2022 update

Its been so long since I checked in I thought I would write a quick post. Especially for the newcomers to my blog. Or what I prefer to call my diary. I am not on social media. I try to stay as anonymous as possible. I didnt start this blog back in 2013 to become famous or go viral. I started it as a devout Catholic offering help and care to people who need it when newly diagnosed. I typed up my “diary” so everyone understood they are not alone and their feelings are normal. That was my sole purpose. Is my sole purpose.I dont write here regularly because, as I said, Im not aiming to be popular. Nor should I (or you!) concentrate on Brugada day in and day out. Its not mentally healthy. Many dont even know my full name or what I look like lol. I can be reached here and through email. Yes, its 2022, the age of technology, but I prefer to be a little old fashioned and a bit anonymous 🙂 If you need me, email me at BrugadaGirl@yahoo.com.

Side note, and worth mentioning. I welcomed baby number 7 into the world in 2020. And guess what? My ICD malfunctioned while pregnant. I had to undergo surgery during pregnancy. Very risky indeed. But I did it! And me and baby turned out just fine. How many electrophysiologists can say they put a new ICD in a pregnant Brugada patient? Maybe Im the first ?! Also, no cardiac arrest yet. Nothing eventful besides a crummy, malfunctioning ICD.

Anyhow, just saying hello, God bless and reach out if need be!

10 Comments (+add yours?)

  1. Anonymous
    Sep 24, 2022 @ 19:03:38

    Hello, I wanted to leave this comment here in case it helps anyone who reads it. Thank you for your blog, it helped us feel less alone. My husband, 31 years old, was diagnosed with Brugada this week. He is wearing a Life Vest, a wearable defibrillator that insurance pays for that does not require surgery. We are also a devout Catholic family with two kids under the age of 3. My husband was experiencing fast heartbeat and lightheadedness before he was diagnosed. He has no family history, but a fever from COVID revealed Type 1 brugada in his EKG. Everyone thought we were crazy and overly anxious before the diagnosis because of all the urgent care and ER visits. He visited the ER/urgent care no less than 10 times, and we called 911 four times. When we found out he had brugada, before we got the life vest, we were very stressed. Of course we were terrified of him dying in his sleep, so he wore a pulse oximeter on his finger that measures heartbeat and blood oxygen. I stayed awake all night and laid next to him checking his oximeter every couple minutes (which would beep if the values got too low or too high). Unfortunately with brugada, it can be so sudden that the oximeter might not even register strange values and it might just think you’ve taken the device off if your heart suddenly stops. So I also had to watch to make sure the oximeter was measuring any values at all. I also listened for my husband’s breathing. This was difficult to do because I was also breastfeeding a 3 month old at night and my toddler sleeps in the same bed room. It was very mentally taxing because 24 hours a day, somebody had to be watching my husband to wait for him to pass out. I had to be ready to perform CPR and call 911 at any moment. Even though the likelihood was low that cardiac arrest would occur in those 10 days we were waiting for the Life Vest, we felt we needed to do everything humanely possible to prevent him from dying.
    The only way we were able to survive doing this for the 10 days it took to get the Life Vest was because my parents were able to come help watch the kids during the day so I could sleep. I was very grateful to them because I know many people do not have the luxury of having two healthy grandparents nearby. I would also like to thank Netflix, Candy Crush Saga, the Shadowhunters book series, and The Selection book series for getting me through those nights. But most of all, my Catholic faith and God and the patron saint of heart disease, St John of God. We said a novena to him and St Raphael during that week.

    Reply

    • AliciaB
      Sep 25, 2022 @ 06:47:16

      What an amazing wife you are and what a wonderful family you have! It sounds like your husband is getting great care from you! Is there a reason they are not giving him an ICD?

      Reply

      • Anonymous
        Sep 25, 2022 @ 20:14:39

        They consider him asymptomatic because he has never fainted, even though he has suddenly fast heart beat when at rest. They gave him a holter monitor and if they find a ventricular arrythmia they will give him an ICD.

      • AliciaB
        Sep 27, 2022 @ 16:37:42

        I always recommend that if you feel uncomfortable with your doctor’s opinion on diagnosis or treatment, get a second opinion! I wish your whole family well!

  2. Mila
    Aug 24, 2022 @ 04:33:29

    Two of my daughter’s uncles had died of sudden cardiac dead. Both died in the same day when they were 19 and 22.
    Today my daughter of 11 year old has been diagnosed with Brugada syndrome.
    I am devastated and I am so so scared.
    I read in an article of yours that 2 of your kids were diagnosed with the syndrome. I really just been researching online for answer about kids with the syndrome and I find nothing. I just really want to get some advices and answers about what should I do because I don’t know how to live with this fear everyday.
    I’m sorry to come like this. It’s just fresh news and I am really desperate.

    Reply

  3. Carolyn Thomas
    Aug 14, 2022 @ 15:48:31

    Hello Alicia and CONGRATULATIONS on Baby #7! I hope you and your toddler (and all the family!) are doing well and staying healthy. What a scary experience needing ICD replacement surgery while pregnant! You may be right – you could be a pioneer in this unique scenario.
    I continue to periodically share what you’ve written here (and also in your ‘EP Lab Digest’ interview) with my own ‘Heart Sisters’ readers and on social media – because what happened to you (six cardiologists missed your Brugada on all those EKGs – for years!?!) should simply NEVER happen. And repeating your story helps to keep the topic of cardiac arrythmia front and centre, especially for women.
    I’ve taken the summer off from writing my blog (decided I needed to write about something that fills me with PURE JOY – which is my new hobby as an amateur rose grower (specifically trying to grow roses in pots out on my little balcony). Just like living with a cardiac diagnosis, I’ve found that growing roses is all about our expectations! I may return to ‘Heart Sisters’ in the fall – or not (haven’t quite decided yet!)
    Take care, stay safe – enjoy your beautiful family.
    xoxo
    C.

    Reply

    • AliciaB
      Aug 15, 2022 @ 12:44:25

      Hi Carolyn!! Maybe it would be best for you to have some down time doing things you love that are not heart related.Thats why I took a break from blogging because it was forcing me to always think about my heart and health. It’s much better to do the joyful things! There is a time and place for everything.

      Reply

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