Polycystic Liver Disease

[Transplant2018]

I have PKD and had a kidney transplant 5 years ago - everything has been great I was also subsequently diagnosed with polycystic liver disease. Although my liver is enormous and filled with innumerable cysts, I was asymptomatic until recently and the cysts are now beginning to cause pain. I will, of course, speak with my nephrologist, but have been reading that when cysts are aspirated they usually just refill with fluid. Can any of you share your experience with polycystic liver disease?

[PostivelyJo]

hi , I had a transplant 41/2 years ago , I have pkd with liver involvement. My liver is large and protrudes but no symptoms. Due to fullness and discomfort I asked about a native nephrectomy but was first sent for liver transplant assessment . I was turned down for a liver transplant because liver function is fine. It’s a size issue only, at the moment. In February I had my left side kidney removed and the discomfort has eased considerably . I have been warned that my liver could grow to fit the space left , but nothing so far. My liver is be closely monitored . Like you I’ve heard that cyst drainage is a short term solution .

I’m so sorry the cysts are now causing you pain. Keep asking questions and monitoring yourself. I’d imagine tolerating symptoms whimsy being monitored by your team to see if it’s temporary would be my advice .

You sound like you are very sensible .

An annoying disease isn’t it !!!

[Winner76]

I have PKD , transplanted 4 years ago . I know I have cysts on the liver but was always told they’re harmless on other organs, I also have them on my pancreas . Im quite surprised that you can be diagnosed with Polycystic Liver desease. I got a CT scan on the abdomen only this week so the results should be interesting.

Good luck with your treatment x