Congenital Heart Block

Join the Conversation on
Congenital Heart Block
289 people
0 stories
9 posts
  • About Congenital Heart Block
  • Note: The hashtags you follow are publicly viewable on your profile; you can change this at any time.
    Newsletters
    Don’t miss what’s new on The Mighty. We have over 20 email newsletters to choose from, from mental health to chronic illness.
    Browse and Subscribe
    What's New in Congenital Heart Block
    All
    Stories
    Posts
    Videos
    Latest
    Trending
    Community Voices
    Community Voices

    Do people ever point out your scars? Or ask you about your scar?

    <p>Do people ever point out your scars? Or ask you about your scar?</p>
    4 people are talking about this
    Community Voices

    What is your take on this quote?

    <p>What is your take on this quote?</p>
    5 people are talking about this
    Community Voices

    What is your take on this quote?

    <p>What is your take on this quote?</p>
    Community Voices

    My Journey with CHD

    CHB/NL, also known as #CongenitalHeartBlock in Neonatal #Lupus, and in the medical field a very rare or uncommon Congenital Heart defect. Congenital heart block (CHB) is thankfully a rare occurrence. It affects only one to five percent of babies born to women with systemic lupus erythematosus (SLE).

    I was one of those babies, I was one of the babies that thankfully survived, thanks to the knowledgeable heart specialists and surgeons at the IWK, and I survived everyday life because I am a fighter and warrior, with a hint of savage hidden in there. I fought alone and hid the pain from pretty much everyone, everyday walked around with a smile and laughter and walked out the same, bullying never really phased me and I think the ones who tried quickly realized that, I believe the reasoning of that was I always had it stuck in my head that I’ve been clinically dead more then once and my mental strength can easily keep up with my physical strength and simply shrug the hate and bullying off after a bit.

    I wanted too specifically talk about CHB and how it took not just a physical and mental block out of my life but also the good that comes out of it, the outlook that I have that I feel is very much different from someone who is healthier or someone who hasn’t seen the things I’ve seen or heard the sounds I’ve heard. And also how I cope day to day with the #Anxiety and PTSD. We hate too explain ourselves or at least I do sometimes, but I have too stop and think what the heck. These people truly don’t know what it’s like and want to learn, why don’t I stop and quickly educate them, and I have no shame in doing so, growing up it was very hard for me too explain what I have and how it effects my daily life, but now all I say to the ones who are wondering is simply just ask. I was always told “well you have pretty much lived through it all” but I haven’t, I’ve lived though my battles and have come out with a few scars but the scars (physical,mental and emotional) have mostly healed, unfortunately with what I have and how I am alive I must go through a surgery every 7 to 9 years, that one day brings back memories and a curtain flashback, a flashback of being wheeled into the OR and looking back to see my parents holding each other; watching me go through the notorious double doors. When I bring that up, people ask if that phases me, and the truth is I don’t let it. I’ve had more surgeries then I can truthfully tell you off the bat and ever since the day that vision stayed with me I’ve quickly developed trust in the doctors,surgeons and nurses.

    CHB for me is like someone squeezing your chest really tight when you try and run a bunch I can feel my heart struggling to pump the blood, I can feel the air in my lungs struggling to enter and bring oxygen into my system. It is somewhat like breathing through a straw while your heart feels like it wants too explode and just stop at the same time, I get shaky and my lips turn blue, but luckily that hasn’t happened in a while. Surprisingly I am very active, I stay fit and stay pretty consistent at a healthy weight. I stay at a healthy and happy me, and I have proven no one will change that, if I am in a relationship or not, I will still be very active and I will stay at my healthy state, because it works. Sports sports and more sports with CHB. I live in Canada for the people who don’t know, and everyone knows our favourite sport. Growing up I wasn’t able to play Hockey, football, rugby or soccer. I played basketball for a bit, and grew up golfing with my Grandfather but the one thing I loved was biking, I grew up in a sport family especially with my Brother Mike.

