← Return to My husband has PLD (polycystic liver disease) with an extremely enlarged liver

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@rosemarya

@seantraci9, In addition to being very active, you must also be an early riser. I am in the eastern time zone and just finishing my cup of coffee!
My husband was not the one with PLD, I was responding to another member.
As you are aware, PLD is a rare disease, and information is hard to find,
Mayo Clinic has excellent information bout Polycystic Lived Disease at -
https://www.mayoclinic.org/diseases-conditions/polycystic-kidney-disease/symptoms-causes/syc-20352820

I also want to share this link from NORD National Organizatioin for Rare Diseases Rare Diseases about PLD. A possible starting point for your doctor search is a phone call to one of these contacts.
https://rarediseases.org/rare-diseases/polycystic-liver-disease/
Supporting Organizations

American Liver Foundation
39 Broadway, Suite 2700
New York, NY 10006 USA
Toll-free: (800) 465-4837
Email: http://www.liverfoundation.org/contact/
Website: http://www.liverfoundation.org

Genetic and Rare Diseases (GARD) Information Center
PO Box 8126
Gaithersburg, MD 20898-8126
Phone: (301) 251-4925
Toll-free: (888) 205-2311
Website: http://rarediseases.info.nih.gov/GARD/

NIH/National Institute of Diabetes, Digestive & Kidney Diseases
Office of Communications & Public Liaison
Bldg 31, Rm 9A06
Bethesda, MD 20892-2560
Phone: (301) 496-3583
Email: NDDIC@info.niddk.nih.gov
Website: http://www2.niddk.nih.gov/

@seantraci9, Who diagnosed your PLD? What has that doctor advised? Have you asked for a referral to a liver specialist?

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Replies to "@seantraci9, In addition to being very active, you must also be an early riser. I am..."

@seantraci9, I have just now tagged you to the discussion - Transplants>Liver Cysts with PKD.
https://connect.mayoclinic.org/discussion/liver-cysts-with-pkd/
You will be getting a notification that will take you directly to this discussion.

a radiologist confirmed then a doctor the head of the liver dept at ucla confirmed. Yes I have gotten referrals but none of them deal or know about PLD.
I have over 100 cysts on the liver and some n the kidneys and pancreas. One of the cysts will be do to be aspirated it is large and I am in pain all the time.