The Way of the Cross (Part 2)

I wrote the story of my diagnosis already but not what happened afterwards. To read the story of my diagnosis please see “My Story” at the top of the page.I was diagnosed on February 15th and surgery was March 6th. I had 19 days of mental torment, torture, disbelief, crying, denial, anger. I froze.My life froze. I didnt want to eat, cook, clean, go out, go to the gym, do the things I usually do. I suffered and read and cried and googled all day and night. I woke up scared to death and went to bed even more afraid wondering if I would wake up. Like Jesus, I had a heavy cross on my back and carried it day in and day out, getting heavier, wearing me down, breaking my stride, leaving me face down in tears. I couldnt throw my cross down and walk away. I couldnt change it. Fact is fact.I have Brugada and need an ICD. So I picked up one of the heaviest crosses I ever carried and went on to my own personal Calvary of staring at the ceiling in a hospital waiting for sleep to overcome me and them cut me open and place a machine in me like a robot or a car to sustain my life

Most of us here were diagnosed with something we never heard of right? How many here can say when they were told they had Brugada they said “Oh, I know all about it!” Having a relative have it and then finding out doesnt count. I mean the people who never, ever heard of it. What did we do!? Come home and run to the internet to find out all we can. We became little books filled with facts about Brugada. We overflowed our brains with fact and death and scary shit. Does anyone deny it? I did it! All I found was statistics, and death….sudden death, cardiac arrest, dead in your sleep, dead anywhere, is dead, was dead, death, die, will die, might die…Everywhere. Depressing is putting it lightly.The phrases that suck hope out continue…no cure, no prescription, ICD is the only way, hereditary, check your kids, spreads like wildfire in the genes, fatal, rare, unknown, no treatment, lack of experts, shocks, painful, inappropriate shocks, etc.Let me tell you something, you read that stuff day in and day out and you become a mental case, the crying, the depression, the sadness and fear grip you and squeeze the life out of you like a boa constrictor. Your barely breathing your so scared and so smothered in fear. Then I hit the point of “I cant wait to get this thing in my chest!”

Although I lived for 34 years like this Im now suddenly all to aware that when I close my eyes at night it can be the last time I see my surroundings. I laid in bed each night, stared at my room, stared at the baby sleeping next to me, stared at my husband….what if I dont wake up? What if this is it? Needless to say I was only going to sleep with the help of prescriptions but at the same time DIDNT want to sleep. It was a tug of war in both directions…close my eyes and maybe death comes so I should stay awake! Or go to sleep and risk it but I will be one day closer to a remedy. This happened every night. I generally woke up and kept busy and had a brighter outlook….Im lucky they found it. What a damn shame my Dad wasnt so lucky. I tried to keep busy but my mind kept thinking and running like a hamster in a wheel in my head….What if I die here right now? What if the kids see me? What if Im in the shower? What if Im driving? I got to get this surgery done as soon as possible!!!! Then my alter ego would come out and say “You dont have this! Its a load of shit! They dont know what they are talking about! I dont have symptoms! Maybe they are wrong. Thats it! Im not getting it! No one is slicing open my arteries, threading a wire into my heart and sewing some electric box up in my skin! IM NOT GOING!” This was my days, back and forth… “I want it! I dont want it!” I drove my family nuts. I am VERY strong-willed and stubborn. Nobody can make me do something I dont want to do. So when I said Im not going, they knew I meant it. It was turning into a love hate relationship…I love that Im getting an ICD, Im lucky, I will live, I dont have to die like my Dad. I cant wait until its over! But then it switched back to… I dont need or want it!I lived this long!Screw it! Im ignoring it! I need a second opinion (which by the way was THEE Dr Brugada who looked at my EKGs and told me “Im sorry but you are positive, a Type 1”)

So this is how 19 days went. It was an emotional roller coaster.I touched on every emotion God made. The hardest part is they were never consistent. I wasnt sad the whole time or happy the whole time.I was all over.Crying was a daily occurrence, arguing with my family on should or shouldnt I was a daily occurrence, praying my heart out for my children was a daily occurrence. I lost 19 days of my life not wanting to face the truth when I should have just held my chin up and do what I needed to do. I dont have that type of personality that remains calm and unwavering like my husband. Hes amazing like that.I have to be a ball of nerves and emotion and drama. Oh well!I am who I am and when someone tells you while looking you in the eyes “I need to save your life”, how is someone REALLY going to react? In hind sight my reaction was normal. Totally normal. You cant go from healthy to staring down the barrel of a gun and NOT feel something. My best advice is let your emotions run a muck, let them out, feel every emotion you need to feel, purge it all out and eventually you get to a point of peace and determination. Im well on my way…

6 Comments (+add yours?)

  1. Dee
    Jul 06, 2017 @ 14:31:20

    My brother has it, and my base EKGs and stress EKG at the Cardiologist have been fine, but after some palps w/dizziness I’m going to see an EP to do some real testing. I finally did my research and am scared every day. It’s really affecting the quality of my life. I hope I get answers soon, but I don’t even know if those will ease my mind 😦 How do you cope?


    • AliciaB
      Jul 06, 2017 @ 16:20:00

      Yes, see an EP. Ive had many cardiologists look over my diagnosis. They didn’t even know what they were looking at. It was an EP who diagnosed me. Don’t let it effect you until you know for sure or all your worry will be for nothing. Hang in there!