    Music is the big thing, if you haven’t already realized I live for music, it has saved my life. I started drumming when I was 4 and a half, I remember going up the road too a family friends house and jamming with them, then when I turned five my parents surprised me with a drum set, a CB junior set we got in Moncton from the one man Ive always gone to since that day to get my drum stuff, when I was in middle school A few friends and I had a jam band and would just hang out and play music at each others houses, in high school I played a little more on stage, here and there. The rest well most of you know, When I was going into grade ten I was offered a position at the boardwalk and Ive been there since, I started volunteering and hustled and I am still there. In grade twelve we had a big drama festival coming up and I was approached with the idea of a full 30 minute soundscape, I was just given a few run throughs of the play and a script to work off of and for five and a half months I built one of the best things till this day that I have made, won multiple awards at the provincial drama fest and the Atlantic festival then It was off over seas.CHB has its times of pain and struggling but it also has a ton of good in it, I learn everyday about new things, new people and get too meet new warriors I like too call my heart family. Why did I write this? Well last night I had a struggle, a sudden heart pounding while I was driving home from work,so I pulled over put my car in park, Took a few deep breaths and thought one thing. F**k CHD.

    Community Voices

    Spent the day in bed

    <p>Spent the day in bed</p>
    4 people are talking about this
    Community Voices

    A throwback to a summer health episode #CongenitalHeartDefectDisease

    Last night on the way home was one of those moments, the moment you question “should I call for an ambulance or just wait it out”, I haven’t had too call an ambulance in two years so I waited it out. What I had was pounding of the chest. Most likely a lack of oxygen in my system because I haven’t gotten many full breaths in that day, thanks to allergies. So I waited on the side of the highway for a few minutes and let it pass, then went home. CHD, wait I want to talk about CHB Congenital Heart Block in Neonatal Lupus (3d degree) and how I am surviving one of the rarest CHD’s. Truthfully I am as healthy as I can be, well without going super stingy and overboard, I stay active everyday both physically and mentally. I surround myself around friends and family who make me happy to be around who make me smile,laugh and enjoy life, I cut people that are toxic pretty quick, not too be rude but more as protection. I’m a really shy person I think it hurt me more then helped, I grew up in the woods, out of town, and adapted to that, I had my friends houses that I went too pretty much every weekend but a lot of time was spent alone. I used to be in a local rowing club, it was two times a week and I loved it, but music was truly my thing. I started drumming when I was 4 got my first kit when I was 5 and haven’t stopped playing ever since, I took lessons from grade two until grade twelve. Today I still work in the music industry, I still work on the boardwalk and do install jobs. CHB put hurt in my life, like the tightness in the chest or tiredness/ borderline passing out, but also put a lot of joy and learning experience in it as well. I love life, thanks to CHB I have a different view then someone who doesn’t have a and I feel almost lucky, maybe it was because I’ve been clinically dead more then once or maybe because I was brought up to enjoy every moment in life and appreciate everyone who is in it. CHB and a , isn’t always a burden on life, it can also be a blessing. Because it makes us stronger, that’s why they call us warriors and fighters.
    #MentalHealth
    #RareDisease
    #CongenitalHeartBlock
    #ItsOKMan

    Community Voices

    Can Christmas shopping with #CongenitalHeartBlock be a longer process?

    The truth is it can be.

    We all know the scene around this time of the year, especially in the malls and stores, the hustle bustle inside and out, and sometimes it can get a little overwhelming (mentally and physically.) Sometimes you have to think is it really worth trekking through the walls of people to get that one thing that is %70 off; or can I just get it online and hope it gets here on time?

    Here in Canada our national postal service went on strike at the busiest time of the year, they recently have gone back to work but we are still expecting delays. So this year I decided to skip the online shopping and go do it on Black Friday!

