Complex polycystic liver disease - British Liver Trust

British Liver Trust

36,239 members17,898 posts

Complex polycystic liver disease

Ian57 profile image
10 Replies

I everyone i have been diagnosed with the above disease, took ill in September ended up with sepsis as a result of systs in my stomagh having burst, as a result they bleed and infected my liver, as a result i was in hospital for 4 weeks im now at home still very weak unfortunately i only have a small part of my liver workingat this moment, so having to take things rather easy.

Written by
Ian57 profile image
Ian57
To view profiles and participate in discussions please or .
Read more about...
10 Replies

Good afternoon Ian57,

Welcome to this friendly forum.

Sorry to hear you are not feeling so well.

I have included a link to the British Liver Trust publication on cystic disease .

britishlivertrust.org.uk/in...

Wishing you a speedy recovery,

Trust9

Hi

I see that your cysts were not liver cysts but stomach cysts that burst and caused sepsis. Your medical team will need to know that the stomach has healed and probably monitor you for recurrent cysts. They will also need to find out what caused the cysts. A liver scan and blood tests should be able to determine whether any damage to your liver is permanent or temporary once the sepsis has been dealt with.

Ian57 profile image
Ian57 in reply to

Hi there yea there are multiple cysts which the doctors dont want to touch for fear of causing further damage part of my liver is damaged i have been told to get the rest of my family tested so far 2 have come back with cysts although not as many as mine.

Ian57 profile image
Ian57 in reply to

On reading my discharge letter its liver cysts

I have the same condition and in April something similar happened to me but the cysts were in my liver and I developed peritonitis because they believe some of the liver cysts had burst and caused a build up of fluid in my stomach. I was very unwell and nearly on the way to developing sepsis. I was told it can likely happen again as I have quite a few complex cysts.

Ian57 profile image
Ian57 in reply to

Hi mate

Sounds just the same as me except i got sepsis

Yes, I think if you look on your discharge report you might discover that the cysts were in your liver and past infected blood to your stomach which is what happened to me. This is extremely rare. They took 4 weeks to come up with the cause as they had never know it happen. I have an enlarged liver with a couple of cysts 10+cm which are complex and they want to drain and do something with so they can’t fill again. I have had cysts on a kidney which basically stopped working and has withered. My liver still is ok but the tube leading to the bile duct can block due to a cyst which can cause really bad stomach pain. Are you having scans to keep an eye on the liver cysts

Ian57 profile image
Ian57 in reply to

Was just looking at my discharge letter yes is in the liver yea having regular checks i have around 40 of them they are reluctant to try and do anything with them for fear of further damage

What checks do you have, do you have to go to hospital?

Ian57 profile image
Ian57

I get my bloods checked every Friday morning, have to see my consultant once a month, have to monitor my temperature im pretty fortunate in that my wife is a A&E sister, thankfully im off antibiotics,

You may also like...

Polycystic Liver Disease

I have lots of cysts on quite a few of my organs. My kidneys, Liver and Spleen mainly. I have...

Polycystic liver disease

to see GP on Monday regarding referral pain im having in my shoulder, and pain in my abdomen GP says

Information about polycystic ovaries and liver disease

baffle me why UK doesn't do more studies on this, took me years to convince my own mother that...

Covid and Liver Disease

how does Covid affect the liver, I know it is the livers job to fight infection and is that still...

NON CIRRHOTIC LIVER DISEASE

about non cirrhotic liver disease, unlike the more common NAFLD and alcohol related liver issues,...