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

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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Good Morning Abby,
My children have been an amazing support to me during this journey. My oldest son has a an amount of cysts they can count. I think its 3-4. He was not given a diagnosis of PLD. PLD typically is diagnosed when they use the term "innumerable" meaning there are so many they just don't really count them. However, they identify and measure the largest of them and watch them for growth and changes. Have you been diagnosed with PLD?
Thank you for the discussion, it helps to talk things through with others.

Hi, Erika,
I was diagnosed with PLD. The CT report was "innumerable," as you suggest. An article published in NIH website can be accessed as follows: Kothadia JP, Kreitman, K, Shah JM. Polycystive Liver Disease {updated 2023 Feb. 6]. In: StstPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2023 Jan-.
Link: https://www.ncbi/nlm.nih.gov/books/NBK549882.
They state that "at this time, there are no unified radiologic diagnostic criteria."
I don't know if these links will go through.
I'd like to have genetic testing if possible. I'm searching.
Thanks for keeping up the discussion. I feel your support and not so alone with this.

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

Hola, Chica. I don't know the answer to your question but send support. I had 1 drained an noted in my earlier entry. It came back. I had it sclerosed. I have a repeat CT in a couple of weeks to see if others have grown. Kaap us informed.
There's always a risk of infection with a skin puncture. Make sure they wash and wear gloves. One tech was going to remove my drain (which had been in for 2 hours as part of the sclerosing process. I had to insist he wear gloves and put antibiotic cream on before the bandaid.

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 asked about genetic testing because I have 2 grown daughters. There is some research postukating that PLD might be modulated/affected by estrogens. Although neither daughter takes estrogen, they might consider it around menopause unless contraindicated. I haven't gotten an answer regarding genetic testing.
It is my understanding that sclerosing an over-large cyst is the only remedy. Other than that, monitoring is all that's done. If anyone finds out otherwise, please post, as will I.