Guilty as charged (Part 1)

A lot of people want to know my story. How was I diagnosed, how did I find out, what happened, was it scary, surreal, no surprise? Id figure Id share this. First, I am considered asymptomatic which means I havent had syncope (fainted), I never had cardiac arrest and was resuscitated, I never went into ventricular fibrillation (V Fib) or extreme tachycardia. I have palpitations, pre-ventricular contractions called PVCs for short (essentially its an extra heart beat here and there) and I get alot of fluttering and breathlessness at night. Night is when all my symptoms come out and cause insomnia. I think these are symptoms and many with BrS have them, but for some reason most doctors dont use these symptoms as criteria for diagnosing. Only the first couple I listed…arrest, v Fib, syncope are taken into consideration.

Once I hit 20 I started with palpitations and fluttering and sometimes it was bad, very bad. Ive seen one cardiologist after the other over the last 14 years that ran than gammet of tests. “You look good! Your healthy! Echocardiogram is good, stress test is good, holter or ECAT monitor shows harmless PVCs” I knew I had symptoms but hey, they didnt seem to care or be concerned so I ignored it. A few years later Id see a new cardiologist and was told the same thing. This cycle of ‘accept’ your symptoms and move on then find a new doc went on and on. I knew I was feeling something but being no one was alarmed, I wasnt. Doc after doc, no concern, so Id ignore it.

I did have one interesting occasion though that was alarming but I thought it was a single incident. A few months after 9/11/2001 (my husbands police department lost many officers and he dug at ground zero) I was under a lot of stress. One night I had a heart rate of 120 just laying down. It wouldnt stop, it was uncomfortable and I had pain and burning in my chest. I did something I never ever would do because I HATE hospitals, I called an ambulance. The moron EMT told me it was probably indigestion but if I insist on going he will take me to te hospital. They didnt even lay me down on a gurney in the damn ambulance. I sat in a corner and listened to this uneducated jerk who shouldnt even be in the medical field talk about what food he was craving. Hello!! Chest pain! Tachycardia! Can you lay me the hell down and stop worrying about your freaking cheese doodles!!!!Oops! Went off on a tangent a bit there. Just so disgusted with some ‘medical’ personnel. Anyhow, I went to the ER with my ‘indigestion’. They came in and ran an EKG. All that is , is when they stick electrodes all over you to see a visual pic of the electric activity of your heart. The nurse ran the first one, looked, ripped up the paper and ran it again. The second one she ripped out. She left the room and brought in another nurse. She checked the electrodes were in the right place and ran another one, stared and commented the machine wasnt working. I just stared thinking I was still in the presence of pure incompetence. I believe a 3rd nurse came in and ran it. What the hell?! 3 nurses cant read this!? Im not sure but they might of got a new EKG machine or brought a doctor in. I cant remember. All I know is a doctor had to come in and run what I think was my 4th or 5th EKG. the doctor walked out and the nurse said ” Id sure like to know what your family history is!” And walked out. I looked at my husband who left work and met up with me while he was still in uniform.Maybe there IS something wrong! I knew fat cheese doodle boy didnt know what he was talking about. I think I now what agita is!(indigestion in Italian) The doctor comes in and said ” your EKG shows frontal damage to your heart!” English please!? “It looks like you had a heart attack tonight” I wont bore you with the rest and details about running blood and all that. That was the beginning.The beginning that still gave me no accurate diagnosis because Brugada was only about 9 years old.I was taking Stacker. Remember those dumb diet pills that leave you full of energy and promise to shed the pounds? Well thats what they thought, the herbs in the diet pill gave me a heart attack. That was my diagnosis and I accpeted it. I saw a few more doctors after that but it was the usual ” I see nothing wrong!”

