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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47 Comments (+add yours?)

  1. Christine
    Sep 04, 2017 @ 16:07:03

    Hi my name is Christine. I’m writing on be half of my step daughter. Her biological mother had a fainting spell last week that landed her in the cardiology wing of our local hospital. After 3 days of testing they are throwing around the term Brugada syndrome but saying it may take 2-3 months for results. Meanwhile HER mother was visiting her last night and died suddenly in the bathroom of her hospital room. We don’t have the cause of death yet but everyone seems convinced her mother had Brugada. Our concern at this point is to get our 9 year old daughter tested but we don’t know how to talk to her about it. Also she is type 1 diabetic that she inherited from her father. Sad times for us and would appreciate any advice you can give.

    Reply

    • AliciaB
      Sep 04, 2017 @ 18:07:58

      I’m so sorry to hear about this. Your poor step daughter losing her mom at only 9 😦 I certainly wouldn’t bring it up to her until it’s certain. And even so, even with my own kids who have the gene, I tell very little. If you bring her to a cardiologist they will do an EKG and most likely a genetic test. I would just say they are tests they run to be safe and say no more. Less is more right now.Once things are a little clearer maybe break the news lightly if she does have it because the first thing she will do is think she will die because her mom died. That’s what I thought…my father is gone and that will happen to me. Did her mother get any testing done that can be used to assist your step daughter ?

      Reply

      • Christine
        Sep 04, 2017 @ 18:35:25

        Thank you for the response! Actually her mother is still alive and in the hospital awaiting test results, it was HER mother (my step daughters grandmother) who passed away last night unexpectedly while visiting my step daughter’s mother. It’s all so strange but that is the situation right now. Will the results of the test really take 2-3 months? And my step daughters mother is saying she is having an IUD put in tomorrow morning before even having the results come back, is that normal? Sorry to unload all this here just really confused about all this and very worried for my step daughter! I love her so much and she’s already type one diabetic with a pump for that so if she has this too it will be so overwhelming. Thank you again for talking to me

      • AliciaB
        Sep 04, 2017 @ 18:41:53

        Oh I see now. Genetic testing results take 6 to 8 weeks. Probably closer to 2 months. At least mine did but I think some have definitely waited longer. Brugada is mainly diagnosed through an EKG.It’s like making a big puzzle. The more pieces you have, the clearer the picture. However, you can still tell what a picture is without all pieces. Genetics helps confirm diagnosis. It’s an added puzzle piece. But the abnormal EKG is key because its distinct. Add fainting (a huge warning sign!) and family history of sudden cardiac death, it ups the risk factor and makes them more likely to want an ICD for the patient.

      • Christine
        Sep 04, 2017 @ 19:01:46

        Alright! Thank you so much for the information and your inspiring blog! I hope you and your babies stay well and strong!

      • AliciaB
        Sep 04, 2017 @ 19:13:16

        Thank you Christine. Keep in touch and let me know how this all turns out. Sorry for the loss to the family 😦

    • Samantha Aumaugher
      Sep 17, 2017 @ 14:17:36

      You could ask the cardiologist about a procainamide challenge test which should trigger the brugada pattern if she has it. That doesn’t take long, but I don’t know if they give that to children. My sister, myself, and 5 of our grown children have had that test and so far just my sister and I have tested positive. According to my doctor it doesn’t mean our children don’t carry the gene, but that they aren’t symptomatic and aren’t likely to become symptomatic later on, so their children will still need to be tested unless the specific gene can be identified, and that happens only about 30% of the time. We will still do genetic testing and hope they can identify it. If that doesn’t happen, then the procainamide challenge test will be available if they (grandchildren) have symptoms, or when they reach adulthood.

      Reply

  2. Scott
    Aug 11, 2017 @ 01:38:31

    Hello, I just have been diagnosed with Brugada Syndrome. I found your article very interesting. I’m a male. I’m 46 and very active. Love to excercise. My question to you is are you still able to excercise and lead a normal life? I had a defibrillator implanted. I hope to hear from you! Thank you for reading this!!

