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.