A Poem from the Heart

You are positive for Brugada he said with regret one gray day
How you know and love life now, I promise, is how it will stay
I dont believe you and looked on with teary disbelief
Do you think its as simple as turning over a new leaf
This morning I was healthy and now betrayed by my own heart
You say just walk out with the “news” and make a new start?
Yesterday was full of hope and today life has changed forever
But this little computer will guard your life because its ever so clever
I dont want this, didnt ask for it, cant you make it go away
You were born with this, a flaw, a mutation within your DNA
No medicines, no cures, no vitamins to keep me safe and alive
No but you can dance, ride your horses, go to the gym, and drive
But a shock awaits me, like a crystal ball it will tell me when I should of died
And wont you be happy knowing this little ICD held back the tide?
Why on earth would anybody want to know when they were about to meet their fate
Its all irrelevant, we now know whats wrong, do it before its too late
But my children will get it and for them surgery awaits
Not necessarily but get them checked, do not hesitate
But I want to live why do I get a death sentence at 34
Death sentence? With this you will live even more
I dont want a machine invading my body sitting in my chest
But without you will be like your father and also the rest
Do you elect to have surgery, do I get your consent, I need a verbal yes
Do you leave me a choice with my death in my face and forced with this mess
Dont be sad, its what best and now what a long life youll lead
I know this isnt what you wanted but sadly its what you need….

Written by Alicia Burns
A conversation between my doctor and I

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Battlefield of the Mind

Today is 3 weeks since my surgery. I still have some pain, the exhaustion is the worst and hanging on the hardest. But overall, Im doing well physically. I cant use my arm until 6 weeks, no lifting and the exhaustion makes it so I can only do something for about a half hour before Im winded. Taking a shower, a load of laundry, a stack of bills…when Im done I need to lay down. I find myself having to lay down several times during the day to regain energy and I need at least 8 hours sleep to feel even mildly refreshed.But the physical part isnt the hardest. Although the first week and half was living on heavy duty pain medicine because it was that bad.Anyhow, the newest problem is mental. Well its not really new. The battlefield the mind starts with the diagnosis. The anger, sadness, denial, fear, etc grip you very well. But then you switch over to thankfulness it was discovered mode,happy there is a way to live normal and get old, you feel the need to live your life to the fullest because you got a second chance. You get that victory cry like “Yeah!!! Im going to live, I got shit to do and places to go! RAHHHHHHH!!!!” The battle is won! Not really. Then you switch back to “this blows, why did this happen to me?” The fear and anger and resentment is back and winning the battle. I get a good nights rest and wake up to sunny skies and smiling kids and say “I got this! Its a piece of cake” the battle switches back to me winning. And then the dark night comes and the quiet and you stare at the ceiling with tears in your eyes hating it. The battle is back on the other side of the field. Day in and day out, I win, BrS wins, back and forth, back and forth, like a damn ping pong game. Where the hell is the white flag being waved indicating a truce? When does the peace treaty get signed and smoke clears the battlefield? Well its only been 3 weeks so Im assuming its not anytime soon. I keep waking and fighting the fight. I think once Im out of the “recovery” period, the war will end. Right now, while on vacation,I cant do anything. Im tired, its cold, Im down. Im still a patient just resting in bed or on a couch in a new location so vacation isnt changing much. If anything it’s infuriating me all the more because I should be having fun, riding horses, taking walks, enjoying the mountain air but I cant. The terrain is filled with trees broken down and huge rocks. I cant risk falling so sitting by the lake is out because its a very rocky road.Its damn near impossible to get there. Horses are a no go. Walks…yeah right. my shower exhausts me. So I sit here and read my mafia book and have a deck of cards and coffee like a 90 year old guinea. Yes, I called myself a guinea because Im Italian and it doesnt offend me and I can call myself whatever I want. Ok, whats my point, Im rambling. My point is I THINK, the battle will be over when recovery is over. For the next 3 weeks Im still a recovering heart patient. But AFTER that, I can dance, ride horses, garden, cook, clean and be Alicia. Right now Im a patient and I want to be Alicia. I think all this takes time, a lot of mental anguish and time to heal all wounds, pun intended. Im letting my mind hash out all this crap until my 6 week mark. But then I do intend to jump back into life with more fervor and appreciation. Maybe at some point I can love my ICD. Maybe someday I can be like Al Pacino in the movie Scar Face and pat it and call it my “little friend”.LOL! For now, I look at it, hate it, feel like it stole something from me, and the scar makes me feel like frankenstein. I usually see in the mirror a pretty face with nice makeup applied and long dark hair and a nice figure. ALL I SEE is this DAMN SCAR! I know it will change. Ill get used to it.It will take time. How much time I dont know. The white flag indicating peace and truce WILL wave in the air someday. But not yet…

