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Polycystic Liver Disease (PLD): Let's support each other
Just Want to Talk | Last Active: 4 hours ago | Replies (29)Comment receiving replies
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.
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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.