Polycystic Kidney Disease, also Liver - now jaundice...

[RuthWells]

Hi all,

I haven't posted in a while, but have been lurking a bit.  I'm a PKD patient, 40 years old, GFR of 40% at last check (April 07).  My kidneys and liver are very cystic and very enlarged, to the point of discomfort.  Last week I noticed that the lower rims of my eyes have a yellowish cast to them -- mild jaundice.  This is a new one for me, so I did a little internet searching, and found that cysts in the liver can cause ducts to get blocked, resulting in jaundice. 

My neph's office told me to go to my primary, but I think that would be a waste of time.  I have an email out to my dad's liver doc, but while I chew my nails and wait to hear back from him, does anyone have any experience with this kind of thing?  Am I looking at some kind of procedure to relieve pressure on the bile duct?

 

[Ken Shelmerdine]

Hi Ruth Sorry to hear of the liver problem. I have heard that polycysts can biuld up on other organs with PKD but as far as I know it hasn't happened to me yet. So I don't really know what advice to give except keep chasing that email you sent to the doc. the longer you wait, the more stressed you'll get.

[wcmjt]

Hi all,

I haven't posted in a while, but have been lurking a bit. I'm a PKD patient, 40 years old, GFR of 40% at last check (April 07). My kidneys and liver are very cystic and very enlarged, to the point of discomfort. Last week I noticed that the lower rims of my eyes have a yellowish cast to them -- mild jaundice. This is a new one for me, so I did a little internet searching, and found that cysts in the liver can cause ducts to get blocked, resulting in jaundice.

My neph's office told me to go to my primary, but I think that would be a waste of time. I have an email out to my dad's liver doc, but while I chew my nails and wait to hear back from him, does anyone have any experience with this kind of thing? Am I looking at some kind of procedure to relieve pressure on the bile duct?

 

Well I just screwed up the previous post by trying to "quote" and then reply, so I'll try again.
I am a 60 year old male and I have known I have Polycystic Kidney Disease since I was in my 20's.
It is very common for a PKD patient to have cysts on the liver.  Althought they can get big enough to cause pain (like the cysts on the kidneys), these liver cysts do not usually interfear with the liver function.  Having said that, I certainly am no Dr. and would encourage you to pursue the "jaundice".  I would assume blood tests would be used to determine if indeed there is a reduction in liver function and then you would go from there.
Bill



EDITED: Fixed quote error and deleted effected post - Sluff/ Admin

[RuthWells]

Hi guys,

Well, I heard back from my dad's doc and he basically said that it's not usual to get jaundice with PKD, and to get myself to a gastroenterologist or a hepatologist to get checked out.  I have an appointment for Tuesday morning with a gastro in a practice that also has a hepatologist, so I'm set for now.

I did some more reading on the 'net, and my guess is I'm in for a round of imaging and blood work, after which I'm going to be told that they need to try to reduce some of the liver cysts.  Oh joy! 

[RuthWells]

A quick update -- I had blood drawn on Tuesday morning (liver & kidney function, and hepatitis screening) and should have results tomorrow.  The waiting is so hard.

[okarol]

Ruth,
Hang in there, hopefully you'll get some answers and know what the next step is.