need to…

On this blog many people comment about what I write. I do reply to all comments but Im not sure if you are notified that I answered any questions. I feel bad because I don’t want anyone to think they commented and I ignored them. If you leave a comment in hopes of a reply and dont get a response or notification of a response, please email me. I like talking and helping all my readers:

BrugadaGirl@yahoo.com

Pregnancy…

I just wanted to give everyone a quick update on my pregnancy. I will be having the baby in 10 days so Im at finally at the end. I have to say, Brugada wise, its been uneventful, which is very good. Despite having a defibrillator and Brugada, I didn’t have any arrythmias, no shocks, no need for medicine. With the exception of a higher heart rate, which is the usual for pregnancy, there isn’t much to speak of. My rate has been around 130 but thats not high enough to even have to change the ICD settings. As far as labor and delivery, the plan is a scheduled induction in order to have a calm and controlled environment. Ive seen my regular obstetrician but also a high risk doctor. They all agree I should be medicated because the adrenaline rush of labor from pain ISN’T a good idea with Brugada. I have a scheduled day for delivery where they will carefully and slowly bring on labor with medication. This will all began AFTER they turn the defibrillator OFF. They do not want it on during labor and delivery.Once the baby is born, they will turn it back on. That is about it as far as guidelines. For me, being pregnant with and ICD and Brugada, caused no problems and everything was fine. Im not saying other women who are pregnant with Brugada will all be safe and have an easy time. Every situation and case is different. Im just saying for me personally, it was a piece of cake heart wise 🙂

What do we think about 2013?

Do I hate this year? Am I soooooo ready to see it end? Hell yes! But is it a bad year or a good year? I was diagnosed out of the blue this year and had my ICD implanted. I found out 2 of my children have it and the oldest,18,may be getting an ICD in the near future. I hated the events that happened. I cried more than ever,prayed more than ever,lost sleep more than ever. I had fits of anger,sadness, remorse and hate. It sounds like I am ready to get 2013 over with right?? But then I think….Maybe somehow this was all a good thing. I know I have Brugada, and 2 of my children, which in essence saved our lives. I should be happy about that. After all, who gets the opportunity to see into that crystal ball and do something about it? As much as I hate knowing I have a heart defect and even worse, my 2 children, I can’t help but say “Thank you God” at the same time. Of course it would be better if we didn’t have anything at all lol! But I can’t cry over spilt milk. I can’t change what is the truth. All I can say is Im happy I know what we are up against so I don’t have to lose them and they don’t have to lose their mother. Also, my father died in 2009. I have played out that day over and over for many years wanting to know how and why he died.It was the worse few years of my life…not knowing. But my mother was tested and is negative, solving the long mystery of what happened to my died. Now I have closure over his death. I know it wasn’t his fault. He was a smoker and I felt angry that maybe he brought on an early death. But overall he was healthy. I don’t have to be angry anymore or wonder if he was in pain. I have answers and answers bring peace. As much as I hated the dismal,shocking moments of 2013, its those precise moments that saved lives and provided closure.Do I want the year to continue? NO!!! LOL! But do I detest the year that saved my life and children’s lives? No.How do you feel about your year??

