My Surgeries-Made Easy

So when people ask me, 'Whats wrong with your heart?' I reply, 'I've a hole in it.' Then I think to myself,

'If only it were that easy...'

So here it is. A break down of exactly whats wrong with me and an explanation of both operations at present.. Made easy. ;)

Right Heart Dilation: Right side of my heart has became weaker and enlarged, meaning it cannot pump blood properly from that side,

Pulmonary regurgitation: A leak from my pulmonary artery causing blood a bit of blood to flow back into my heart rather than around my body,

Tricuspid regurgitation: Same as above but rather than pulmonary valve, the tricuspid valve is leaky,

Aortic regurgitation: Again, this is another leak coming from the aortic valve,

Subaortic stenosis due to fibromuscular shelf: I find this one hardest to explain.. this is basically because i had a correction of a sub-aortic stenosis, the obstruction grew back. This will become more clear in my explination of that operation futher down..

Ok, so thats what my Diagnosis is written down as on my hospital letters.. As you already know I've been through 2 OHS (Open Heart Surgeries). Now Im going to write about what they were and the memories I associate with them.

First off, like I've previously written in my first blog 'Living with CHD-From the beginning', my first operation was when I was 3 1/2 years old. After weeks of trying to get treatment from doctors, a man arrived at mums front door with medicine, telling her that I was to have surgery in 4 days time. That surgery is known as 'Correction of Subaortic stenosis'.
A Subaortic stenosis is an obtruction or narrowing at the left ventricle, just below the aortic valve. (See image).

Now, my 'obstruction' was natural, I had a hole in my aortic valve, and then my heart tried to repair its self, but, basically, it did it wrong. Rather than repairing the hole, a, sort of, flap of muscle grew in my left ventricle, causing obstruction.

To fix this, the surgeon opened up my heart just above the aortic valve, and the obstruction (flap of muscle) was revmoved which then, in turn allowed my blood to flow freely and smoothly from my heart chamber and around my body. then, just as easily, i was closed back up.

Seems simple really.. 

(Subaortic stenosis)

After the surgery my mum asked if i was better and would I be ok, the doctors reply? 'We don't know'.
Can u imagine being my mum at that time? To be told that even though they had just opened up  her daughter and given my heart surgery, the doctors didn't know if it'd work or not? They simply didnt know because it was the first time they had to do this operation in England for someone as young as I were, It was usually grown adults who would get that surgery, and because my body was to grow, they werent sure of an outcome.. They just hoped it would buy them time.. 

Mum says that i was well after the surgery but at a routine appointment about a year later, the doctors discovered that the obstruction had grew back and that they weren't sure where to go from there and just hoped I would be ok with it left alone until i grew older and needed surgery.

They hoped right, because it wasnt until about 8 years later that i would need surgery again, a few days before my 12th birthday. 

I remember the day that myself and mum were told that i needed the second operation soon, I didnt understand what exactly what was being said, I thought my cardiologist was just reminding us that surgery was an option for the future. I wasnt until i got home and mum explained to be that I began to realise the operation would be alot sooner than expected. I was to undergo another suergery in just a coupe of short months time.

This next surgery is known as a 'Ross Procedure', it's a bit more complicated than the first surgery. 
Again, its surgery on, mainly the aortic valve. My own aortic valve was replaced with my own pulmonary valve, which in turn was replaced with human donor tissue. 

Ross Procedure


Now the difference with questions after this surgery was that we were able to be given more specific answers..
Was I cured? Of course not, this operation has to be re done in '10-15 years' the doctors said. This would have left me between the ages of 22-27 facing my 3rd heart surgery.
Does it affect my lifestyle? Yes, no exercise, and possibly no children.

Now, here's the thing. At the age of 12 doctors told me i might not be able to have children, and that i may need surgery again when im 22.
Now, I am 22 with no known reason as to why kids can't be an option, so obviously, I am happy with not needing to worry about never being a mother myself.
But also, I should be preparing for an operation right now, but instead, doctors have told be i should have about another 10-15 or maybe even 20 years to go until i need surgery!! :)

How? We have no idea, i have my whole medical team confused as to how its possible and I have no idea how or why Ive been given such a long lifeline with valve which should be dead tissue by now, but hey, Im not complaining! :)