Congenital Heart Block

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

I thought this was appropriate for our theme this week. How do you feel when people ask you about your scar? Do people ever point out your scar? What do your say?
#adultchdwarriors #CongenitalHeartDefectDisease #HeartCondition #HeartDisease #HypoplasticRightHeartSyndrome #HypoplasticLeftHeartSyndrome #CongenitalHeartBlock #ChronicIllness

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What is your take on this quote?

I feel like this comes from many different parts of society. Doctors want to hear that either you are doing great or that you are feeling sick. There’s never an in between and when there is, it is almost as if they can’t comprehend that. You must be faking being ill or faking being well. I know from my personal experience lately since my open heart surgery last fall I’ve been in between. I know I’m doing so much better than before but I’m also not great. And that is hard for people to grasp.

#CongenitalHeartDefectDisease #HeartDisease #CongenitalHeartBlock #HypoplasticRightHeartSyndrome #hypoplasticleftheartsyndrome #transpositionofthegreatarteries #congenitallycorrectedtranspositionofthegreatarteries #heartconditions #heartattack #ChronicIllness #Disability #TetralogyOfFallot #adultchdwarriors

See full photo

What is your take on this quote?

I feel like this comes from many different parts of society. Doctors want to hear that either you are doing great or that you are feeling sick. There’s never an in between and when there is, it is almost as if they can’t comprehend that. You must be faking being ill or faking being well. I know from my personal experience lately since my open heart surgery last fall I’ve been in between. I know I’m doing so much better than before but I’m also not great. And that is hard for people to grasp.

#CongenitalHeartDefectDisease #HeartDisease #CongenitalHeartBlock #HypoplasticRightHeartSyndrome #HypoplasticLeftHeartSyndrome #TranspositionOfTheGreatArteries #CongenitallyCorrectedTranspositionOfTheGreatArteries #HeartConditions #HeartAttack #ChronicIllness #Disability #TetralogyOfFallot #adultchdwarriors


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.

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Spent the day in bed

I didn’t move, I couldn’t. I was glued to my bed all day watching Netflix and watching the world go by online. Somedays I need that, Somedays we all need that. For me a day like that was like hitting a reset button, both mentally and physically.
I over worked this past week because of New Years but I need the money, and now I pay the little price but to me it was worth it. I got to work with some legends in the music industry the TransCanada Highway Men. I work a local venue doing sound I have been there for about ten years and I love it. Work is hard for me, it is hard to keep up but that’s one big reason why I am self employed, I chose to be self employed and work mainly by a contract basis because I can control where I work and I can be in control of how I work. Today was a relief even with some pain and extreme tiredness.
Give it a try. #CongestiveHeartFailure #Heartblock #CongenitalHeartDefectDisease #MentalHealth #PTSD #CongenitalHeartBlock


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.


Shopping with a #CongenitalHeartDefectDisease

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!

#CHD #MentalHealth