polycystic liver disease

[Sep9]

I’ve just been diagnosed. I would like to hear of others experience living with this. To operate or not?

[AyrshireK]

Hi Sep9, welcome to our merry band.

Sorry I can't help with personal experience of Polycystic Liver Disease but can point you in the direction of the BLT page on cystic liver conditions including PLD which may be useful. Find it at:- britishlivertrust.org.uk/in...

Katie

[Sep9 in reply to AyrshireK]

thank you

[Janty701]

I was diagnosed with Polycystic liver disease about 13 years ago. I had an operation to defenestrate the cysts in 2012. This gave me relief for about 18 months but then the pain returned. I had a second operation but by this time there were too many cysts and I was referred to another hospital who then referred me to Addenbrookes with a view to transplant. I was in denial for a few years and couldn't see how I was ill enough for a transplant. Eventually I saw reason. I waited 23 months for my transplant and it went well. My liver weighed 3 1/4 stone when it came out but they estimated it to be more like 4 stone as they had to pop 3 big cysts that were pressing on my spine to deflate the liver enough to get it out.

However, to give you some balance, my Dad, aunty, 8 cousins and 2 second cousins also have pld and have no issues whatsoever with it. Noone else has had to have an operation or any treatment. We laugh and say that I've taken one for the team.

[Mairead59]

Hi Sep9

I’m so sorry that you’ve had this diagnosis. What sort of operation have you been offered?

I was diagnosed in my late 40’s and had a laparoscopic defenestration within weeks, a resection was ruled out almost immediately as I had no good liver (it was all pretty much covered in cysts). I have always maintained that my defenestration triggered my cysts to grow aggressively as I went into hospital a size 10 and came out wearing maternity clothes, which I wore all through my 50’s until I eventually had my transplant at 60.

What symptoms are you experiencing? Some people can have the pain and discomfort but avoid the huge swollen belly. At the time I was diagnosed no one knew much about PLD and to this day a lot of GPs don’t fully understand how debilitating it can be. I’m a member of a PLD support group on FB, at the time I joined it was mainly UK sufferers but now has members from all over the world, it has a huge wealth of helpful information no matter what stage you are at with the disease.

I’m happy to help if you want any more information.

Maggie x