Biliary Drain and/or 2nd liver transplant??
Has anyone out there had their bile ducts clog up again after (maybe YEARS after) a first liver transplant and then been forced by circumstances to get external biliary drains placed???
"Grrrrrrrrrrrrrrrrrrrr". That's what external biliary drains bring out in me: "Grrrrrrrrrrrrrrrrrrrrrr!!!!!"
I am now 61. I recieved a live-donor liver transplant (from my brother) in 2006 due to Primary Sclerosing Cholangitis. In 2020, I started getting infections and fevers because my bile ducts were getting clogged up, not due to recurrence of the disease, but simply due to scarring and wear and tear. Due to the nature of the first transplant (Roux-en-Y), I cannot have internal stents placed, so they placed a plastic tube through my ribs and liver and through a clogged duct. I also had that temporarily done in 2010 before a bile-duct reconstruction surgery. This time the drain stayed in for 8 months, including 4 procedures to place gradually larger tubes to make the passageway wider and wider.
Anyway - it sucked! They had to go between my two lowest ribs and it hurt pretty much the entire time. They removed the drain in July, 2023, but I have now started to get infections again. My options seem to be these: 1) Get ANOTHER tube placed if that is possible. 2) Somehow try to get a second transplant, even though my MELD score will not qualify me for that unless I get very sick.
Has anyone else encountered this dilemma? I would actually prefer to get a 2nd transplant (that's how much I hate the external drain!), but I'm not even sure the transplant protocols will allow me to NOT get tubed again if that can open up my ducts...which would, of course, make it LESS likely that I'll qualify for a second transplant!
Anyhow. I am more than grateful to the medical establishment for keeping me alive all this time and perhaps - if I am fortunate - for some years to come. But...geeze I wish their was an easier path (funny that the possibility of having another transplant feels like an easier path!!)