My 37 yr old daughter has recently been diagnosed with cysts on her liver and a small amount of fluid in her abdomen. She is currently waiting on more bloodwork but the tests that she’s already had show her bilirubin is high. She has been to the ER twice now due to extreme pain and pressure. I’m wondering if anyone else has dealt with this before and how dangerous it is? We’re very concerned as her doctor is not sure what is going on and it may take some time to see a specialist. Any feedback is greatly appreciated.
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Nana3029
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Has she had any recent rapid weight loss? This is similar to what happened to my wife. She got COVID-19 and lost 100 lbs over 6 months from COVID. Her liver LFT was normal, but her billi's were up. Her liver had swollen dramatically, and she had developed fluid-filled cysts. 4 major ones in total, 1 had almost completely collapsed the Portal vein, and another the IVC.
For her, the cysts vanished over a few days. It was diagnosed as sudden onset of NASH from rapid weight loss.
The biopsy showed ballooning with pericellular fibrosis, no portal damage, and a maintained liver architecture. Over the two biopsys over 6 months, the first showed bridging fibrosis but no septa, the second showed no bridging fibrosis, and the fibrosis grade was reduced to 0-1.
It took almost a year for her liver to reduce back to normal size. And she was very, very sick for the first 2-3 months.
Thank you for your reply. My daughter has lost 10 pounds only since this started due to not being able to eat properly. She was under 130 pounds to start at 5’5” tall so didn’t need to lose any weight. She has recently had Covid. We are in Canada where getting into a specialist can take months. She is seeing her doctor today so hopefully he can fast track her in.
If you [are in the UK and] would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays)
Update: My daughter’s gp told her today that she has a lot of cysts which is not something he sees often. He said that most people present with just one or two. Also the fluid in her abdomen is concerning. He is sending her for a ct scan. He did say that he doesn’t think it’s cancer. But doesn’t know what it is. He thought it was Gilbert’s disease but because her bilirubin is so high he say’s not. He has put her on meds to stimulate her appetite as she is losing weight.
The British Liver Trust website has a wealth of information about the different types of liver cysts and conditions that can cause them. britishlivertrust.org.uk/in...
Next step for her doctors is to discover what type of cysts they are.
I have polycystic liver disease and was diagnosed around the same sort of age as your daughter. I would be happy to have a chat if you send me a private message.
Claire
I used to get awful stabbing pains in my back which was referred pain from the cysts - a trigger point injection stopped those.
I am on regular strong painkillers as have a nervy type of chronic pain from the cysts.
I have had 2 surgeries so far - the 1st was a keyhole one where they cut the top of 10 cysts off and drained the liquid. This have me a few years less pain. The 2nd was CT guided aspiration from a couple of the larger cysts and within a few weeks I was taking a lot less medication. This has lasted a few years, but the cysts have recently filled up again and I'll be having another aspiration soon.
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