Living with a CHD

For the most part living with my CHD ( congenital heart defect) isnt too bad i get tired alot of the time ( to the point of falling asleep most days for a nana nap) and not been able to keep up with bear running home from school ( to the disgust of most of the other mums – who give me evils) i just cant run. Not only can my heart not keep up.

I also have weak ankles which means i fall over – a lot. I’m in discomfort of some kind all the time, weather its my ribs, my anlke, my back or my knees aching.

Then there is the stroke i had when i was 10. This means my speech isnt the best soo i hate talking – if its just me and my hubby or my best buddy i’m fine i can talk for hours. Put me in a room full of strangers and ill happily not say a word to anyone for hours. I’ve now got to a point where i avoid social situations as much as i can. i find it hard to communicate so i just dont bother.


I was born with Arotic stenosis. Which has been repaied loads Ive had a total of 6 heart operations – 2 via keyhole and 4 open heart ones.

Most of this stuff i can cope with , yes it gets me down somedays. But i always smile and wave because things could be a lot worse.

A few months ago my heart went into overdive and it just wouldnt slow down. Sat on the sofa my heart was doing 150+ . Aftrer been well for so long (11 years ish ) it came as a bit of a shock. This as as we found out was due to scar tissue from the operatoins ive had.

Living with a CHD is sometimes scary and only people who have gone through it willl understand what its like. This will problerly happen again. Then there is the constant risk of endocarditis ( which ive had twice ) Its an infection of the sac that surrounds the heart- anyone can get it but because ive had heart operations im just more supseptible to it.

At times its scary living with a CHD . But at the moment things are OK. Ive got my amazing hubby and my beautiful Bear.

Him & bear

6 thoughts on “Living with a CHD

  1. I can imagine it must be a little nerving at times but you sound like you have coped really well with this. I have SVT which is nothing like yours but it does make me nervous, I had an ablation but it didn’t work and would need a more intrusive heart surgery which still may not work so have decided to not do it as SVT is more troublesome than anything else

    Laura x

  2. Your blog post was very touching. I was born with a congenital heart disease too, mitral stenosis but thankfully, when it was picked up (at 16 months old only! after many other diagnostics false, crazy on only a consequence of the initial heart issue, from pneumonia to anorexia), I “only” had a open hearth surgery that fixed me for good. However, I do know that it has affected me on many levels (relationship with my family as I spent so many weeks in the hospital away from my dad and brother, self-esteem, …). I can imagine how your ongoing condition might shape your every day life but you are strong and you can make the most of your every day life!

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