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Hi,
my name is Sarah. I was born on October 29, 1981 with my
twin brother, Adam. I was born with a Congenital Heart
Defect, also known as a "CHD." The type of
"CHD" that I was born with is known as Truncus
Arteriosus Type 1. I weighed 3 lbs. 12 oz. at
birth. My brother weighed 5 lbs. 8 oz.
I was diagnosed with Truncus when I was born. The doctors
heard a murmur, but it's not like any other murmur. Mine
sounds just like a washing machine. I was not a blue baby
like many heart babies are. That's what's weird because
almost every single Truncus baby is blue. I did start
getting blue as I got older. When I get cold, my lips turn
blue and the beds of my fingernails and toenails turn blue
also. At this point, my circulation isn't very good at all
so no matter what the weather is like or what I'm doing, my
knees are a purplish-red color.
I've had three open heart surgeries at the ages of two, four and
seven years old. Now - a - days, doctors do the surgery at
a few days old. My doctors wanted to wait until I was at
least 20 lbs. to do the surgery. But I never quite reached
20 lbs. when they did the first surgery at two years. I
was only 18 lbs. I don't remember much from those
surgeries, so I couldn't tell you much about them.
I have also had other heart related surgeries which include
gallbladder surgery at the age of 10. I've read that many
heart kids have surgeries like that. At age 13 or 14,
(can't remember which one) I had brain surgery because I gave
myself a tattoo and it gave me blood poisoning. After
spending two weeks in the hospital for IV antibiotic treatment
for the blood poisoning, I went home. The day after I went
home I was back in the ER with a terrible headache. They
did a CT Scan and found out that I had three abscesses in my
brain. The doctors had to drain the abscesses and I was in
the hospital for another two weeks. When it was time to go
home, I had to have a central line placed in my chest because I
had to have another six weeks of IV antibiotics.
In
September of 1999, I had to have an Automatic
Implantable Cardiac Defibrillator implanted in my chest due
to Ventricular
Tachycardia. As of today, February 15, 2003, I am
having my defibrillator changed out on February 25, 2003 because
the battery is about dead. Thanks for reading my story and
please sign my guestbook before you leave.
To
see what a normal heart compared to a Truncus heart looks like click
here.
I'd
love to hear from you. If you have any questions, comments
or just looking for some support, please feel free to email me.
Please
sign the guestbook!
Copyright
Designs By Sarah 2003
Page set not for download. If you'd like to use it, please
let me know.
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