Fast forward to 2009, read my article “The First Sacrifice” about my fathers death so I dont have to re-write it. Once my father died, I was REALLY concerned about all these heart symptoms I was feeling that no dodctor was concerned about. What if I end up like my Dad? What if something is REALLY wrong? Maybe all my doctors are unqualified? Back to the cardiologist I went but a new group. This was probably my 5th or 6th cardiologist. I felt they would be a little more concerned now that have an early cardiac death in my family.More tests…monitors, EKGs, stress tests, bloodwork, etc. “Nothing is wrong! Your EKG is a little abnormal. Just some PVCs. Increase your potassium by eating bananas and leafy greens, stay hydrated, avoid stress and get good sleep” I left defeated and scared. He said my EKG was abnormal! Abnormal how? It doesnt matter I guess because he said nothing else. A few months, I decided to go back and see ANOTHER cardiologist. This time the nurse mentioned my abnormal EKG AGAIN but the doctor said nothing about it and told me to follow the same bullshit “potassium, hydrated, good sleep” rant. I left disgusted. 10 years of this crap and no one is concerned , all tests are fine, I guess Im fine. Im not going back. Ill just deal with it. 6 or 7 doctors cant be wrong. But deep inside my intuition said ” No damn it! I know my body!”

Fast forward again to now 2012, 3 DAMN years later!! The symptoms are still here but worse.Horribly worse and very scary. Im haunted with the thought I will just drop dead like my Dad. Im afarid to be active, afraid to do too much. I dont want to die in front of my kids. Thank God my husband is a first responder and knows CPR and all that. I KNOW SOMETHING IS WRONG!!! Why wont they believe me? Why wont it show up??? I called the doctors group that I saw in 2009 thinking maybe there has been a change in 3 years. Ill go in. What the hell I have good insurance. The receptionist tells me my usual doctor is booked “would you like to see a different doctor that is closer to your house? We have another office” I said it was fine and happy I didnt have to travel.Lets do the run around again. Cant wait!

I went to my appointment, the nurse ran the EKG , stared at it and walked out. Here we go again. WHAT ARE THEY SEEING ON MY EKG THAT IS SO FASCINATING ALL THESE YEARS? The new doctor walks in. A young female fresh out of med school. That annoyed me. I wanted a ‘big wig’ someone who knew everything. She looked at my EKG, looked back at the ones at 2009 and asked me “how do you feel right now?” I said I felt fine at the moment but have had palps/fluttering/breathlessness for years but am fine. She said in a serious tone “your EKG looks like your having a heart attack right here, right now, right before my eyes!” Shocked a minute but then I laughed and said “Im fine, no heart attack at the moment” My mind zoomed back to 2002 in the ER. I jumped up! “Wait!”…I was told years ago I had a heart attack from diet pills! Could that cause a bad EKG always?” She looked back at 2009 files again and said “whats alarming is your EKGs from 2009 and after, say the same thing, it always looks like your having a heart attack. They havent changed at all” Now Im annoyed because the other 2 cardiologists told me it was “abnormal” but not in what way. Why didnt they seem concerned? This new doctor looked VERY concerned. She said” In light of these unchanging EKGS and abnormalities and your fathers death, we need to investigate. I want you to see my colleague, an electrophysiologist. He studies rhythm and electric in your heart.” Now Im confused but happy. Somebody FINALLY believes me but wait…”Whats wrong?” “You might have a congenital heart defect and need a procedure done” I looked on with total confusion yet relief. She left the room and told me to see the EP. This women was a part of saving my life….

