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…

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17 Comments (+add yours?)

  1. Anna
    Apr 03, 2016 @ 01:43:07

    I was in my 2nd trimester with my third child when I was diagnosed with Brugada through and EKG. (Confirmed later with genetic testing) I had previously been told two years prior to this that what I’d been feeling was nothing just harmless PVCs and I would be fine. “Exercise would make them better” the cardiologist had told me. However, my palpitations only got worse with exercise and I had a strong doubt of my diagnosis but I just kept ignoring my gut. So when I was told I had Brugada, I was terrified. For the rest of my pregnancy I had to wear a life vest, since getting an ICD was not an option until after my baby was born. Now that I have an ICD I feel exactly like this article states. Fear. Fear of having the ICD,fear of Infection, fear of getting shocked anytime my heart skips a beat. I try not to think about it and succeed most days. However, it’s always in the back of mind. Thank you for your brutal honesty. You have written what I have been feeling. I write this in the middle of the night because I had an episode and do not want to go back to sleep. My heart just fluttered a little but every time it does this I wonder if it will get worse and if I may pass out and get a shock. I’m only 35 and I’m wondering how I will cope with this fear the rest of my life.

    Reply

    • AliciaB
      Apr 03, 2016 @ 08:20:21

      Take one day at a time Anna. That is all you can do. And if need be, ask your doctor for some medication for anxiety. Sometimes we need it!! I do!! I hope you are sleeping now and getting some rest. I read once to enjoy the beating of your own heart because it means you are ALIVE! Think of it that way 🙂

      Reply

  2. Trackback: Brugada Makes You Mental | Brugada Girl
  3. Aron S.
    Mar 20, 2015 @ 07:55:42

    Hello,

    i am 20 and have been diagnosed with polymorphic Ventr. Tachy. of origin yet to be determined. At age 18, I was recommended an ICD after an aborted SCD. Since I have been symptomatic quite early, doctors told me, an ICD would be inevitable, as my risk of SCD is extremely high.
    Unfortunately, I have a high incidence of shocks and had to have my entire ICD system be replaced due to lead fracture after only one year and nine months.
    As it became clear, I would have to have my ICD replaced, I actively searched for alternative therapies of whom there are none, however upon request, doctors implanted an S-ICD which has a rather big advantage over transvenous systems: no lead inside the heart.
    If you have not yet decided to have an ICD, maybe this is the way you would like to go. There is a video on youtube showing the implantation of such devices (viewer discretion adviced ;)).

    Yes, this is not going to prevent inappropriate shocks, I can tell from experience, yet the overall complication rate is significantly reduced dhe to the less invasive procedure.

    Here are some pros and cons I have written down for myself as my decision arose:
    Pro:
    – Minimally invasive
    – Lower complication rate:
    – No leads inside the heart
    – Very low chance of lead fracture
    – Therapy effectiveness equal to transvenous devices
    – distinguishes the rhythm, not the beat (theoretically lower chance of inappropriate schocks with sinus tachycardia)

    Cons:
    (- no significant advantage in terms of inappropriate shocks)
    – Noticeably larger, than transvenous devices
    – More expensive
    – three/two incisions rather than one
    – ICD implanted in the left anterior axillary line, thus possibly less asthetic

    Hopefully, this may help you and/or other people deciding for or against an ICD.

    All the best!

    Reply

    • aliciatburns
      Mar 20, 2015 @ 17:05:43

      Aron, thanks for contributing that information! I have an ICD already but in the future when its time to replace this one I may consider an S-ICD. Its nice to get someone’s opinion on it who actually has it 🙂

      Reply

      • Aron S.
        Mar 20, 2015 @ 18:02:08

        Hello Alicia,

        I would definitely get an S-ICD, considering when you need a new one, these will probably be a lot smaller. The current ones really are huge in comparison 😉

      • aliciatburns
        Mar 21, 2015 @ 08:37:41

        I have to admit I’m vain and I wouldn’t be happy about a huge block sticking out of my side lol! The ICD I have now is so small you can’t see it

    • Jo Arbeiter
      Jun 03, 2015 @ 14:16:34

      I apologize for just now reading this post even though it is months old. I loved this post. It’s so true and gets right to the point. I am going to be getting my defibrillator (subq) removed after only 3 months of having it for reasons I am too angry to discuss. The word anger just doesn’t sum it up. I feel your pain.

      Reply

      • AliciaB
        Jun 04, 2015 @ 07:25:22

        It’s funny, I wrote this post around the same time you got your ICD. Here I am afraid of it misfiring and you actually brought my fear to life

  4. yemayajames
    Feb 18, 2015 @ 23:59:56

    Thank you for this article. Its better to know facts than be in a mindframe that everythings going to be ok then to find out its not. My 20year old fit and healthy cousin died from Brugada Syndrome and im going for my blood test in about 3 weeks. Its scarey.