Palpitations and PVC’s

I’ve talked to many of you that are afflicted, like me, with palpitations either all day or just at night. The same goes with PVC’s. For the most part mine are just a nuisance and make me very anxious and uncomfortable. After all, who wants palpitations and an increase in heart rate when you have a defibrillator set at a low shock rate? I’ve been hooked up to several monitors and there doesn’t seem to be any dangerous arrhythmias happening. But that doesn’t change the fact that I have these symptoms all the time. And I know many of you do too.Im a bit tired of hearing that these symptoms we feel are unrelated to Brugada. Can it really be that we all have Brugada and the same exact worrisome palpitations and fluttering and its unrelated? I dont buy that.Doctors may be selling but Im not buying.I feel they ARE related to Brugada. Its just too new of a disease to know everything about it. These palpitations have gotten in the way of my life, my sleep, my exercise and Im sick of it. I finally asked my EP for a prescription to keep them at bay. Even if they are harmless, they concern me.He gave me a calcium channel blocker that I take once a day. It’s a 24 hour duration pill. By the way, be sure of what meds you can and can’t take by checking http://www.brugadadrugs.org Anyhow, the medicine, known in generic form as Diltiazem, has made a world of difference. My heart is quiet and still. My rate doesn’t increase frequently as I am known to have episodes of sinus tachycardia. When I go to the gym I can do more and my pulse doesn’t go as high. I seem to be able to handle a bigger work load at the gym which Im enjoying. Its nice to not be scared of the elliptical lol. At night, instead of tossing and turning with fluttering and palps, I sleep!Shouldn’t I be sleeping at 3 AM? When your mentally and physically exhausted and dying to sleep but your heart feels like your jogging,thats not cool. You cant really fall asleep when your laying down but feel like your running a marathon. Im happy to be on this medication. I havent had any side effects except gastric reflux. Unfortunately this class of meds is harsh on the stomach in regards to acid production but its worth it. I just take Prevacid and eat a bland diet. I know so many of you suffer with these symptoms as well. I want to tell you to not be quiet about it. Talk to your EP. Tell them you are interested in a medication that will setlle your heart and ease your nerves. They will determine whats best for you.Its bad enough we have to worry about a shock. Lets knock down the anxiety a bit by taking care of the harmless problems. Good luck

Pandora’s Box

The definition of opening Pandora’s Box; “to open Pandora’s box” means to perform an action that may seem small or innocent, but that turns out to have severe and far-reaching consequences. Ever feel like this is Brugada Syndrome?? I do. I went to the doctor for palpitations and fluttering. My EKG was abnormal but it always was and no one said anything about it. The EP suggested a genetic test. Seemed scary but he said it was unlikely so in turn it felt small. It felt like a small, minor decision that I was doing to cover my back not thinking what if it DOES come back positive?? I threw the lid off the box, thinking I might get a simple, small answer to my palpitations and all will be solved with a prescription. Well you all know the story. It was positive, my EP feels cardiac arrest is imminent, there is no pill and no cure. Just a pesky little device to start my heart again if it should stop, that may possibly run amuck on accident and kill me instead of Brugada. Some may say this is great news! I just saved my life! I will live long! I won’t end up like my father! Im lucky, the answer to my prayers, a second chance, blah, blah, blah. But what about the consequences of knowing this knowledge? Maybe knowledge isn’t always power. Maybe ignorance is truly bliss? What am I talking about? Is it good quality of life to walk around knowing a shock or cardiac arrest is imminent? Is it a peaceful life knowing the same ICD that may save you has MANY risks to actually having it in the first place?? We all walk around with that fear. You know you do! We all wonder when that moment will arrive….what if we are driving? What if we are with our kids? What if we are walking on stairs? What if we are near something hard and pointy that would cause a catastrophic blow if we fell unconscious on it? With every breathe and every step we wonder and wonder and wonder. What if now? what if later? When will it happen? Once again, is that quality of life? We saved our lives but are burdened with the ‘what ifs’ every day of our life. Sometimes I wish I never went to that appointment or got that test. Thats silly talk right? After all, that appointment diagnosed me and saved my life. But yet, it gave me knowledge that a shock or arrest or VFib or a faint or fall is around the corner ready to pounce on me. People may say “so what? you will be alive!” Will I? What if Im driving and hit a pole? What if I fall and get head trauma? Its happened!! What if it dislodges a lead?? Okay, Ill stop. I don’t want to scare all my readers away lol! But I know you all understand what Im talking about. Your happy you know about Brugada because you’ll live but you wish you didn’t know so you didn’t have to endure fear and anxiety everyday.Its a love hate relationship. Maybe we should have left the lid on that damn box!! Maybe not….

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