Guest guest Posted July 11, 2007 Report Share Posted July 11, 2007 Unfortunately, I think the nature of PSC for most is to loose weight. I'm 5'10", currently 130 lbs. and have gone as low as 111 lbs. during really bad periods...up and down, up and down. My last ERCP was done by one of the best in my area (Miami). He said no opportunity to scope any longer...the ducts are just too beaded and closed off....that was 2 years ago now. Some months since then have been hard with periodic infection and one hospitalization, but now lately things are mostly good...who knew? I think it's anyone's guess as to how long someone can function this way? That's probably not the answer you're looking for, but PSC is very frustrating that way. It's so different for each person and there aren't a lot of clear cut answers to go by. After watching my father die of cancer in 6 months, I worry about cholagiocarcinoma more than anything. I'd just as soon keep the messed up liver I've got at this point...as long as I'm still able to work (with naps, of course!) and still do some of the things I enjoy. I so dread the thought of going through the whole transplant ordeal. Jeff PSC 1989 >> havent been on lately, my father is starting to lose weight and he does not know why, he just had an ERCP done on monday and his number is not good my mother said. She also said that his ducts are almost totally closed now. IS THERE ANYONE OUT THERE THAT KNOWS IF YOU CAN FUNCTION IF THE DUCTS ARE CLOSED?? will he now start to have physical signs of the illness?? he has nothing yet. You would never know he is sick if you werent told. He is awaiting to hear from the doctor. he is starting to worry me know. I was praying for him to not need the transplant but now I am praying for a liver. > > father Clyde UC 1999 PSC 2003> a Marquardt> www.geocities.com/scrapbookingretreattrio> one of three Get a sneak peak of the all-new AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2007 Report Share Posted July 11, 2007 Hi a, Sorry it took so long to respond to your question. There are a number of alternatives out there that I haven't seen mention of lately, so here goes: 1. Dilation and stenting by ERCP. If the duct can't be dilated, however, the stent can't be inserted. The stent is a semi-rigid tube of expandable plastic (sometimes metal, plastic is preferable). The more closed the duct is, the harder it is to expand. I had a duct that was almost closed and it wasn't until my VERY experienced ERCP specialist used an experimental " spy scope " that he was able to see the stricture and dilate it. He did not stent. I was in a similar situation to your dad: ducts were not passing the dye they inject by ERCP, but I still felt fine. This situation lasted over a year before the third try opened the ducts. Where is he getting ERCP? This scope is in development at Mayo, Rochester, MN and Beth Israel, Boston. 2. PTC- percutaneous transhepatic cholangiography - or something like that! Anyway, I had one shortly after the first ERCP failed. This was an attempt to get into the bile ducts using a needle between the ribs and into the liver bile ducts ABOVE the stricture. It was a miserable failure. My bile ducts were too scarred to get in and the needle just could not penetrate. Had it succeeded, they would first have tried to dilate and stent from above. Had that failed, they would have inserted an external drain, so the bile could be caught in a bag attached to my abdomen. The bag needs to be changed and kept sterile. I beleive Tim R (recovering from transplant now) and a number of others have had this, for periods of months or more. It can extend the functioning life of the liver, because blocked ducts cause degeneration of the liver, but it also lowers your MELD score because the Bilirubin doesn't go up. So if he's a candidate for transplant, there is some give and take you should have with the doctor about whether to do this procedure. 3. Had the PTC and external drains succeeded, it is possible to have a biliary bypass operation. If there is a major block in a large bile duct EXTERNAL to the liver, they can cut above the block and attatch it directly to a section of bowel- basically the same surgery as transplant, except with the native liver, and leaving the blood supply as is. This also will extend the life of the native liver, but very few people have the right conjunction of circumstances to make it workable. The surgeon who evaluated me had only done it 4 times in 10 years. It makes sense for people who have early stage disease- not cirrhosis. Hope this helps. During that year that the ducts were " nearly " blocked, I also lost some weight, but it stabilized and then went back up when the ducts were opened. I added fish oil on top of high dose urso, and this seemed to correlate with a reduction in LFT readings over that year. It took a few months, but there was a definite improvement. > > havent been on lately, my father is starting to lose weight and he does not know why, he just had an ERCP done on monday and his number is not good my mother said. She also said that his ducts are almost totally closed now. IS THERE ANYONE OUT THERE THAT KNOWS IF YOU CAN FUNCTION IF THE DUCTS ARE CLOSED?? will he now start to have physical signs of the illness?? he has nothing yet. You would never know he is sick if you werent told. He is awaiting to hear from the doctor. he is starting to worry me know. I was praying for him to not need the transplant but now I am praying for a liver. > > father Clyde UC 1999 PSC 2003 > a Marquardt > www.geocities.com/scrapbookingretreattrio > one of three > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2007 Report Share Posted July 12, 2007 I dont know how to spell this but my mother told me about the "billy rueben" number she says my fathers is now a 5, can someone tell me what that number means a Marquardtwww.geocities.com/scrapbookingretreattrioone of three Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2007 Report Share Posted July 12, 2007 Bilirubin is a yellow-green colored product of the breakdown of old red blood cells by the liver. The liver gets rid of it through bile ducts that drain into the gut. When ducts are blocked it diffuses into the blood, so the bilirubin levels go up. As it rises he may begin to appear jaundiced (yellow) in the whites of his eyes and then his skin. Normally total bilirubin is around 1.0-1.5, so he has a lot of it. People here have had levels of 12 or higher before transplant. Bilirubin is one of three biomarkers that go into determining MELD score. MELD stands for " model of end-stage liver disease " . The idea of it is that if you have a higher MELD, you are in greater need of a transplant because your risk of death is higher. MELD doesn't always predict the danger accurately. The other two markers are for clotting time (INR) because the liver makes factors necessary for blood clotting, and creatinine, a measure of kidney function. Advanced liver disease can cause kidney failure. Many PSCers consider living donor transplants, because in populous areas cadaveric donor transplants are often so much in demand that the MELD score has to be in the 30s to reach the top of the list. PSCers have other complications such as infections, not measured by MELD, that increase their risk. Do pass on the list of treatments for blocked ducts to your parents, so they can discuss options with the doctors. Martha (MA) UC 1979, PSC 1992 > > I dont know how to spell this but my mother told me about the " billy rueben " number she says my fathers is now a 5, can someone tell me what that number means > > a Marquardt > www.geocities.com/scrapbookingretreattrio > one of three > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2007 Report Share Posted July 12, 2007 a, Bilirubin is an output from the liver. When the ducts close the bilirubin can no longer take it normal path and seeps into the blood stream. The normal level of bilirubin is 1.2. So you father's high. This valus is also used in calculating the MELD score. You can get more information from this website: http://www.psc-literature.org/FAQ.htm PSC 89, TX1 97, TX2 04 > > I dont know how to spell this but my mother told me about the " billy rueben " number she says my fathers is now a 5, can someone tell me what that number means > > a Marquardt > www.geocities.com/scrapbookingretreattrio > one of three > Quote Link to comment Share on other sites More sharing options...
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