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  • I have PKD and PLD.  If you do Facebook there is a page for each of these diseases run by wonderful women by the name of Elaine Drumond and Nana Nog.  Many people write in to ask questions and many people answer them.  You might want to try checking both pages out.  That being said, I have been having trouble with my liver cysts only recently, but they haven't affected my liver function so far, thankfully.  From what I've read the draining most often does not last for very long, sometimes only for days, so many people don't even have it done anymore.  They can fill the cyst with alcohol after draining it in an attempt to scar the cyst's inner tissue to prevent it from refilling, but again, it doesn't always work.  I'd get a second opinion if I was you.  And, think about asking your question in the Facebook forum I've mentioned as there will be many PLD patients who will see your question there...and answer it.  The forum's name for PLD is: PLD Polycystic Liver Support Group, and for PKD: Living With Polycystic Disease Support Group

  • I actually had a liver transplant due to a cyst growing outside and inside my liver.  I first had a surgery where they removed the cyst outside my liver, but they were only able to remove 75 per cent of it-----the remaining part was growing right down the middle of my liver.  They sewed the flap of my liver up to try to prevent the cyst from growing.  Three years later, the cyst was bigger than before.  The original cyst was 24 cm. in size.  After it grew back the doctors did not know what to do for sure, but were going to try to remove part of my liver and scrape the blood vessels clean of the cyst. When they went to perform this operation, they discovered the liver had changed------I was starting to develop cirrhosis (they think from the large cyst shutting off the blood supply to my liver).  They suspended the surgery at that point.  I was put on a transplant list and after many complications such as kidney failure and a seizure, I was boosted to the top of the list (it was at this point getting a liver transplant or dying).  I got my new liver about a week later, while I was still in the hospital.  I have been told that liver cysts and kidney cysts are actually quite common and cause no problems.  However, they tell me I was one of those unique individuals who's cyst was abnormally large and began to cause problems.

  • I have had cysts on my liver pre liver transplant, (3) they were said to be small but grew a little each year. I was told they were very common in the whole population, harmless and nothing to be worried about. I read that if they became large they could be reasonably easily drained. No one ever suggested this but maybe because I had cirrhosis and all the complications that come with hep C so they were the least of my worries. My situation was nothing like yours. Good luck I'm sure it will be straight-forward and not too invasive.
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