4 years since diagnosis

Today is the 4 year anniversary of when I was officially diagnosed. It wasn’t too long after that day that I started this blog. Although I have to say, I never treated it like a blog. I barely write on here. I don’t have photos and links and all that stuff. For me it is a memoir and a diary. I wrote because I felt it was therapeutic. I then decided to share it with hopes that other patients can relate or it would help them through diagnosis, the testing phase, surgery and recovery. And at times, I wish I didn’t have this blog anymore. I start to feel conscious about having my deepest thoughts out here for the world to see. But then I have people contact me and read and say I help them through it all and decide to keep it. I’ve looked over my entries from the last 4 years, and it isn’t many. It’s actual pretty amazing that a blog with only about 50 posts has been viewed the world over with tens of thousands of viewers. They say you can only make it as a blogger if you post often and professionally. But Im not trying to ‘make it’. I stay anonymous. I don’t want fame. I prefer not to be in the lime light. But instead of writing in a hand written diary, I type it up here and publish it. It’s weird, I know. Wanting privacy then publishing! Anyhow, as I look back at my original posts, they are very dark. They are depressing, dramatic and probably unsettling for some readers. I don’t feel now, like I did then. And there is a part of me that says I shouldn’t have those posts up in case it scares the hell out of some people. Sometimes I want to delete them. But then my husband tells me, it’s a journey and it’s important for people to see me change and grow and steady myself through the years. Yes, the beginning posts are sad. They level off and seem ok and go back to an abyss.Back and forth, good days and bad. But I try not to do that as much because I want people to have a normal life and hope. My thoughts for this anniversary, is that I do want people to see how I felt in the beginning but also how I started to accept my diagnosis and kept living and made a little peace with it. I hope whoever reads this understands that this is my diary, my thoughts, my feelings and by no means how everyone will feel. But also, see that with time, the weight of the diagnosis lightens a bit and you CAN move forward. Have I moved completely forward? Not at all. I’ve taken steps forward but I’ll never run, by no means. But you can have some hope and peace, even with Brugada Syndrome, and my online diary/ blog shows it 🙂

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21 Comments (+add yours?)

  1. Amber
    Mar 31, 2017 @ 12:46:27

    Hi my name is Amber what would they say was wrong before you was diagnosed with brugada I get tachycardia all the time and I get where my heart feels like it pauses my eye sight gets blurry and I get dizzy a lot but they doctor says I don’t have this I just don’t know anymore

    Reply

  2. Phil Snider
    Mar 03, 2017 @ 08:35:06

    Hi,

    This is a great site. I have a question on brugarda and tiredness below and would like some opinions please.

    I most likely have brugarda as my uncle has it and I have some of the symptoms.

    I’ve had an ECG which suggests brugarda – tho I’m having a follow up test soon to confirm.

    One of my dominant symptoms is extreme tiredness ( I believe this is linked to brugarda – as I have had blood tests for things like iron and potassium and it is normal) my question is do other people suffer from tiredness related to brugarda? I have done some research but I can’t find a difinate link.

    Reply

    • AliciaB
      Mar 03, 2017 @ 12:37:21

      Hi Phil!! I’m not sure if there is a definite link between Brugada and fatigue. I have thyroid disease which causes fatigue so I’m not sure where my tiredness comes from, but I assume my thyroid. There is alot of research to be done about BrS so maybe through the years they will discover more symptoms.

      Reply

  3. Samantha Aumaugher
    Feb 21, 2017 @ 15:30:14

    I was diagnosed January 30th and my sister was diagnosed last week. My kids and hers are up next for testing. I’m 49 and she is 47, and the doctors keep telling us that it’s next to a miracle that we lived this long without being diagnosed and that I saved generations of lives by going to the hospital that day. This is scary. We both have defibrillators but that seems like only a backup. What do we do to prevent getting to that point? How will this affect us as we get older? The kids are scared to death because they feel no one is taking this seriously because they don’t have symptoms. Yet. Where did you find answers for questions like this? Even the nurses and my GP have a difficult time helping because they’ve never seen this. Thank you for keeping the blog, we need to learn from people experiencing the same thing.

    Reply

    • AliciaB
      Feb 21, 2017 @ 17:41:16

      Hi Samantha! Unfortunately there isn’t much preventative care for Brugada because it’s a flaw at a genetic level. The only treatment is a defibrillator. There is medication for arrhythmia that some people can use but it’s generally used in tandem with a defibrillator. Also, be careful of overheating whether it be a fever, sun bathing or exercising. Be aware of what medications you can not take on brugadadrugs.org. Be careful to maintain electrolyte balance as well. As we get older, it supposedly gets worse (30s-50s) but then levels off in the 70s or so I’ve been told. I’m not sure there is any hard fast rule as even children have suffered with this. And of course we can always hope for a cure! It’s difficult for kids so just make sure they listen to Doctors orders! Where did and do I find my answers? Unrelenting research. Many doctors and medical staff don’t know what Brugada is. I get tired of it and feel I’m the best advocate for my health so I sit down and do the research. Matter of fact all my research and links I read I post on my twitter account. Kind of like a Brugada news feed. I don’t post all the links here as I don’t want to bog this site down and keep it more like a diary.