    Reply

    • AliciaB
      Aug 11, 2017 @ 08:23:20

      Hi Scott. You should discuss with your doctor your limitations because he will know you best 🙂 For me personally, I can exercise as long as I don’t get my heart rate too high. I walk, swim, ride bikes, and I have a horse I ride. I still remain active but try to always be aware of being hydrated, having electrolytes balanced and keeping a close eye on how I feel and what my heart rate is. One thing doctors worry about with exercise is getting too hot, as heat aggravates Brugada Syndrome, so be sure to keep an eye on that 🙂

      Reply

      • Scott
        Aug 11, 2017 @ 13:05:40

        Hi Alicia. Thank you for getting back to me. The doctor told me to try to not let my heart rate get above the 130 range. I wear a Fitbit. Do you have one? Does it work well for you? I am on a medication called quinidine glutanate. It treats this Brugada. What a shock I have been active all of my life. Hopefully you can do things you enjoy. I’m just starting with this so if you have any info that you could share that would be helpful. Thank you!!

      • AliciaB
        Aug 12, 2017 @ 07:42:32

        I actually just got a fit bit to keep track of my heart rate. I love it. In a quick glance, no matter what I’m doing, I can see my heart rate. Very convenient! You can still be active just modify. I use to do aerobics like Zumba but my heart would hit 170. I’ve also heard that activities that give an adrenaline rush are a no no too! Like sky diving and bungee jumping, etc. You just have to find things that satisfy your need to be active but at the same time keep your heart in the happy zone. I’m not on quinidine. That is for active arrhythmias and I’m lucky I do not have them…yet

      • Anonymous
        Aug 15, 2017 @ 05:33:27

        Thank you for the reply. I was alos told to get all of my family members checked for this. That scares me. I have a 25 year old daughter that is very active and likes to do crossfit workouts and run. I told her about this and she told me that when she was lifting weights last week she had a heart rate of 175 and that was odd she said. She said it felt like it was beating very fast. Also I think my two sisters should get checked. I was reading your story about your kids. You said 3 of them have it? How have they adjusted? do they have defribrilators? I appreciate any response from you. Thank you.

      • AliciaB
        Aug 23, 2017 @ 06:26:32

        Not every person who is diagnosed with Brugada gets a defibrillator. There seems to be many factors involved in deciding who gets one. My children, have the gene, but no symptoms and normal EKGs, therefore they don’t have defibrillators yet. The gene means they have the potential to eventually have abnormal EKGs. That is why they have annual visits with a cardiologist.

      • Scott Eger
        Aug 30, 2017 @ 21:03:29

        Thank you for the info. My daughter went last Monday to get an EKG and is waiting for the results. Hopefully it is normal. She is very active and athletic. I told my sister about this and she said she had some chest pain a couple of times. She said once it was so bad she felt like her chest was going to explode. I think she is going to get checked now. Have you ever had anything like that? I appreciate your response. Also what is the maximum heart rate you get to and still feel safe? I’m curious because a doctor told me no more than 130.

      • AliciaB
        Aug 30, 2017 @ 21:19:47

        I nevet quite feel right over 100. I’m almost always aware when my heart rate is over 100 because it pounds and takes my breathe away. I honestly try not to get over 130 because I start getting super paranoid then. I also think it’s because I generally have a low heart rate of around 60 to 65. So for it to be pumping away at 130 is still a huge increase for me. As far as EKGs make sure all suspected family members also get an EKG if they have a fever. Sometimes people have a normal EKG and it comes up abnormal with a fever. The heat of the fever unmasks it.

      • AliciaB
        Aug 30, 2017 @ 21:20:39

        And yes, chest pain can happen. I do get it at times and heard of many other Brugada patients who do too.

      • Scott Eger
        Sep 04, 2017 @ 21:19:18

        Hi Alicia, I never do get chest pain. I do get light headed when I get up from sitting tho. Not sure if that is from the Quinidine I’m taking or not. Are you on any meds for your Brugada?

