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

Posted by pachab00 @pachab00, Mar 5, 2023

Large cysts to be drained (2nd time in a month) and sclerosed this week (1st time). Trying to start a discussion group.

Interested in more discussions like this? Go to the Liver Diseases Support Group.

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pachab00 | @pachab00 | May 5 9:17am
In reply to @bluemoon522 "@colleenyoung please tag me also. My story is crazy & quite a long lonely trip. Most..." + (show)
Profile picture for bluemoon522 @bluemoon522

@colleenyoung please tag me also.
My story is crazy & quite a long lonely trip. Most of it I can’t share here, but I am so happy to finally find other pld-ers. Even 1. I appreciate you sharing so much… & want to reciprocate.
While I’m here; By chance, does Anyone else also have NET’s? (a Zebra PLD-er)?

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Never heard of it (fortunately, I think). Best wishes.

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Moderator
Lisa Lucier, Moderator | @lisalucier | May 5 9:23am
In reply to @bluemoon522 "@colleenyoung please tag me also. My story is crazy & quite a long lonely trip. Most..." + (show)
Profile picture for bluemoon522 @bluemoon522

@colleenyoung please tag me also.
My story is crazy & quite a long lonely trip. Most of it I can’t share here, but I am so happy to finally find other pld-ers. Even 1. I appreciate you sharing so much… & want to reciprocate.
While I’m here; By chance, does Anyone else also have NET’s? (a Zebra PLD-er)?

Jump to this post

@bluemoon522 - I'll let others in this discussion chime in about whether they may have NETs as well, but I also wanted to be sure you were aware of the active Mayo Clinic Connect NETs support group.

- Neuroendocrine Tumors (NETs) Support Group https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/

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dbamos1945 | @dbamos1945 | May 5 12:13pm
In reply to @bluemoon522 "@colleenyoung please tag me also. My story is crazy & quite a long lonely trip. Most..." + (show)
Profile picture for bluemoon522 @bluemoon522

@colleenyoung please tag me also.
My story is crazy & quite a long lonely trip. Most of it I can’t share here, but I am so happy to finally find other pld-ers. Even 1. I appreciate you sharing so much… & want to reciprocate.
While I’m here; By chance, does Anyone else also have NET’s? (a Zebra PLD-er)?

Jump to this post

@bluemoon522: NETS is Neuroendocrine Cancer. You can read diverse posts regarding NET symptoms, treatments, etc. on Mayo Connect Neuroendocrine Group. Also There are several online NET resources available through Lacnets, NETRF, you will find online. Educate yourself on this new medical diagnosis - this will give you the ability to adjust to your Net cancer.

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jmasti | @jmasti | May 5 2:31pm
In reply to @iowachica "Hello, my case is not similar to your current news.... In my case, the cysts were..." + (show)
Profile picture for iowachica @iowachica

Hello, my case is not similar to your current news.... In my case, the cysts were distributed throughout my liver and ranged in various sizes, with several measuring up to 30 cm. During surgery, they were treated using thermal ablation (burning), and my doctor removed more than 27 cysts and drained approximately 3 liters of fluid. About a year later, a few cysts returned, and I'm being monitored. I was unaware I had them until I ended up in the emergency room.

The doctor who treated me mentioned a 10-15 year return to surgery. Does this line up with your story?

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@iowachica
Hi
Somehow i never saw this sooner. I had liver de roofing in 1999 and then again in 2014 so about 15 years apart. I recently have had some cyst bleeds and after MRI my liver specialist referred to the surgical team. My right lobe is basically all cysts. They do not recommend anything other than liver resection to remove tge right lobe. I had the same recommendation from a second top surgeon both from highly respectable hospitals. I’ve decided unless tge bleeds are more often or my daily quality of life is affected im going to just continually monitor with my care team.
Best wishes to you.

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