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

Transplants | Last Active: Dec 27, 2023 | Replies (17)
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@seantraci9

I have been diagnosed about a year ago with polycystic liver disease. I have cysts on my kidneys, liver and pancreas. I cannot wear a bra because the liver is pushing against my ribs, uncomfortable most of the time. did your husband ever have his cyst drained. I live in thousand oaks calif which is in ventura county. I am looking for a doctor who deals with polycystic liver disease and kidney disease.I have read thing not to eat but that's about all. I cannot find anyone who knows about this disease. can you help I will take any information I can get. I am 76 years old, very active, for instance i am putting in a retaining wall in my back yard so I am active.
thank you in advance for the help. Jill

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Replies to "I have been diagnosed about a year ago with polycystic liver disease. I have cysts on..."
Rosemary, Volunteer Mentor | @rosemarya | Oct 4, 2021

@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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