Dear Rose May,
I am so sorry to hear of the trouble you are having.
There have been a few of us who have had exploratory surgery, only to find out that the tumor was not resectable. It’s a real let-down. I hope they can get your numbers down so you can have a successful resection. The external bag is a pain, isn’t it? I hope that it is real temporary and you can get better soon.
Hi Rose, I too am so sorry for all the problems. When my Dad had the bag attached to his biliary cath for awhile, it filled very irregularly (sometimes going a while day without coming out – and then pouring out the next day). His fluid too was dark yellow, and they indicated it was fine. They even cultured it at times.
I had an external stent placed on Tuesday March 10 after the first attempt at an internal stent failed two weeks earlier. My liver was completely obstructed for several weeks before the external stent procedure. They said it was backed up and under so much pressure that they had quite a time controlling the drainage while they were placing it,
They scheduled a liver resection for March 19 believing that the bilirubon levels would be down to an acceptable 5-7 total bili by then.
Well, today is March 16 and I had a blood draw down and the numbers are beginning to go up instead of down and my total bili is at 13. It looks like we’ll be postponing the surgery yet again.
Meanwhile I am quite concerned. Why are the numbers going up instead of down? Does that mean the stent is not working? I am getting between 350-400ccs of fluid in my bag each day.
The fluid is a dark yellow rather than dark green, if that means anything to anyone.
I am worried that I suffered too much liver damage from the prolonged congestion and that my liver is simply not recovering enough to properly process the bilirubin. I worry that if my liver is damaged that much than surgery is no longer an option.
I also worry that this tumor will continue to grow and possibly begin to inhabit lymph nodes, etc while I am waiting so long for the surgery and at some point it will be declared unresectable.
Does anyone have experience with stent failures and operable livers being declared inoperable?