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.
Very moving post, my son has a CHD and is doing so well. Wishing you well
It must be terrifying and the worry must get you down at times. I hope everything is ok xx
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
Oh gosh you do have to go through it each day don’t you, lots of hugs
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!
Great that you have chosen to share your story and raise awareness of CHD. I hope you are ok at the moment. Lx