It was a 2 month wait to see the EP (electrophysiologist) and a stressful wait as well. Finally the day had come to see him. December 7th. Again we did the “stare at the EKG, stare at the patient” dance. He asked me a million questions about my family history, looked at my old charts, he spent an hour with me. He said “It looks like you have Brugada” Like the rest of the world I didnt know what he was talking about. He explained it was a heart defect in the sodium channels. Okey dokey. No biggie. What pill are you giving me? He explained it causes cardiac arrest or sudden death in many patients and its rare but fatal.Now, Im ready to freak. I dont like what Im hearing. My father! Oh my God! I AM going to die like my father! I knew it all along!! Now what???? He stood close to me and put his hand on my shoulder. Hes a very compassionate, nice doctor who seemed sad about this new especially because Im a young mother. “If you have this I have to put a defibrillator in you to save your life” I looked at him and the nurse and cried like a baby as he explained this and that its HIGHLY hereditary.I turned into a blubbering, crying, inconsolable mess. He felt very, very bad. He seemed positive before this it is what I have but once I started crying he said ” Its very rare. I dont think this is what you have. But being you have some signs, I have to check. Calm down. Its OK. Lets just check first and run several tests including genetic testing” My crying calmed down because I didnt have fact yet but I WASNT expecting after 14 years of nothing to hear the words ” I might need to save your life” Talk about a whirl wind of emotions…sad, scared, relieved, happy, fearful, angry it wasnt noticed before, thankful I found 2 amazing doctors. Off I went to get all tests done and wait until February 15th. Another 2 months of waiting for my fate.In the mean time I went home and googled all about BrS and made myself a pro and scared the shit out of myself for 2 months and spent a good portion of it crying. I was terrified now. But maybe, Im fine, like the rest said….

The whole month of January, I had tests done and they said they would call if there was anything wrong. No calls. All my tests must be fine and Im feeling VERY good about that. My genetic test was done and would be ready by beginning of February. Everything is hanging on that test( which I know now isnt totally true as only 30% of BrS patients come up positive, you can have BrS but still be negative) Its a week before my appointment and I called the lab to see if my results are in and on the way to my doctor. “No. Unfortunately, they wont be ready in time for Februray 15th. Sorry”

Today is the day. I will sit down with my EP to go over all tests EXCEPT the genetic test. Im scared to death. Why? They never called to tell me if the other tests were abnormal and the blood test isnt in so why should I be scared. It almost seems like a pointless appointment at this point and I was tempted to cancel. I might as well just go and see what he has to say..

“Well, your ECAT is normal, your stress test is normal, your echocardiogram is normal, EKG is abnormal but otherwise your heart is very healthy” AH! things were looking up, he seems positive, I was feeling positive.”Did you get the genetic test?” “Yes, and sadly we have to wait another week or 2” “Okay, thats fine” He fumbled through my chart and grabbed a paper out and was reading while leaning against the wall. It was dead quiet in the room. I took a peek and saw the heading of the paper was the name of the genetic lab. I was still calm but curious. Hmmm…whats he reading? It cant be the results. I just talked to them and they said they arent ready. Maybe hes reading to see what the tests will show and its accuracy when he DOES get it? He stopped and looked at me, a sad look. Went back to reading. Another quick sad look and back to reading. What?! What? What are you reading? “Okay, I have your blood work here, the results are in” I almost knew he was going to say I have Brugada because why else did he look so sad and keep looking at me while reading. He knew what he had to tell me, he knew I was sensitive and a very anxious person. He was buying time when reading trying to figure out how to tell me what ever that crap piece of paper said. I didnt want to hear it. I cut him off an said “Thats impossible to have the results. I just spoke to them Tuesday and they said they need another week” Kind of like, “Ha! Your wrong, thats not my bloodowrk!” He said “well this report came in Wednesday, the day AFTER you talked to them” I stood my ground and said its impossible. He stated my name and date of birth to confirm the results were mine and I confirmed it. “Then these are your results” Fine, I figured, just tell me already although I was the one obviously stalling. “It says a mutation has been detected” “Okay, well what does THAT mean?” “It means you are positive for Brugada”