      • AliciaB
        Sep 05, 2017 @ 06:57:31

        I take a beta blocker to help with the palpitations and sinus tachycardia. It keeps my heart nice and slow because it’s always running too fast. It’s in rhythm, but too fast. But otherwise, no other med. Generally the only med for Brugada is quinidine and that is for active arrhythmias which so far, I don’t have.

      • Scott
        Sep 07, 2017 @ 20:50:44

        I do also take Metoprolol which is a beta blocker. Is that the one that you take? I take 25 MG in morning and 25 at night. Also quinidine too. My arrithmias must be a little more active. Hope your doing well!!

      • AliciaB
        Sep 08, 2017 @ 15:12:48

        I take bystolic. If your not happy with it, there is plenty of different brands your doctor could try 🙂

      • Scott
        Sep 17, 2017 @ 07:55:46

        Hi, I was reading one of your comments. I do have sleep apnea as well. Is this linked to Brugada? Also since my ICD was implanted I get light headed and dizzy if I get up to fast from sitting or being down low. Do you have these symptoms?

      • AliciaB
        Sep 18, 2017 @ 12:02:22

        I have wondered if there is a link between sleep apnea and Brugada and I think I saw an article somewhere that confirmed it. But I can’t remember where I read it. Beta blockers can cause dizziness, upon standing quickly.

      • Samantha Aumaugher
        Aug 23, 2017 @ 08:55:28

        Scott, I was diagnosed in January and I ran/walked a half marathon in June in the Teton mountains at an elevation of 6100 feet. I set a goal of a heart rate no higher than 170 and just walked if I got close. I don’t go anywhere without my fitbit now so I can monitor my HR. My doctor told me there’s no reason I can’t do most of the things I did before diagnosis. …now I’m trying to figure out how I can shoot my rifle since I’m left handed and my defibrillator is right where the butt of my gun would go. The deer might get lucky this year! Lol.

      • Scott Eger
        Aug 30, 2017 @ 21:12:15

        Hi Samantha, thats wonderful you did a half marathon!! I was told by one of the doctor’s not to get my heart rate above 130. I’m going to do a little more research. It is easy to hit that rate. I’m still in the recovery stage until Sep 21. Then hopefully I can get back to the gym and also deer hunting!! Why is your ICD on the left? I thought they could put it on either side? I shoot right handed. They asked me that question before they put my pacemaker in in 2015. I had that removed to implant the defibrillator. I sure hope you can still shoot! Where do you hunt? I hunt in Wisconsin. I used to hunt Upper Michigan when my dad had his land there. Look forward to hearing from you.

    • Samantha Aumaugher
      Aug 31, 2017 @ 11:48:23

      Hi Scott, my doctor didn’t offer me a choice, just said it goes on the left because it’s closer to the heart. I have a combo pacemaker/defibrillator and he said that if my heart rate reached 200 I may get shocked so I set a boundary of 170 to which he said was fine. He gave me no limitations other than no jackhammers, chainsaws or arc welders. Lol. I live in the lower peninsula in Michigan and hunt both here and the UP. I took it up only a few years ago so still considered a green horn. Lol. Shot my first deer last December.

      Reply

      • Scott Eger
        Sep 04, 2017 @ 21:15:13

        Hi Samantha, Congrats on your first deer last Dec. That must have been exciting for you. I do not think I will be able to bow hunt on opening day which is in two weeks on Sep. 16. I’m sure I’ll get to go later in the season. My lifting restriction of 10# max is not done until Sep 21. My doctor that saw me at St. Lukes in Milwaukee said I should not get my heart rate above 130. I’m confused because it seems like everyone has a different opinion. I am going to the gym tomorrow morning for the first time in almost three months. I’m going to slowly get back into it. I know it will be difficult. I hope you can train yourself to shoot right handed!! Good luck!!!

  3. 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

  4. 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

  5. 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.

  6. 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

  7. 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

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

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

    Reply

  9. 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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