      Reply

      • Samantha Aumaugher
        Feb 23, 2017 @ 14:29:50

        Thank you, it’s difficult when even the professionals don’t know what they are dealing with. My daughter called the cardiologist and the nurse told her father’s usually pass it down to their sons so she should be ok. I could tell she had Googled it. I will definitely be doing my own homework and checking in on this page.

      • AliciaB
        Feb 24, 2017 @ 06:48:24

        Yes, they say Brugada is prominent in men but it is passed down to girls as me and my sister both have it from my father, who supposedly got it from his mother. And I passed it on to 2 of my daughters

      • Samantha Aumaugher
        Feb 25, 2017 @ 11:30:51

        How are your daughters being treated? They don’t have defibrillators yet do they? I want to know what to expect if my children are diagnosed, and if there is a set age they get a defibrillator, how they monitor the progression, etc. I haven’t seen much information about treatment for children. Thanks.

      • AliciaB
        Feb 25, 2017 @ 11:48:27

        3 of my children have the positive genetic test but no symptoms so they don’t need a defibrillator yet. A positive genetic test doesn’t warrant an ICD…yet. Even in adults they don’t really offer an ICD if the EKG is normal and there isn’t a family history of early cardiac death. What all Doctors look for is an abnormal EKG, fainting, arrhythmias,etc. Unless they see that, they generally hold off on an ICD. With my children, they are seen by their cardiologist 1 to 2 times a year to get an EKG. As long as there is no fainting or arrhythmia and their EKG is normal, they don’t need an ICD. Doctors are much more leery of offering ICDs to children because there haven’t been much studies on the long term effects of an ICD on youth. After all, there was a day when only the elderly got them. So children having them for decades and decades…well there isn’t much research. They offer it when its absolutely essential. From what I’ve seen in my own children and heard from others, they do genetic testing to see if they have the gene.From there it’s annual monitoring for changes in EKG and of course you call the doc right away with symptoms. They also like EKGs if the patient has a fever because if there are changes then, that may be a sign of manifestation of symptoms. It’s life long monitoring because with Brugada, it is expected to manifest when you are older. It doesn’t always manifest, even if you have the gene, but to be safe they check over and over.

  4. Vanessa
    Feb 21, 2017 @ 00:39:57

    Hello! My name is Vanessa and I was diagnosed with brugada when I was only 18. My ICD was placed a week before my high school graduation.. Talk about a great first big step into life. it’s been almost 4 years for me and it definitely gets easier with time but I just found this blog and I love it!

    Reply

    • AliciaB
      Feb 21, 2017 @ 09:15:06

      Hi Vanessa!! Happy 4 year anniversary! And I am so very happy to hear the diagnosis gets easier with time for you. That’s great news 🙂

      Reply

  5. Carolyn Thomas
    Feb 15, 2017 @ 15:06:24

    I think your hubby is absolutely correct: do not under any circumstances delete those very early blog posts, no matter how dark they appear to be now in hindsight. This is indeed “a journey, and it’s important for people to see me change and grow and steady myself through the years”.

    You felt the way you felt, back then. You felt it and you expressed it, as all freshly-diagnosed heart patients have a right to do when facing a life-threatening diagnosis. We can sink very low, then we feel a bit better, and sometimes we sink back again – “back and forth, good days and bad” as you say – and all of that is common and “normal” considering the circumstances. I only wish that hospitals would warn patients before discharge that depression and fear and anxiety are very common, temporary, and treatable.

    Without blogs like yours telling the unvarnished truth about how it was, we would live in a Pollyanna-like world of sugar-coated healthcare brochures about tapdancing through every medical crisis like a brave little trouper (which can just make us feel like we’re being weak or crazy if we don’t seem to have the same cheerful and positive attitude while we’re in the throes of the crisis!)

    We sometimes see this in oncology where some patients write articles and even books about how “cancer was a gift” or how cancer somehow gave them “meaning” in an otherwise meaningless life, which is just so much BS in my humble opinion….

    I have observed that whenever I write or speak about the really hard early times post-heart attack when I was struggling horribly to make sense out of a diagnosis that made no sense to me, invariably readers have really responded to that frank and open disclosure by saying things like: “Thank you! Thank you! Thank you! I thought I was the only one who felt this way….” I’m sure you have experienced that yourself here!

    We don’t have to provide the secret magical solution to feeling better. You are helping more than you know just by making your readers feel less alone!

    Happy 4th Heart-iversary, Alicia!
    cheers,
    C.

    Reply

    • AliciaB
      Feb 15, 2017 @ 17:14:23

      Thanks Carolyn! You are the best! At times I think I may depress people with the hard core truth. But then people tell me I say what they are trying to say, but can’t. It’s so easy to express my feelings yet others find it so hard. I express it for them

      Reply

  6. Carlos Ferro
    Feb 15, 2017 @ 11:52:44

    Hi,
    My name is Carlos and I am another victim of Brugada Syndrome.

    Reply

  7. Mommy
    Feb 15, 2017 @ 10:47:01

    Very proud of you and I think you are amazing! You have been a candle in the window for people all over the world who are trying to find their way back home after this overwhelming diagnosis. I am certain that a cure is not too far away. 💛💐

    Reply

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