My breathe left my body, my heart raced, the tears came gushing down and my body started shaking (I told you i am VERY anxious)Almost incoherrent, I said “I HAVE IT??!!” He just nodded, him and nurse looking particularly sad. The nurse jumped up and ran out claiming I needed tissues but I can see she felt very bad for me because she is my age and has 4 kids and it could easily be her getting the news. “Your kids need testing, they may have it” The sky crashed in on me, the room got small, I just sat there crying like I was in a dream. That must be it! Its a dream! I played this out in my head for months…,the scene of when Im told I have it. Thats all this was, a nightmare. It will go away. Someone please wake me up. Jesus! Wake me up. Jesus…why????? My EP started talking, throwing facts at me, asking questions, having the typist right down everything proving once and for all with 100% certainity I have Brugada. I sat and cried and stared at the doctor. I couldnt take my eyes off of him. He will save me. He has a solution. Hes brilliant. He found the diagnosis after 6 or 7 doctors failed over 14 years. He will make it better and all go away.He stayed close to me feeling awful. “There is no cure. I need to put an ICD in you to keep you alive. You can live very long with Brugada and NEVER have cardiac arrest BUT you can have it too. Its a risky, fatal defect with no rhyme or reason. What do you want to do? I cant force you to have surgery” I opened my mouth and started crying about how I dont want this, I had plans, why the death sentence, what If I wanted another baby, will I have a normal life, my kids, my God, what about my kids? I rambled and cried and on and on. He listened and assured me life would be normal with no limitations. It is not a death sentence because I cant die!I will out live him! Its a preventative like an airbag in a car ” You may never need to deploy an airbag in your whole life, but if you do crash, you will live.Same with the ICD. If and when you go into arrest, you will LIVE! Please understand how dangerous this is and although we are not certain you will arrest we want it in place for you. You have a whole family to take care of” “What if i dont want it? What if I dont want this thing, this machine, this man made garbage in my body?” Now he looked concerned…”well that is your choice but I do caution you that this is a fatal defect and I cant guarantee anything. You have children to care for” We just stared and the nurse stared.He rattled off the complications of the surgery but told me they are slim and its much more beneficial to have the ICD.”Do you elect to have this done? Do I have your consent and you have full understanding of all complications?” I snapped “Do you give me a choice? Like I could say no!” I felt bad. Its not his fault. Afterall, he has saved my life. I finally gave in “Yes, I will have an ICD implanted” He told the nurse what to type, I sat there in dismay and shock, angry and sad. He walked me to the front desk and said to the receptionist “Set her up for surgery” The tears flowed again after hearing those words. The cold secretary just looked at me. He patted me on the back and asked me if I would like to see him and sit and talk one more time before its done to calm my nerves and be certain. “Yes! Please doctor!!!” He smiled and said fine and walked away.He said I need to be squeezed in to talk to him again and the receptionist said its not usually done that way and rolled her eyes at me. The secretary just ran her mouth to the secretary next to her as I cried and wiped my tears and mascara. I wanted to grab her by the throat and say “stop lauging and talking and enjoying yourself in front of me! Im 34 and need a defibrillator you heartless bitch!Roll your eyes one more time. I dont care if he doesnt USUALLY see patients before surgery but Im special. Im probably the only damn Brugada patient in this whole freaking practice!!” I just wanted to slap her. a persons life has been ruined and she went on talking to someone else about her lame life, wheres the compassion??? She told me the surgical departmet to one of the best teaching hospitals in my state would be calling to tell me when I will have surgery . It will be within a month and it will all be over…

I walked outside to my car…defeated, old, broken,defective. Life will never be the same. There was yesterday, and now there is today. Death has been stalking me and by the grace of God, death has held out and only by chance did i see the new cardiologist who recommended me to the EP, these 2 together saved my life. The defib wont cure me, just protect me. I will end up like my dad as always forecasted. My heart will stop someday, but this computer will save me. Only because i saw a new doc. God led me to them.Time to tell the family. I sat in the car and sobbed and looked at the world with hate and anger.I watched others drive by and felt envious that they might be having a better day than I was. I want yesterday back….

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3 Comments (+add yours?)

  1. Trackback: If I Was Younger I Would Become a Neurologist | terry1954
  2. Mikie
    Apr 07, 2013 @ 08:14:08

    I beleive this was the point where you found the “Support Group” on Facebook.

    Reply

    • aliciatburns
      Apr 07, 2013 @ 10:47:11

      Your right Mikie! I came to you guys in a total melt down. You are the best group ever! You gave me such strength and knowledge. Everyone is so nice and positive. Its a great group. No debbie downers lol!

      Reply

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