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

@pachab00, Like yourself, I am a patient. I joined Connect after my liver and kidney transplant because I was looking for someone else with the same rare disease, like I had. I wanted learn what kind of life could be in my future because I had never met anyone who had my rare, progressive disease. I was sent to Mayo by my transplant team, from my home in Kentucky, when my condition became critical.

Mayo Clinic has excellent information:
- Polycystic Liver Disease
https://www.mayoclinic.org/diseases-conditions/polycystic-kidney-disease/symptoms-causes/syc-20352820
- Enlarged Liver
http://www.mayoclinic.org/diseases-conditions/enlarged-liver/basics/definition/con-20024769.
and
NIH has excellent information
- Polycystic Liver Disease - NIH
https://rarediseases.info.nih.gov/diseases/9457/polycystic-liver-disease
Pachab00,
I have located a discussion that is a few years old, however, you can bring it to life again by making a comment or question there.
- 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/
PLD is a rare disease, and not all doctors see it or treat it. Have you considered a second opinion at Mayo?

Thanks for the leads. I'll review them soon. Fortunately, my liver is normal size and all liver functions are normal. The only thing is I do have some portal hypertension. The docs here say they do not treat it. I'll check further and follow up if indicated. There is no other liver disease evident. I hope it stays that way. Best of luck with your transplants,

Hello, new to group and PLD. I'm 46 and just got diagnosed this week. A trip to the hospital with extended belly (looking prego) along with other things.

How are you doing now? I had a 9 cm liver cyst drained X 1. It came right back. Then I had it drained & sclerosed with a detergent-like foamy stuff. Doc ordered a follow up ultrasound in 6 was to make sure it's gone. You?

@iowachica, I want to welcome you to Connect. This is a good place to ask questions and get support while sharing your own experiences to help others. I see that you have already met @pachab00. I would like to extend an invitation to @erikaclark, who also has experience with PLD that might be helpful.

Greetings, Erika

I was diagnosed with PLD in 2017 at the age of 46. My GI doc asked if I wanted a referral to Stanford where they would have more experience with PLD. I am very thankful I did. It's very important to have doctors who are familiar with PLD, otherwise they may want to do procedures that do not really help. I was monitored every 6 months for growth from 2017 until 2022. During this time, my cysts grew to the point where I was severely distended (looked like I was having twins) exhausted, in pain and discomfort, had trouble eating and had issues doing daily task. When I went to my doc in August of 2021 to ask about options since my symptoms were worsening, I was shocked when he advised I would need a transplant. My liver numbers were not great but also not bad enough to warrant a MELD score that would result in a deceased liver transplant. I was placed on the transplant list but a live donor was my best option. Thankfully, my brother was a perfect candidate and I was transplanted in November 2023. Unfortunately while going through the evaluation process, two of my three adult sons found out the have PLD. During my journey I have found that there is not a lot known about PLD. I spent hours researching. Our disease is not typically life threatening so doctors don't always take it seriously. People that have it may not ever know because they may never become symptomatic. We will continue to monitor and now know what to be looking for. My advice is to find a good hepatologist, keep being monitored, advocate for yourself and be honest about your symptoms.

Thanks so much, Erika. I will look for a hepatologist. Best of luck w your transplant. I'm so glad your brother could donate enough so you both could be well.
How did your sons get diagnosed?
I'd like to ask your hepatologist for a referral nearer my home (Virginia Beach, VA). I don't mind traveling. Perhaps you'd send his name/contact info.
Fortunately, so far all my labs are normal although I do have some portal hypertension. Noone here is worried about it. A venous scan showed it to be localized and I'm wondering if it might get better now that the big (9cm) cyst has been sclerotized. Here, they say it's unrelated, but I can't imagine why not. I have no other liver disease & no known family history. Glad for your participation, help, info.

Any suggestions on what foods I can eat that will not make me feel more expanded and more uncomfortable. Or what foods to stay away from?

Thank you in advance

With most diets it always depends on your own body and what works for you. Personally, I avoided soy products, too many carbs and made sure I was eating enough protein. It sounds like you are having issues with getting full easily. I ate about 6 small meals a day, always including a protein in those meals.

I searched PLD support during my journey and found a website that publishes stories about those living with PLD and also has a tab at the top with diet suggestions specific to PLD. I can't post the URL but if you search polycystic liver disease it should show up.