  2. Larry Dismas
    Apr 04, 2013 @ 04:00:36

    This pretty sums up what ive’d been through for the last 3 weeks or so. It is like a roller coaster of emotions, except that after i ve’d been diagnosed, i was never let out of the hospital and stayed there until i had my ICD done. Stayed in the hoital through out my admission to have all the test you can imagine, from daily blood test, exercise tolerance test (ETT), Cardiac MRI (CMR), Ajmaline Challenge test, different type of ECGs, from a daily normal 12 lead to a more complex Signal-Average ECG and i even had a Digital ECG done so they can store it in their digital file, 3 Lead Holter, 12 Lead 24 Hr. Holter monitor and Electrophysiological Study (EPS),and all through out i was hooked up on a heart monitor either be a portable heart monitor at bedside or a mobile telemetry so i can go out and about but never let out of the ward, not a single one during my admission.I felt like i was a prisoner. A lot of things went through my mind, things i didn’t imagine i would worry in my life, the only things that kept me sane all through out is my faith in the LORD and my love for my FAMILY and FRIENDS! I have always been a religous person , i was brought up that way, i always strive to be a good Catholic. Being brought up in the Philippines ( which is predominantly a Catholic counrty,where i am originally from, hence the name “Pinoy” short for Filipino) i have learned to always hold on to my religious beliefs that nothing is impossible to God, and should always trust in him and he will always guide, protect and keep you from harm and in that faith, i know i am in good hands!
    I Don’t know if you believe in superstition, but always believed that deceased relatives or loved ones always watch over us what ever we do, and i always believed that with my Dad. On the night before i complained of chest pain, i had a dream and saw my Dad talking to me as if he was trying to say something but i could not figure it out, but i do believe now that he was trying to tell me that he does’t want me to end up dead like him so i need to be cheked out for my heart condition, and that is why i am very greatful to him. I celebrated my Dad’s 70th birthday in the hospital on march 15, and asked the nurses if i can go to the hospital chapel so i can pray, which is literally just opposite the ward. I prayed for my Dad and asked the Lord for a sign that if it is his will, i will not question him but just lead me the way, law and behold, as soon as i went back to the ward my electrophysilogy consultant saw and told me about his plans. He want’s me to go to a specialised hospital in St. George’s Hospital in London under a specialist Electrophysiologist who is considered as an expert on BrS. And his name is Dr. Elijah Behr. ” ELIJAH” meaning “MY GOD IS THE LORD” that was the sign i have been waiting for, i knew then , that everything will be fine. He is the most genuine and down to earth person i have ever met, he explained to me everything and gave me choices and he let me know every step of the way and he even personally visited me on his own before i left the hospital. I think he is heaven sent and the rest you might say is history . I have learned a lot from this experience and hopefully will help me to go on with my life with the help of my loving Family and ever supportive Freinds! Praise the Lord! Amen!


    • aliciatburns
      Apr 04, 2013 @ 19:41:52

      Larry, thank you so much for sharing your story here for others to read! I cant believe you lived in the hospital for so long! They sure were thorough! Im sure it helped you mentally to be in a hospital until you had an ICD. Heaven forbid something went wrong at least you were in a hospital. I had 3 weeks of KNOWING but being at home every night, I thought I would die. Im very familiar with the Filipino nationality and faith. My church has an ENORMOUS Filipino population and one of our priests and deacons are Filipino. You are a very devout, religious nationality. I admire that so much. Your Dad died in his 50s like mine. And like you, I think he led me. If you go back to “my story” at the top you will see that I only got a proper diagnosis because I switched doctors and was determined to find out something was wrong. I think my Dad was leading me the whole time and kept whispering to me to keep going, keep trying to find whats wrong. They died so we could live…


  3. aliciatburns
    Apr 03, 2013 @ 16:44:17

    Maybe God IS telling you what to do and thats why you have a gut feeling! I personally would take Dr Brugadas word first.He has taught the world about BrS I fore warn you though, he never advises against a doctor because the liability. I already tried that route. I was in total denial and asked him if he thinks I need an ICD and he said I have to do what my doctor feels is best and express my concerns to him. Dr Brugada is a gentleman, he will state fact but he wont stand against your doctor. He did say that family history, EKG and genetics need to ALL be taken into consideration when deliberating an ICD. Dont you meet all this criteria?


  4. Erica Haak
    Apr 03, 2013 @ 16:04:24

    Oh gosh, you just perfectly described my days. This Brugada thing is tormenting me! I have made contact with dr. Brugada and am in the process if getting copies of our family’s ECG’s to send to him. I spoke with my aon’s cardiologist to do so and explained that I am so anxious about my personal case (so far my other children are in the clear) and that I was just trying to get to the bottom of it. He is extremely helpful, and went on to honestly advise me that there is still so much unknown about BrS and that there are many differing opinions in the cardiac world of doctors. He told me that, as fantastic as the Brugada brothers are, there are still many experts in te world looking into all this, and that his advice still MAY not be right. (He wasn’t being disrespectful, just stressing that tere still too much unknown). But f course now I start to think “WELL WHAT MAKES MY DOCTOR RIGHT THEN?!!!”. I am honesty starting to think that this thing is too unpredictable to NOT have an ICD! Doctors advice or not, maybe I need to go with my gut feeling.

    My husband knows that I need to find out as much as I can about this all, but as it is affecting my sleep, my days, my attention to my children (I tend to just daysream about what could happen and switch off), he has asked me to try not read too much… To try to just trust in God. I know what he is saying, but I just can’t leave it!!!!


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