Debbie's Story with ADPLD
ADPLD I have only liver cysts no kidney cysts and I have had no surgical treatment.
My name is Debbie; I didn't even know what PLD Polycystic Liver 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 Polycystic Liver Disease Support group 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.