    Before the day came I made a quick but smart plan! (Well at least I thought it was pretty smart and my friend Nic thought so as well)

    I simply looked up the time all the stores we wanted to go shop opened at (which was 7am for nearly all of them) I thought “well many people will probably work today so most will go in before they work” so we went in at 10am and the malls and stores weren’t that bad. So that actually worked!
    We didn’t miss that many deals as people had to leave for work and couldn’t get all that they needed, I asked some employees if it was busier in the early morning and everywhere we went they said the best time to shop Black Friday was actually 10am to 11:30am. Makes sense because many will try and take a half a day off or come shop on their lunch break.

    We started at the stores we knew wouldn’t be as busy and worked our way to the busier places. While in the store we just took our time through the stores and looked at all the things we could get but didn’t bother, we stuck to the lists we made or the items we saw in the flyers that were “killer deals”. Throughout the day I had to sit down and have a break for a minute or wait in my car while my friend went in to get something he needed. That process worked really well and I ended up making it from 10am to about 3:00pm when we both had enough. I ended up getting all I needed and so did Nic.

    So over all, the main problem I see is rushing in at the busiest time and rushing through the hustle bustle, then paying the price the rest of the day, when you are having to sleep when you could possibly be still shopping.

    Shop till ya drop people!

    #Shopping
    #Makeaplan
    #Pacemaker
    #CHD #MentalHealth

    Liza Morton

    Growing Up and Surviving Into Adulthood With a Congenital Heart Block

    Growing up, people told me to concentrate on the positives. But they didn’t understand that we are our stories and mine emerged from difficulty. When they rejected that they rejected part of me, and they asked me to do the same. I didn’t understand that at the time. I just knew that my heart condition was hidden. That most of the very bad stuff happened where no one else could witness it. And it wasn’t OK to talk about it openly because it made people look at me with disgust, pity or alarm. Children don’t like that. So, I learned to keep that part of myself private. I liked it better when they said I was brave. So, I was brave and stoic. Best of all was when I was treated just like other kids. It took a tremendous effort to function like other kids but it was worth putting the effort in, even though it left me feeling shattered. But that little girl, in a cardiac ward, is central to who I am.   I did not have miserable childhood. I was happy enough. It was more considered. There is a lot of common sense involved in safely navigating life with a heart condition. It means being old before your time, and not just physically. So, for example, when my friends were doing headstands I had to think it through. When they spontaneously flipped themselves upside down, I observed. It looked easy enough but the thought of trusting my own body to turn itself upside down seemed impossible. I would run through the possibilities: What if a lead came loose? What if my pacemaker fell off my heart? Was it worth risking my life? But everyone else was doing it, why should I be different again? How could I explain to everyone why I wasn’t joining in, without drawing attention to myself? When you put too much thought into anything like that it loses its joy. I tried it once, falling flat on my back, smack onto the grass. Although nothing cardiac happened, I didn’t bother trying again. This is the kind of thing I mean. What other kids took for granted wasn’t always mine to do so, like trusting my body. We didn’t know how long I would live. Uncertainty was everywhere. The doctors would try to give us confidence in my life. But we figured out pretty early on it was false confidence. Nobody really knew anything. That’s what happens when you grow up with pioneering treatment. A “miracle baby.” I was the youngest in the world to be fitted with a cardiac pacemaker when I was just 11 days old, in 1978. I was born with complete heart block. My heart beats at just 40 times a minute, which is not nearly often enough to keep me alive. So, they took me to theatre and implanted a pacemaker on my tiny heart. In these pioneering days, the pacemakers were unreliable. They were also set at a fixed rate, far from physiologically normal, limiting me physically. The first one failed and I was returned to theatre less than 24 hours later, suffering from a stroke in between. I spent the first six weeks of my life in an incubator before going home where my mum did her best to love me better. It was a tenuous journey. By the age of 7, I had been fitted with five