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Me at Easter, 2007 (Age 44)
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My Struggle
I was born in 1963 with 4 or more heart defects
(Tretrology of Fallot). I was also a blue baby
and I was not suppose to live. I had to have 2
shunts (1 at 6 mos of age and 1 at 22 mos of age)
to change the blood flow going to my heart. I had
to live being very ill until I was able to go thru
a major operation to repair the defects. With the
severity of my condition anyone who had surgery
did not live. I had to deal with very limited
activity. I had to watch kids play and also at
school I had to sit and watch. I use to get
depressed because I was so limited. I had a very
loving family so I made it through the tough times
very well. Finally when I was 10 I was able to
have my surgery (1973) I was the first of 13 to
survive. It was the longest open heart surgery
(almost 9 hours) at Boston Childrens at that time.
I was not suppose to survive, but once again I
beat the odds. The surgery changed my life. I
still had some limitations, but I was able to do
almost everything.
When I Realized I Needed to Rally!
The first surgery changed how sick I was and being
able to do what most people do. I still had to
have surgery every ten years to change valves, but
I was able to have two beautiful girls and also
now have a beautiful grandaughter. I still get
depressed sometimes when I see how a lot of people
I know are normal and not limited at anything they
do and I still have limitations. But then I think
of all the other sick people out there who are way
worse than me. I see it all the time and I think
how blessed I am. It was very tough growing up,
also very tough for my family. At times it still
is. I still have obstacles ( I caught Hepatitis C
from a blood transfusion from one of my earlier
surgeries and have many stomach problems) but that
is minor compared to what could have been. I have
lived to the age of 44 and very happy about
that.
What Worked For Me
Family and friends support have worked for me.
There was also someone there for me. Even
strangers helped when I was younger to help me
have my big surgery because of the cost. Its
amazing how generous people are. Whenever I get
down, I talk to my boyfriend or my family and they
always talk me through whatever is bothering me.
Never hold things in, things will only get worse.
The best support is talking to someone you care
about and if you can't do that, talk to a
professional or join a support group. Luckily I
have always had the support of family!!!!
The Progress I've made
I can't really answer this one. There was only
progress because of the surgeries. If it were not
for the great doctors of Boston Childrens I would
have never survived.
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