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

Welcome @pachab00. I added your discussion to the Digestive Health and Transplants support groups as well. Great idea to round up all the members living with polycystic liver disease in one place to offer support and exchange experiences and information. I'm tagging fellow PLD-ers like @seantraci9 @amywood20 @coastalgirl @pkindron to share their PLD story.

Pachab00, can you kick off the sharing? What's your PLD story? How were you diagnosed? Where are you in your journey now? Treatment options? How are you doing?

Thanks.
I felt a small substernal bulge 5 years ago. An internist thought it was a lipoma. My GI ordered a CT scan that showed a "small" 4cm liver cyst, no f/u recommended. In Dec '22, at my annual check up. I mentioned I felt full after even a small meal. Fortunately, same internist looked back & suggested a f/u CT, which I had in January. It showed the cyst had grown to 9.5cm.he referred me to a GI Doc. I saw his NP the next day (:-)) . She'd checked the report w him & told her to tell me to see a GI surgeon (he never examined me, nor did she). Saw GI surgeon in about 2 was who discussed options and said he'd review it w an intervention radiologist colleague, who drained the primary cyst about 2 was later under local. 450 cc straw colored fluid, cytology report was negative. He told me it was likely to return and described the sclerosing procedure available should that occur. The recent CT also showed some portal hypertension and a gi doc who is a friend suggested I have a portal being study done. When it was done about 2 was after the draining procedure, we could see the cyst was back to its 9cm size, which I expected since I was again symptomatic.
The CT also showed some fluid l.l. and possibly related to a bladder situation, totally unknown to me. I have a urology consult end of this month. Pelvic ultrasound was negative (thank heavens, no ovarian cancer).
So I'll have the sclerosing procedure this week. To get this scheduled took MANY phone calls back to the doc's office, a delay in sending the referral, more calls from me to the on-call doc finally (what would indicate need for going to the ED?) and calls to their practice manager, the hospital scheduler, etc, etc. Self-advocacy: I have become invmcreasingly uncomfortable this past fee weeks. I feel like I'm 9 months pregnant from the pressure. I'm 70 and otherwise in very good health. All labs normal, etc. Stay tuned. What have other's experiences been with this? I want to get the genetic test....

Hello @pachab00. My PLD story is pretty dull. It wS diagnosed along with PKD which resulted in a kidney transplant. So far my liver function is still great and no significant issues as a result of the PLD. Best wishes. We are here for you💛

Thanks, Coastalgirl. I hope you're doing well w your new kidney. I've heard a bit about lifelong anti-rejection drugs & metabolic changes. Maybe that's changed.

@pachab00, I am popping in to extend my welcome to Connect. I have no experience with PLD, but I am a liver and kidney transplant recipient. I have located a group that I want to share with you. If you use their @name, they will see that you reaching out to them.

- My husband has PLD (polycystic liver disease) with an extremely enlarged liver
https://connect.mayoclinic.org/discussion/my-husband-has-pld-polycystic-liver-disease-with-an-extremely-enlarged-liver/
Pachab00 - I hope that your procedure goes smoothly for you this week.

Thankyou.

Had largest of the liver cysts drained & sclerosed this morning. I don't feel 8 months pregnant anymore. There was evidence of Mire than 1 bleed into it, so I'm glad to not have to worry about that happening again, at least to this one. The rest are very small. Only 1 is 4cm, too small to treat & asymptomatic.

Oops...more (not mire).

@pachab00, I am so happy for you! I think that you will be able sleep well tonight 🤍

What kind of a recovery is in store for you? And what kind of treatment, if any, for the small cyst?

Thanks, Rosemary,
With polycystic liver "disease," (PLD) there are innumerable cysts. Fortunately, this is a benign condition. Nothing will be done about the other cysts uncomfortable. one enlarges enough to be uncomfortable.
It seems I also have some portal hypertension. I'm hoping it's from the distended cyst and will subside, but the GI docs think it's unrelated. They also say they don't treat it. All my labs & imaging (CT & portal vein study) are negative. Can you find out anything else from any of the GI docs there? Can the Mayo librarian hunt for any research on this and PLD?