Defenestration or detouring of cysts in PLD

[PostivelyJo]

Recently went to King’s London for possible liver transplant tests due to a large polycystic liver and they feel it is the wrong time. That enough good parts of my liver remain. However it is very large and they are considering draining the cysts.

Anyone out there had similar experience ?

Jo

[Babygoaf]

I have 2 large benign cysts one is 19 cm the consultant is reluctant to defenestrate the cyst saying that it can cause more problems than it fixes. He ruled out draining the cyst as it would only fill up again. I have not yet been diagnosed with polycystic disease but also have kidney cysts and had ovarian cysts that were removed years ago so it’s possibility. I’m going back to GP to get another referral.

[Sing2011]

Hi Jo, I am new to this group and can see your post was 6 months ago. I have PLD and my liver is now 3 times larger than it should be. I have been told that I cannot have de-roofing as the cysts will just re-enter the space as so many, a liver resection isn’t possible as my liver is covered so there is no clean space to operate. I have been advised that they don’t want to do any surgeries right now as would make transplant a problem further down the road. I am very reluctant to do this as my liver is healthy other than covered with cysts, some are 15cm big. Good luck!

[PostivelyJo in reply to Sing2011]

thank you for your reply. I have been told too thst a transplant is not an option at the moment. I’m possibly up for a left side native nephrectomy … as I have pkd too do you have thoughts about that

[Sing2011]

I don’t have any knowledge of PKD unfortunately. There is a FB group called PLD Polycystic Liver Disease Support Group that I would recommend as it has lots of support for PKD. I hope it helps

[PostivelyJo]

I have both pkd and PLD .