2 week post op

Im on vacation today for the next week. Im about 2 1/2 weeks post op and its ridiculous that Im here. Im glad Im here but it was a stupid idea to go so soon. Long before I was diagnosed, when my life still had some semblance of normality I planned a huge vacation to Kentucky with my family because we are horse lovers. It was in place for months and my kids were ecstatic. Fast forward to February 15, the day after Valentines day, when I received my diagnosis. Talk about a shit Valentines Gift. Ill get to that another day. My doctor felt Kentucky was too far and in general didnt seem too keen on the idea of a vacation so soon after surgery. But when I went home and told my kids the news and I needed surgery, the younger ones, seemed very disappointed vacation would have to be cancelled. I felt so guilty. Its bad enough they have to deal with their Mommy needing surgery and bad enough they may need the same, so I didnt have the heart to take away their Easter vacation. I did decide Kentucky was way to far and cancelled and the jerk has yet to give me my money back even though it was an emergency and I had cancelled in the right amount of time. What an ass! So I decided to go to the Pocono Mountains in Pennsylvania. My kids were sad about Mommy but sill counting down the days to the vacation they were promised. All along I knew it wasnt the right time for ME. Im tired, still in pain, emotionally drained and physically drained. I went from getting a diagnosis to surgery in 3 weeks. I had no time to digest anything. And now there is the 6 week recovery period. Some say “its only 6 weeks of not lifting your arm, otherwise your fine” Thats a load of crap. I read all over the web that for the most part people have some level of pain and exhaustion for the full 6 weeks not to mention the mental aspect of accepting this. So the day of vacation I got scared to death and refused to go…” Its too soon, I dont want to leave my doctor, what if something happens, Im hours away, It’s supposed to snow and we will be stuck!” Yadda, yadda, yadda. I told my family pack up and go and I will stay home and relax and be close to my doctor who is literally 5 minutes from my house. I was crying because I wanted to go, wanted to be with my family, wanted the “old” me back. But then I was crying because I was afraid to leave the house, leave my doctor, “what if I get shocked, what if I fall and the leads move, Ill be in the middle of nowhere” my mind was all over the place. I wanted to go AND stay. I cried for hours, everyone was late leaving, the kids were upset I wasnt going but at the same time were looking forward to vacation. So to make a long story short my husband put his foot down and said “I dont give a shit if we are far away from the doctor. I can take care of you and get you to any hospital in no time ( hes a cop who drives like a rocket) you are safest next to me, not alone and crying at home.Get ready!We are going” I was actually relieved he took the bull by the horns and wouldnt take no for answer. I could stop thinking and deciding. So now Im here and relaxing and enjoying myself. My point is what? Who cares about your vacation lady? Lol! My point is during recovery you are all over the place, your thoughts and emotions will be different than usual. It will take time to get back to the normal “you”. Lean on your family for advice and guidance because during this scary period of pain, confusion , anger, denial, acceptance, everything…..you cant do it alone. Is this a hurdle? Yes. Can I do all the fun stuff I wanted to do ? No. Does it totally suck? Yes. Will it be like this forever? No. Am I alive and with my loving family and will be for a long time ? YES!!!!!! Time to turn my mind off for a little bit and get some relaxtion…

The First Sacrifice, My Father

So here is the crappy part. I just started a blog and I have to get down and dirty right away with the worst part.And whys that? Because you cant talk about a fatal heart condition without a fatality. Its like having a blog about cooking and we talk about taxes (another crappy subject).If Im going to talk about BrS I have to start from the beginning. But before I can discuss me, I have to discuss my father, the VERY beginning. In May he will be dead 4 years .I dont believe Ive ever wrote about that day. God knows Ive played out that day in my head every day but its never made it to paper (or computer screen) I should stop trying to be funny because its only a sad attempt to keep myself in check because I hate this subject. The hardest part for me so far since being diagnosed a month ago is that it FORCES me to think about my fathers death. That is something that my mind has shoved to the very back. When it pops up, I shove it back. It always pops up. Hes my father. I was only 30 when he died. He was only 55.We lost a lifetime together. So it will ALWAYS come up but I shove and shove and shove it back. Thanks to BrS, I cant do that. I think of my heart and I think of his. I think of how lucky I am they found it in time and I think of how unlucky he was. I laid in a hospital with a new guardian angel implanted in my chest and he got shit. Sorry I cursed. I warned you in the “about me” section. Oh well.I dont want to make a novel out of this. I really dont. But it was very traumatic and dramatic. Isnt death always that way? Unless your already forced to face a death such as a relative dying of cancer or something like that. Which I did with my grandparents. There is a stark contrast between KNOWING someone is dying and having time to come to terms with it and finding out, out of the blue with no warning that someone has died. The latter is very traumatic.

