Dead Man Walking

Does everyone know what dead man walking means? Its a saying referring to a person who is alive but its like they aren’t really here. Like they are already dead. Let me clarify, I don’t feel that way, but Doctors treat me that way. Not my EP of course because he is my friend and confidante in the world of Brugada. Also my primary Doctor is the absolute best you can find. She’s not afraid of me and listens to me. Pretty much, whoever was my Doctor before diagnosis stuck with me. But to the rest of the medical field, I am a liability. I have noticed, since diagnosis, Doctors are very hesitant to treat me for fear of causing cardiac arrest. When they see me for the first time, and I go over my diagnosis, they look at me like they saw the devil. Like Im some demon that came to steal their medical license or smack malpractice on them. Ive seen the nervousness, the annoyance, the fear. Do you all know what Im talking about? Something as simple as a headache, or a common cold, or some smaller ailment, is like a curse because most Doctors prefer a “hands off” approach with Brugada patients. Look, I understand…a little. A Doctor doesnt want to mess up and cause death. We are already one breath away from it so who the hell volunteers to take us on as patients? But you know what? We are still alive. We will get sick and have stomach aches, headaches, tooth aches. We will still need care for these non cardiac related issues. Stop treating us like dead men walking. “Hey your ready to drop dead any second anyway! The sniffles is the least of your concern!” Im sick of this attitude. If your afraid, then how about informing yourself a little bit? How about becoming familiar with what aggravates Brugada? What meds are forbidden? Knowledge is power…I always say that. Even for Doctors.Everyone needs more wisdom. No one is exempt. Im getting very frustrated as you can tell. I have a lot of little medical conditions. Either they don’t listen to me because heaven forbid I know more about Brugada then they do. Or they treat me like Ive come for their blood by selfishly coming to see them for help? ” How dare you walk into my office with a difficult case!” Im not dead yet. We aren’t dead yet. We still need care for multiple things through the course of our potentially long lives. Stop being afraid or even worse, being down right annoyed that I have the gall to be your patient. Im not a leper who should be cast off to some remote place in the world. I guess we are dead men walking.But none the less we aren’t all heart, we have other needs and problems that we turn to you for care. Man up! Try living with this shit…

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6 Comments (+add yours?)

  1. Unsure
    Feb 29, 2016 @ 21:07:37

    My dad recently died a sudden death. He was perfectly healthy and there were no warning signs. Upon investigation the reason for his death was ruled unknown. He had just gone for a physical months prior and found out he had a right bundle branch block. At the time, this seemed rather insignificant. It was not until I stumbled upon Brugada syndrome as part of some biology and genomics research that I found so many connections between the syndrome and my dad’s death. He was completely healthy, died suddenly, had no health conditions or heart abnormalities (other than the RBBB). Upon autopsy they could not determine his death. He also died in the middle of the night. I also have a cousin on my dad’s side that died of SIDS. I don’t know if I’m trying to make myself see a connection or if there actually is one. It seems difficult to look into because my dad is now dead so he cannot be tested so I guess I would have to be tested. I just don’t know if I have enough evidence (coincidence, maybe) to actually take this information to a doctor and be taken seriously. I guess since this is a rather uncommon disease I didn’t want to be the person trying to find the “zebra” diagnosis in a field of horses. I would love input on if I’m trying to force connections or if these connections are genuine.

    Reply

    • AliciaB
      Feb 29, 2016 @ 21:18:37

      Hi there. Im very, very sorry about your father. I truly understand your pain.It’s hard to say if you can get anywhere with this if no one living is diagnosed. Brugada is not something found through autopsy because there is nothing structurally wrong with the heart.Generally the way a person is diagnosed post mortem is by having a child, sibling or parent who tests positive genetically. But genetics isn’t usually recommended or covered by insurance unless there is proof of possible Brugada. That is generally through a distinct abnormal EKG, history of arrhythmia, survived cardiac arrest or recurrent syncope. I remember when my father died suddenly I wanted answers. I needed someone to hear me but no one seemed to care. It was only after the doctor took notice of my abnormal EKGS that additional testing was ordered and a diagnosis was made. Being it had to come from a parent, and my mother tested negative, my father was unofficially diagnosed post mortem. Keep in mind there are other conditions that may cause cardiac arrest such as ARVD, WPW and Long QT. Also, cardiac arrest is very common and can happen for a ton of other reasons that have nothing to do with an undiagnosed heart disorder. Do you have symptoms? Have you seen a cardiologist and discussed this with them?

      Reply

  2. MioMyo
    Nov 13, 2015 @ 01:55:38

    Alicia, I wanted to ask you, did you ever ave a shock from your ICD? I face a possibility to have it too, so very interested in any info. Be well. Mio.

    Reply

  3. Anonymous
    Nov 07, 2015 @ 11:06:12

    You couldn’t have stated it more plainly! Thank you for your directness and honesty when it comes to “living” with Brugada!!

    Reply

    • AliciaB
      Nov 07, 2015 @ 12:56:14

      Your very welcome! Im always honest. Some may say no tact and abrasive but thats who I am. Brugada makes people bitter. Bitter about getting a bad hand of cards dealt to you. It comes across in my writing. Add to it thats BrS is rare and many Doctors have no knowledge about it makes it twice as frustrating. Throw in there the fact its hard to discover and diagnose and no treatment and you have a triple whammy. I always try to speak on behalf of people who just cant get the words out…

      Reply

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