    Reply

    • Jo
      Jun 04, 2015 @ 11:12:00

      I am terribly sorry if I have instilled more fear into you, but I’ve never been the type to sugar coat anything…I wish more doctors were like that. Your fear is normal and very real, and with good cause. Mine has misfired various times in a 10 day span, sometimes shocking me multiple times in a matter of seconds. Luckily, I was never alone. Unfortunately, I was never alone. I say that because during one of the “therapeutic shocks” my children were present. To be completely honest with you, upon implantation of my defibrillator, I guess I never really actually thought it would go off. Call me ignorant. I definitely wasn’t ready for it to misfire just 3 months after getting it. After I went to the doctor and they ran the diagnostics, they turned down the sensitivity and sent me on my way with the assurance that it should never happen again. So, just imagine my shock (no pun intended) when just a few days later, the same thing happened. I am not trying to put fear into anyone. I am just being brutally honest. Risk vs reward, I repeat, RISK vs REWARD. My advice? Become an EXPERT about your condition, whether it’s Brugada or any of the other numerous heart conditions. Doctors are only doctors and, let’s face it, they don’t care about your life as much as you do….as much as your spouse does…or your children….Nobody cares about YOU more than YOU. Learn everything you can. YOU may just have to save YOUR life one day, Make sure your family and friends know CPR. A 911 operator can walk them through it but that takes time. In a cardiac emergency, that’s the one thing you do NOT have. I’ve entered into a whole new level of fear I’ve never experienced before. It’s extremely personal, as it should be, This is my life. This is your life. It’s no joke. Take care of yourself. God Bless.

      Reply

  5. Ryan Deckert
    Feb 15, 2015 @ 15:26:54

    Alicia,
    First off, like you I am a very private person and, although I am new to this way of life, you seem to put into words much of what goes through my mind on most days. There is no ebb and flow to life really; it’s chaotic and messy more often than not. I thought I would feel so much better after the ICD but have not
    Physically or mentally recovered the way I assumed I would. I try to take it a day at a time, despite sounding so cliche. My imagination and thoughts usually get the best of me though. I remain the quiet and reserved person to all I interact with; on the inside I am a complete and utter mess.
    You have nothing to apologize for. Sure, some of your feelings and emotions may be scary to some, but we should be there for you as much as you are for others. You bring up the word fear and I think that is the nucleus of what everything centers on. I know it’s psychological to a degree, but ever since my diagnosis and surgery,
    I have felt more out of sync and defective than ever. The night after my surgery I had an episode which almost made me pass out. My heart rate dropped ridiculously low which instilled me with little confidence. My family has some closure over this Syndrome because of my surgery and I guess, I keep quiet about my fears because I dont want to rock their boast, so to speak. My point is, your feelings and fears are completely justified here. I wish I had more words to comfort you. I find more comfort in a post like yours than speaking to friends and family who ofer their well wishes when they have no idea what something like this does to a person, physically and mentally. I hate to end this with a take care, regardless of how heartfelt it is. Just know you can reach out to others,
    Like me, if you ever want to vent or discuss further

    Reply

    • aliciatburns
      Feb 15, 2015 @ 15:30:09

      Ryan, we are all in this together because no matter how many people say “I understand” they just don’t. The mental chaos is always the worst for me. Rest assured you will have good days though. You will. I promise. With this, patience and fortitude is a virtue. It will eat you alive if you let it so just keep pushing forward okay? Im always here for you all

      Reply

      • Ryan Deckert
        Feb 15, 2015 @ 15:42:14

        I do have my good days, just not as many as id like at this point. As you said, we are all in this together…that means we are here for you too! Take care of you. 🙂

      • aliciatburns
        Feb 15, 2015 @ 15:48:51

        Thats means so much to me Ryan. It really does. In my attempt to help others, I never ask for help for me anymore. I feel selfish asking. But sometimes it just sinks its teeth into me, like this week. Ive had 2 years to digest this syndrome so I can say I have more good days than bad. Hold on to that. In the earliest post op months, its the hardest. It gets better. Its just that it never seems to stay consistent and stable. But overall, its does get easier. Don’t forget I have a Facebook page with all Brugada patients. Its a good place to talk with others 🙂

      • Ryan Deckert
        Feb 15, 2015 @ 16:13:02

        Thanks Alicia! I have a Facebook page which I deactivated due to all the silliness on there. Your page seems like a good outlet for discussions and interactions with others regarding Brugada. I feel very isolated right now, despite being surrounded by family. Like you, I don’t have a lot of friends: I am very private. I will check your FB page out for sure.

      • aliciatburns
        Feb 15, 2015 @ 16:21:55

        Yes, please make a FB account even if its just to talk with others. There are a few Brugada support groups on there as well as ICD support groups for all sorts of heart problems. They are private, closed groups so the only people who will see what you say are in those groups. It helps a lot

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