For years when people asked what was wrong with my heart, I told them "the bottom of my heart is twisted and that is why I have a pacemaker" (getting a pacemaker is a whole other story - one to come though, of course as my blog blossoms). The people asking this question always put the focus on the 'pacemaker' part, never the part where I said my heart was TWISTED. Surely, that is more interesting than the pacemaker. However, I grew to understand that without one, you can't have the other - with my defect anyway.
It's important to realise that for me growing up I wasn't very aware of what exactly was wrong with my heart. To make it easy for me my parents told me that if I had to explain to anyone what was wrong with me I just have to say the one sentence, which is now embedded in my head for the next eternity "The bottom of my heart is twisted." Now that I am a (sort of) responsible adult I have decided to properly research what my heart defect is and what it means for me to have to deal with it for the rest of my life. So if you are reading this and haven't got a clue what is going on, I am kinda in the same boat as you, so be kind!:)
So in order to properly begin this journey on how I have been keeping up with the pace, it's important that we understand what exactly CCTGA is by knowing first how a normal heart works. According to the American Adult Congenital Heart Association:
"A normal heart is divided into two sides. The right side
pumps blood from the body into the lungs. The left side
pumps the blood from the lungs out to the body. Each
side has an atrium and a ventricle. The atrium acts like a
“waiting room” for the blood. The ventricle does the hard
work of pushing the blood out to the lungs or body. At
the entrance and exit from each ventricle is a valve, which
acts like a door. These valves allow the ventricle to fill
with blood from one side, and then push it out the other."
"The right ventricle is designed to give the blood a
gentle push to send it to the lungs. It is bigger than the
left ventricle and does not have as much muscle. The
left ventricle is designed to give the blood a strong push
out to the body. It has less space inside because its
thick walls take up more space. The valve between the
left atrium and ventricle, the mitral valve, is the body’s
strongest valve. It is designed to stay shut against the
strong push of the blood out to the body."
With my defect however...
"the two ventricles and their attached valves
are reversed. Your weaker, larger right ventricle grows on
your heart’s left side. It pumps your blood to your body.
Your stronger, smaller left ventricle grows on your heart’s
right side. It pumps blood to the lungs. You also have
your body’s weakest valve—the tricuspid valve—serving
as your mitral valve."
A picture might just make this a bit more easy to understand:
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It was some time in maybe May of this year and I was getting another pacemaker check done in the Mater Misericordiae University Hospital and my Congenital Heart Nurse was in the area at the time and had a little chat with me, general chit chat about me, college and my heart. I remember she said that I wasn't special, that she saw cases like mine all the time. Looking back I think she was just saying that to me to provide some reassurance and to stop me from letting my ever growing fears that I had about my defect take over me.
"About 0.5%–1% of all babies born with heart defects
have CCTGA. This means there are about 5,000–10,000
people in the United States with CCTGA."
"We do not know enough about what causes CCTGA.
The studies we have now suggest that CCTGA is rarely
passed from parent to child."
"In the womb the heart starts out as a simple tube. It then
bends in two, creating the right and left sides of the heart.
In CCTGA, it folds in the wrong direction. The ventricle
meant to grow on the right side is on the left. The ventricle
meant to grow on the left is on the right. Because the
valves are part of the ventricle, they are also reversed"
"Some babies born with CCTGA have heart murmurs, heart
rhythm problems, and/or show signs of heart failure. If they also have a ventricular septal defect (VSD) they may also
be cyanotic (blue). In these cases a diagnosis is usually
made in infancy. However, it is not unusual for CCTGA to
be found later in childhood or adulthood. This is because
you can have no symptoms and have CCTGA. Often it is
the start of new heart symptoms that lead to a diagnosis of
CCTGA."
Considering the size of the United States, those numbers are tiny, which means we that have it are more special than we may think. The information that I have found has come from one American article, unfortunately here in Ireland there is no articles that I have come across over the internet. It certainly makes having this defect a little lonely but also shows that I am a rare gem of an individual.
Until next time,
Grace
x
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