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

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.

Your best bet for a referral is to ask your GI doc. Also, a nearby University Hospital is always a good resource. I will ask my team if they have a suggestion when I see them at the end of the month.
I have 3 sons. Two of my sons were diagnosed from ultra sounds and an MRI while going through the evaluation process to be my live donor. I knew that the chances were one of them would have PLD, I was shocked when two of them were diagnosed. My oldest son has a few cysts but not PLD. They are all healthy young men. Their doctors will monitor but have no concerns at this time.
I was diagnosed by ultrasound when my Primary doc ordered it for complaints of discomfort and pain in my abdomen. We had no idea that there was a family history of PLD. When I was diagnosed and began asking questions, we discovered that it was mentioned in a report from an MRI my dad had but it wasn't a problem so he had never shared.

Again, thankyou.What is the distinction between "having a few cysts" and the diagnosis of PLD? The number of cysts?How fortunate one son was clear for your transplant. How fortunate you are to have three. 

Abbey

On Wed, Mar 22, 2023 at 12:42 PM, Mayo Clinic Connect wrote:
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After several other tests which also included an MRI and CT. The diagnosis is officially PLD with a few small cysts on both kidney is what I was told. The doc who works with liver disease patients said aside from what the MIR and CT confirms... all of my labs (3) look great. I look like I'm 3-4 months prego and was told the only way to solve this is to go to a medical center in Omaha, Ne and work with the team of doctors to drain the larger of the cysts, which had not popped (over a span of 12 days the 2, I had popped).
The conversation from the doc is in my head but really...it's kind of muddled. Like my brain is still saying "it's not real". Please let me know what draining your cysts feel like and is there a pro or con to draining them or infection? How long is it between draining and or how fast would more come? So lost and just too much to process. Thank you in advance

@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.

Thank you @rosemarya a day or so, I posted an update about my condition and @pachab00 answered. From what I have read, and correct me please, PLD is only managed by getting rid of the cysts (draining or sclerosed) but is this day surgery or does it involve more? When it comes to a 'time' frame of reoccurrences of having this procedure done (1,2,5 or 10 years) looks like it depends on the person.
As this progresses will I need to be monitored by CT's and ultra sounds or more like annual MRI's.
In the older posts, I see genetic testing was an idea to have. Can someone tell me the reason why?

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.