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Here is Debbie
Andrew's story:
My
name is Debbie Andrews and I have Polycystic Liver Disease. I didn't even
know what this disease was until I was diagnosed with it. I found out
I had PLD during a post delivery exam after the birth of my first and
only child in 1998. The doctor was palpating my abdomen and told me that
my liver was big. I then was sent for an ultrasound. I knew from the confused
look on the technicians face that I was in for an interesting ride.
I was sent to a parade of various doctors who knew nothing about my disease.
I finally was referred to Dr. Maureen Martin, a surgeon, who was able
to correctly diagnose my condition. Thus far I have had a deroofing procedure
performed by Dr. Martin in 1998 which provided temporary relief.
In 2003 after a miscarriage my liver reared it's ugly head again. This
time I underwent a liver resection, removing the left lobe of my liver,
which provided temporary relief.
In November of 2006 I began having problems again and underwent a sclerosing
procedure to provide relief for two very large cysts. They say this procedure
doesn't work for everybody and unfortunately it didn't work for me.
It was at this point that I learned about the trial for Octreotide, a
drug that they are hoping will reduce or eliminate the cysts in the liver.
I am currently participating in the first year of the study, and hopeful
that we will have positive results.
It is very frustrating to have a disease like PLD. Knowing that there
is no cure and that even a transplant would not heal you of this disease
can bring you to deep depression. I have suffered a lot of pain. I have
had to make changes in my life as to how I do things. I have had to watch
my family worry because they couldn't do anything to help me. At times
I have wondered how I would make it through, but God gives me strength
and He keeps me on my feet. I don't know what else I will have to face
with this disease. Until they find a cure I also have to live with the
fear that my daughter will have to go down this road, and I really don't
want that. I don't want anyone to have to suffer from this disease. Those
of us that do have this disease find great comfort in Linda's
Polycystic Liver Disease Support website and in each other. That is
why I was excited to hear about this page where we can post our stories.
It is one more way for us to hold each other up.
For those who are finding out that you have this disease, don't give up
hope. We are a strong group of people, ready to help you through whatever
you might have ahead of you. Be strong, have faith and know that there
will one day be a cure for this disease. Send an email
if you have questions.
last
updated:
Tuesday, May 27, 2008 1:35 PM
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