Today I'm going to talk a little bit about my CHD journey and the affects it had on me and my family.
My biggest hope is that through sharing my story I can connect and reach out to other adults and people living with CHD.
When I was diagnosed with CHD, more specifically Coarctation of the Aorta (severe narrowing of the main artery from the heart) and Bicuspid Aortic Valve, it was like an out of body experience. I didn't feel sick, I certainly didn't look sick, how could it be that my body had failed me so badly? then came the news of Open Heart Surgery and it felt like the floor had been pulled out from underneath me.
My diagnosis didn't come about like most normal cases, for a start I was 19 and my condition is usually picked up in children, so for my body to cope and adapt for 19 years is quite remarkable and something that surprised my doctors. My condition was picked up purely by accident after I had a fall off a horse. My doctor checked my blood pressure in the process of checking for concussion and was concerned at how high it was sitting in a young otherwise healthy teenager. This led to further tests and my eventual diagnosis. (not to mention my intimate knowledge of Echocardiograms 🙈)
My surgery was six hours on heart lung bypass to remove the narrow section and replace it with Dacron lining. The emotional toll was just as big as the physical toll.
There is a time no matter how much reassurance you have had that you're not sure I you're going to survive and that is a massive mental hurdle to over come and it takes a long time to recover from that.
I also had a kind of guilt about taking so much of my parents time and focus away from my siblings and duties at home. Looking back now of course they were going to be there and support me like they did but at the time they were completely valid thoughts.
I also suffered what they call the 'cardiac blues' this is a type of anxiety/depression that approximately 80% of patients of an acute cardiac event go through.
My biggest lesson from this is just how important it is to have a solid support network around you, your family and friends want to be there for you, let them in!
But it's not only family an friends there to support you, there is an amazing network of people to connect with through the Heart Foundation, Heart Kids and many other organisations that have been through similar experiences that are there for advice or even just for someone to talk to.
In a strange way I am so grateful for my CHD, it has led me to so many beautiful souls that I would not have ordinarily met and it has given me a renewed sense of who I am what I am capable of.
To anyone reading this who is on a similar journey or might be struggling, please know, you are heard, you are seen and you are not alone we are behind you, you got this warrior!!
I sincerely hope that my story resonates with people and together we can help bring awareness to CHD and the good things happening in the heart community.
Jess xx
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