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

Posted by Linda M. @lmarcellus, Jul 19, 2014

My husband has PLD (polycystic liver disease) with an extremely enlarged liver that Mayo said he needed a transplant from a living donor. He had a successful kidney transplant 4 years ago and was in great health 5 weeks ago rapelling down into water and zip-lining on our vacation. He got infections and now his liver is much larger than it was 5 weeks ago. He went from wearing size 34 waist pants to looking like he is 6 months pregnant and in severe pain and not having room to eat. How can the liver enlarge so fast?

Hi, @lmarcellus. I’m sorry to hear about your husband. Here’s some information on an enlarged liver that may be helpful for you: http://www.mayoclinic.org/diseases-conditions/enlarged-liver/basics/definition/con-20024769.

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@Margaret_Marie

Hi, @lmarcellus. I’m sorry to hear about your husband. Here’s some information on an enlarged liver that may be helpful for you: http://www.mayoclinic.org/diseases-conditions/enlarged-liver/basics/definition/con-20024769.

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Thank you for the information. Mayo has since diagnosed him with
disseminated histoplasmosis causing the enlargement and he is here getting IV medication. It is pretty serious having this fungal infection in addition to suppressed immunity, PLD, and transplanted kidney.

Thanks again.

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@lmarcellus

Thank you for the information. Mayo has since diagnosed him with
disseminated histoplasmosis causing the enlargement and he is here getting IV medication. It is pretty serious having this fungal infection in addition to suppressed immunity, PLD, and transplanted kidney.

Thanks again.

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I am sorry to hear about your husband.trying to find a doctor in calif that treats polycystic liver disease a rare disease. the liver has many cysts and it enlarges. cannot find a doctor. thank you

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@seantraci9

I am sorry to hear about your husband.trying to find a doctor in calif that treats polycystic liver disease a rare disease. the liver has many cysts and it enlarges. cannot find a doctor. thank you

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@seantraci9, Please accept my welcome to Mayo Clinic Connect. We are an online community of patients who come here for a variety of reasons to meet others with health situations similar to ours. We ask questions and we share from our own experience to support and encourage others.
I am a transplant recipient and a volunteer mentor. I would like to help you to meet others who may be able to provide some helpful information.

A re you looking for information for yourself about polycystic liver disease? Have you recently been diagnosed? Are you currently looking for a doctor? What are you comfortable to share with me that will tell me a little more about your reason for coming to Connect?

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@lmarcellus

Thank you for the information. Mayo has since diagnosed him with
disseminated histoplasmosis causing the enlargement and he is here getting IV medication. It is pretty serious having this fungal infection in addition to suppressed immunity, PLD, and transplanted kidney.

Thanks again.

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@lmarcellus How is your husband doing now?

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@rosemarya

@seantraci9, Please accept my welcome to Mayo Clinic Connect. We are an online community of patients who come here for a variety of reasons to meet others with health situations similar to ours. We ask questions and we share from our own experience to support and encourage others.
I am a transplant recipient and a volunteer mentor. I would like to help you to meet others who may be able to provide some helpful information.

A re you looking for information for yourself about polycystic liver disease? Have you recently been diagnosed? Are you currently looking for a doctor? What are you comfortable to share with me that will tell me a little more about your reason for coming to Connect?

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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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@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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@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?

REPLY
@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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@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.

REPLY
@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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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.

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@seantraci9

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.

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@seantraci9, might it be an option for you to travel to Mayo Clinic in Phoenix to see a specialist in PLD?

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