Polycystic Liver Disease (PLD): Let's support each other

Hi, I am new to the site. Anyone with advanced polycystic liver disease? My right lobe is completely taken over by cysts and there’s minimal healthy tissue remaining. Left lobe few cysts. I have been followed for years by top liver specialists. Had a fenestration, deroofing, in the late nineties and in 2014. Current recommendation is liver resection. Looking for others with similar cases of PLD. Thanks.

Hi @jmasti - welcome to Mayo Clinic Connect. I wanted to let you know I moved your post here so you could connect with a number of members all in this discussion specifically about polycystic liver disease:

- Polycystic Liver Disease (PLD): Let's support each other https://connect.mayoclinic.org/discussion/newly-diagnosed-with-polycystic-liver/

I hope that here you will connect with members such as @erikaclark @pachab00 @jawmeyer @iowachica and others who can share if they have an advanced case of polycystic liver disease or if they perhaps are close to someone who does. They may be able to speak to whether they have experienced a liver resection or if they are familiar with someone who went that route.

Glad you have had care from top liver specialists. How have you been feeling lately just day to day, jmasti?

Hello, my case is not similar to your current news.... In my case, the cysts were distributed throughout my liver and ranged in various sizes, with several measuring up to 30 cm. During surgery, they were treated using thermal ablation (burning), and my doctor removed more than 27 cysts and drained approximately 3 liters of fluid. About a year later, a few cysts returned, and I'm being monitored. I was unaware I had them until I ended up in the emergency room.

The doctor who treated me mentioned a 10-15 year return to surgery. Does this line up with your story?

@iowachica Thanks for sharing your story. Id say it was close to 15 years between my first and second deroofing and now another 20 years since my last surgery. However im being told that my best option is resection and removing tje right lobe. Big decision for me.

This may repeat my original post to some degree. My internist sent me for an ultrasound then a GI specialist who determined that I had PLD with innumerable cysts, two predominant. One relatively small, the biggest was 10 cm. That was drained then (when it refilled 2 months later) a chemical inserted that broke the cyst wall. I've had no problems since then, and that was 2-3 years ago. I did have a repeat check early last year. The cyst that had enlarged is now stable at 3cm. No other problems. I've been told by the GI specialist that PLD (without PKD) is benign and wouldn't shorten my life so I shouldn't worry about it. When my mom was 100 she had some GI discomfort and an MRI showed she also had PLD, which we never knew about. She had no prominent cysts. She has since passed away but not from anything related to her liver. It was just her time. I hope this helps. I hope anyone would get another opinion from a specialist in a completely different practice, before undergoing a liver resection. Good luck & best wishes.

@pachab00 thanks gor your reply. I have had a second opinion with two highly respected surgeons at highly respected medical centers. The recommendation is not that its urgent nut that its the only option. It is a benign condition but my case is unusual as the cysts are all in one lobe. Evidently not how this generally presents.
Im not jumping to do tge resection unless it impacts my quality of life or the severe attacks from bleeds become more frequent.
Glad to hear your cysts are stable.

@jmasti Glad you're thorough! Interesting that yours are just in one lobe.
I get it - my formerly large cyst bled, too. That was such a strange feeling. I'd picked up a fairly large rock in my garden to move it maybe three feet (I won't do that again!). Shortly after, I had pain and that ominous sense that I'd better get to an emergency room. I went, they fixed it, and, fortunately, I haven't had a recurrence. Best wishes.

I’ve been experiencing premenopausal symptoms since last year, but my family doctor is hesitant to prescribe anything because of the PLD. Is there really no path forward? I’m planning to reach out to the specialist to see whether there are any safe options.

@iowachica Best of luck. I think reaching out to your liver doc is the way to go.

@colleenyoung please tag me also.
My story is crazy & quite a long lonely trip. Most of it I can’t share here, but I am so happy to finally find other pld-ers. Even 1. I appreciate you sharing so much… & want to reciprocate.
While I’m here; By chance, does Anyone else also have NET’s? (a Zebra PLD-er)?