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

Just Want to Talk | Last Active: Apr 14, 2023 | Replies (28)
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@pachab00

Thanks, Rosemary,
With polycystic liver "disease," (PLD) there are innumerable cysts. Fortunately, this is a benign condition. Nothing will be done about the other cysts uncomfortable. one enlarges enough to be uncomfortable.
It seems I also have some portal hypertension. I'm hoping it's from the distended cyst and will subside, but the GI docs think it's unrelated. They also say they don't treat it. All my labs & imaging (CT & portal vein study) are negative. Can you find out anything else from any of the GI docs there? Can the Mayo librarian hunt for any research on this and PLD?

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Replies to "Thanks, Rosemary, With polycystic liver "disease," (PLD) there are innumerable cysts. Fortunately, this is a benign..."
Rosemary, Volunteer Mentor | @rosemarya | Mar 10, 2023

@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?

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