It was initially a sunny day in May when I went out shopping with my newborn baby, only 4 weeks old. By time I got home, it was grey and rainy. My kids brought me home flowers for Mothers Day and they were disappointed I couldnt plant them immediately because the rain. So instead I made dinner and we sat down to eat. A couple bites into our meal, the phone rings. I told my husband to ignore it because its a pet peeve of mine when people call at dinner time. He answered anyway and brought the cordless phone to the table with him. He answered, we ate. I heard yelling coming from the phone. My husband jumped up from the table and yelled “WHAT?!” into the phone. He stood up so quickly he knocked his chair over and dashed from the table into another room. I just continued eating. I wonder why I didnt react to his behavior but I think I was so sleep deprived from having a newborn and 3 other children, I was on another planet. My oldest daughter looked at me and said “whoever is yelling, I think they said someone died” Now I was back to earth and at full attention. I left the kids to eat to find my husband with the phone. He was standing in the foyer by the front door , not talking, just listening, and the person (who turns out to be my sister) kept yelling in the phone.He just stared at me while listening to her. I said to him, “Did someone die?” He looked at me with a look Ill never forget. It was sad, pitiful, shocked, empathetic. He just stood there with the phone to his ear while my sister ranted on staring at me while I waited for an answer.He finally nodded confirming there has been a death.”Who?” I can tell he really didnt want to say the next sentence and it would hurt him terribly to say it but at this point he had to tell me. Louder this time… “WHO!!!!????” He quietly said in barely a whisper…. “Your father”. “What?!!! What?!!! What?!!!” Thats all I could say as the tears flew out and it felt like someone punched me in the stomach and chest.I almost fell in shock.He hugged me and I pushed him away and snatched the phone out of my husbands hand. I got on the phone demanding details. My sister was hysterical. I could barely understand her. I caught bits and pieces…”Dads dead” “found in the back yard” “he was all alone” “what are we going to do?!”…Like a deer in headlights I just froze and listened, I said nothing. I was rendered speechless. I couldnt process what she was saying, I couldnt answer. My voice wouldnt work. She kept crying and asking me questions and I said nothing. I was disconnected. I hung up and called my mother (they are divorced so she didnt know) and screamed in the phone “Dads dead!” My sister called her at the same time so she had one phone up to each ear, with each daughter screaming in her ear. She barely understood either one of us. Luckily, my mother lives a few blocks away and came over right away.From here its a blur. A lot of crying, hysteria, shock, disbelief, nausea, headache. I just sat on the couch and cried and cried.I havent seen my father in years and we were fighting and JUST started finally talking again long distance. Now he was gone. No making up, no goodbyes, no “Im sorry”. It was over.I didnt believe it.Guilt and regret crashed down on me to the point of suffocating in it. My mother made a few phone calls and found out the details and relayed them to me. He was mowing the lawn after he already worked a full day. My step mother was inside watching TV. She looked outside and saw him sitting in a patio chair under a big beautiful tree “sleeping” She thought he looked so cute “napping” under the tree in the lovely back yard after a hard days work.She yelled his name out the window to wake him up and come inside but there was no answer. She tried and tried but figured he was exhausted and she better go outside and shake him awake. She said as she got closer she had a feeling of dread because his color wasnt right. He looked peaceful like he was sleeping but his color was off. She shook him and realized he was dead and barely warm. 911 was called. They flipped him out of the chair and onto the ground and tried to resuscitate him although we dont know how long he was dead. Its protocol I guess.His little chair flew across the yard and stayed upside down, untouched by anyone for days. They rushed him to the hospital and pronounced him dead at 5:21 PM. The doctor said it was cardiac arrest, his exact words “sudden death”. An autopsy was never performed so we arent positive how he died. If he was in pain or aware of impending death I dont think he would have sat in a chair. I think he would have attempted to get inside or call out for help to his wife.The doctor thought the same.He would have been found on the ground or near the house, not what looked like a peaceful rest on a May day in his new favorite spot, his back yard…..

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….