pacemakers each by thoracotomy. I now host my tenth and counting. Years later, I found a research paper detailing the pioneering work of fitting implantable pacemakers to infants during the late 70’s and early 80’s. I am the youngest baby in the study. For each child they weighed up the pros and cons of fitting a pacemaker. I was doing so poorly there was not much choice. Some of the children who were healthier than me were not fitted with one, the risks deemed to great to justify. Some of them died during infancy. I feel uncomfortable and sad about that. I am not sure I understood that I might die. But, I knew I might not live. I know that doesn’t make much sense but I don’t remember planning in my head for an adult future like other kids did. I didn’t imagine my wedding day, having children or where I might live or work. The thought of dying didn’t really scare me. I’ve always had a sense of spirituality, peace and calm around death. It is life that’s caused me all the trouble. I don’t want you to think I hated the hospital, because I didn’t. It was like a second home, the one place where I felt like myself. I didn’t have to pretend to be normal when I was in the hospital. And, my cardiology team was there with me. That made me feel safe. Yet, unimaginably horrible things happened to me there. I was taken from my mum by strangers to a sterile room to be “sent to sleep” and made better by way of needles, oxygen masks, scalpels and the overwhelming smell of antiseptic. It is all a blur of feeling woozy, vomit, cardboard sick bowls, the metallic taste and smell of blood, bleeping of a heart monitor, broken bones, breathlessness and being attached to wires. Learning the stuff of existence from scratch, time and time again; to breathe unaided, eat, go to the toilet, talk, walk, with the goal of going home and living as normal a life as possible. Dignity is something you try to cling to in the hospital. It would be helpful if this was made easier. Lots of small things can add up to the process of being anonymized, dehumanized and disempowered from the starchy, backless hospital gowns, being spoken about in the third person to not being listened to. When I was around 3 years old, the horror of it all leaked out, momentarily. My mum, brother and I had planted cress seeds in used ice cream containers, one each, filled with soil. I had been quite excited about the notion of growing a plant from tiny seeds by ourselves. We placed the containers underneath the sofa in our living room to germinate. When we retrieved our boxes the soil was punctuated with rows of neat, green stalks, each topped with two small leaves. They filled me with complete revulsion, a whole bodily kind of disgust. Usually a quiet child, I shocked my family by screaming uncontrollably. To me, the cress protruded through the soil, just like black wire stitches did through my skin after surgery; lined up, like sinister, unwelcome, unnatural invaders forcing their way through. My mum threw them in the bin. We never planted any seeds again. The rest of the time I kept a tight lid on it. I think I should have been taught ways to express my distress. But, the truth is no one really knew that at the time. Everyone who cared was just muddling along doing their best for me, and keeping themselves together. You just get on with it when you don’t have a choice. As a teenager, it became apparent that I would probably survive into adulthood after all. With this realization dawned a fresh set of concerns. How could I ever hold down a proper job when I needed to sleep so much? Would anyone ever love me enough to take on the burden of my health, accept my scars and the fact that I was less than normal? What if I ended up homeless, jobless and alone? I wasn’t preoccupied by these worries but they were there nonetheless, unspoken, vaguely articulated in the back of my mind. Part of me thought, “What the hell?,” propelling me to live in the moment, knowing all too well here and now is all any of us can claim. Although there is no cure for my heart condition, I am too old now to die young. And I have achieved the things I didn’t dare dream of. I am married, I have a healthy 11-year-old son. I have worked hard to educate myself so that I can work part-time as a Psychologist. I am blessed in many ways. And the fact of what it has taken to get me here makes me enjoy everything I have 10 times over. But it isn’t just as simple as that. If life has taught me anything, it is that happiness does not come from ticking the boxes. It comes from feeling whole, and the light and the shadows cannot be separated – our stories only feel authentic when they are complete. For me that has meant accepting that part of me will always be that little girl with a heart condition and giving her a voice. We want to hear your story. Become a Mighty contributor here. Thinkstock photo via jetFoto.