Guest guest Posted March 22, 1999 Report Share Posted March 22, 1999 Right, this is one of the ways that the deck seems stacked against PSC patients when it comes to transplants, although there may be valid medical reasons for this rule. The other rule, which I think is very significant, is that patients with PSC can only be listed at status 3 or status 2B or 2A. Status 2A is almost as high as status 1, but PSC patients and those with similar types of liver disease can not be listed as status 1, even if they have less than 7 days to live. This does not seem right to me, but then again there may be good reasons for it. Thanks, Roy T. bili levels for tx > - > >The nature of cholestatic liver diseases like PSC and PBC is that they >cause very high bilirubin counts without causing some of the other types of >problems that non-cholestatic disease causes. So PSC/PBC patients tend to >be healthier at higher bili counts than non-PSC patients and hepatitis or >cancer patients will not ever see the bili levels that PSC patients have. > >The points awarded to tx candidates for bili levels are: > >Points 1 2 3 > >Non-PSC <2 2-3 >3 > >PSC <4 4-10 >10 > > >As you can see there is quite a difference, especially at the 3 point >level. In the absence of other significant health problems, my >hepatologist says he typically lists patients between 3-4 with the goal of >transplanting around 7-8. > >Also, for those interested in the blood matching issue, the UNOS policy >discusses how points are awarded for blood type incompatability and >indicates the conditions under which livers may be transplanted when the >blood types don't match between donor and recipient as well as which >mis-matches are forbidden. > > >Russ > > > > >------------------------------------------------------------------------ >eGroups Spotlight: > " Loads " - A " truckstop " support group for trucker families. >http://offers./click/243/3 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 1999 Report Share Posted March 23, 1999 Roy, Do you know why PSC's can't be status 1? Roy Toutant wrote: > Right, this is one of the ways that the deck seems stacked against PSC > patients when it comes to transplants, although there may be valid medical > reasons for this rule. > > The other rule, which I think is very significant, is that patients with PSC > can only be listed at status 3 or status 2B or 2A. Status 2A is almost as > high as status 1, but PSC patients and those with similar types of liver > disease can not be listed as status 1, even if they have less than 7 days to > live. > > This does not seem right to me, but then again there may be good reasons for > it. > > Thanks, Roy T. > > bili levels for tx > > > - > > > >The nature of cholestatic liver diseases like PSC and PBC is that they > >cause very high bilirubin counts without causing some of the other types of > >problems that non-cholestatic disease causes. So PSC/PBC patients tend to > >be healthier at higher bili counts than non-PSC patients and hepatitis or > >cancer patients will not ever see the bili levels that PSC patients have. > > > >The points awarded to tx candidates for bili levels are: > > > >Points 1 2 3 > > > >Non-PSC <2 2-3 >3 > > > >PSC <4 4-10 >10 > > > > > >As you can see there is quite a difference, especially at the 3 point > >level. In the absence of other significant health problems, my > >hepatologist says he typically lists patients between 3-4 with the goal of > >transplanting around 7-8. > > > >Also, for those interested in the blood matching issue, the UNOS policy > >discusses how points are awarded for blood type incompatability and > >indicates the conditions under which livers may be transplanted when the > >blood types don't match between donor and recipient as well as which > >mis-matches are forbidden. > > > > > >Russ > > > > > > > > > >------------------------------------------------------------------------ > >eGroups Spotlight: > > " Loads " - A " truckstop " support group for trucker families. > >http://offers./click/243/3 > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 1999 Report Share Posted March 23, 1999 I really do not know the answer to this question, it is a rule that UNOS came up with a year or two ago. I think the general issue is that patients with PSC and related diseases generally have slowly progressing (but potentially fatal) disease, while some other patients that might have eaten a bad mushroom or have some other kind of liver failure might be at more risk of dying in a few hours or days, so they get to be status 1. I'm just guessing since I have not seen this policy fully explained. Thanks, Roy T. bili levels for tx >> >> > - >> > >> >The nature of cholestatic liver diseases like PSC and PBC is that they >> >cause very high bilirubin counts without causing some of the other types of >> >problems that non-cholestatic disease causes. So PSC/PBC patients tend to >> >be healthier at higher bili counts than non-PSC patients and hepatitis or >> >cancer patients will not ever see the bili levels that PSC patients have. >> > >> >The points awarded to tx candidates for bili levels are: >> > >> >Points 1 2 3 >> > >> >Non-PSC <2 2-3 >3 >> > >> >PSC <4 4-10 >10 >> > >> > >> >As you can see there is quite a difference, especially at the 3 point >> >level. In the absence of other significant health problems, my >> >hepatologist says he typically lists patients between 3-4 with the goal of >> >transplanting around 7-8. >> > >> >Also, for those interested in the blood matching issue, the UNOS policy >> >discusses how points are awarded for blood type incompatability and >> >indicates the conditions under which livers may be transplanted when the >> >blood types don't match between donor and recipient as well as which >> >mis-matches are forbidden. >> > >> > >> >Russ >> > >> > >> > >> > >> >------------------------------------------------------------------------ >> >eGroups Spotlight: >> > " Loads " - A " truckstop " support group for trucker families. >> >http://offers./click/243/3 >> > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 1999 Report Share Posted March 25, 1999 Roy, I'm not so sure the deck is stacked against PSC folks. We get consideration for such things as quality of life factors (itching, fatigue, recurrent cholangitis) and there have been recent discussions that since PSC patients have a very good record for successful transplants they are getting more of the available livers. On the status 1 versus 2A issue, I'm not sure it matters much - status 2A includes people who are in an intensive care unit with a life expectancy of less than 7 days without a liver transplant. Can't get much worse than that! Bill > bili levels for tx > > > > - > > > >The nature of cholestatic liver diseases like PSC and PBC is that they > >cause very high bilirubin counts without causing some of the > other types of > >problems that non-cholestatic disease causes. So PSC/PBC > patients tend to > >be healthier at higher bili counts than non-PSC patients and hepatitis or > >cancer patients will not ever see the bili levels that PSC patients have. > > > >The points awarded to tx candidates for bili levels are: > > > >Points 1 2 3 > > > >Non-PSC <2 2-3 >3 > > > >PSC <4 4-10 >10 > > > > > >As you can see there is quite a difference, especially at the 3 point > >level. In the absence of other significant health problems, my > >hepatologist says he typically lists patients between 3-4 with > the goal of > >transplanting around 7-8. > > > >Also, for those interested in the blood matching issue, the UNOS policy > >discusses how points are awarded for blood type incompatability and > >indicates the conditions under which livers may be transplanted when the > >blood types don't match between donor and recipient as well as which > >mis-matches are forbidden. > > > > > >Russ > > > > > > > > > >------------------------------------------------------------------------ > >eGroups Spotlight: > > " Loads " - A " truckstop " support group for trucker families. > >http://offers./click/243/3 > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 1999 Report Share Posted March 26, 1999 - Unless my bile duct is blocked due to cholangitis my bili levels are normal. Typically my SGOT/SGPT are only moderately elevated. My alk. phos is all over the place, ranging from normal to 500+. My highest bili level has been 3.6. My LFTs are done every 6 months unless something negative happens. My disease is almost completely in the common bile ducts with no evidence of scarring in the intra-hepatic ducts. I have a stent that is replaced every 6 months unless I have a blockage earlier than that. My primary problem is recurrent infections and the pus from the infection then blocks the ducts. Although we tend to pay a lot of attention to LFTs in this group it is my understanding that they really aren't that important for measuring the progress of PSC, except bilirubin. LFTs typically fluctuate dramatically in all liver diseases and PSC is no exception. My doctor says a downturn in LFTs is not significant unless it is maintained for an extended period of time, at least a year. Alk. Phos seems to be a measure of PSC activity but can't be directly related to disease progression. SGOT/SGPT are enzymes that " leak " from normal liver cells dues to liver disease but also can't be directly correlated to any specific level of inflammation or cirhossis. They just indicate that " something " is going on that stresses the liver. Russ ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 1999 Report Share Posted March 26, 1999 Russ Askren wrote: > lthough we tend to pay a lot of attention to LFTs in this group it is my > understanding that they really aren't that important for measuring the > progress of PSC, except bilirubin. Dear Group, The main areas of concern are really bilirubin, prothrombin time and albumin level. Add that to jaundice, wasting fatigue, ascites, varicies and then you have most of the picture. Penny ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 1999 Report Share Posted March 26, 1999 Thanks for the info, Russ. My doc tried to insert a stent, and my common bile duct was too narrow for the insertion. That's why I have the balloon dilation done so frequently. Your LFT's seem similar to mine, and I think mine have improved overall since the doc started the frequent ERCP's. The problem is that I now have intra-hepatic duct obstructions and increasing signs of cirrhosis. After reading so much about others' experiences from the group, I know I'll probably be in for a long wait, even though I am status 2B and have been on the list a year. My bili levels are not high enough to warrant tx. That's good news in one sense, but does leave me vulnerable for future internal bleeds, which are extremely scary. Although I have only had one, I lost 2 liters of blood in a very short time. I now make sure that I do not travel more than one hour away from a major hospital that has the capacity to do emergency banding. I'm just taking it one day at a time...I am still working half time and feeling okay, often for several days. So, I'm thinking of settling back and enjoying the fact that I'm not in crisis yet. Your feedback has been quite helpful. ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 1999 Report Share Posted March 27, 1999 Dear Russ and group, Russ, first of all thank you for all of the research that you do regarding PSC that gives us all such peace of mind. Thank you for your encouragement and uplifting support. I really do appreciate it a lot. Now, this question is for everyone...I'm trying to decide whether to go ahead and go to the ER (as my dr. suggested) or to try and stick things out at home. Wed. night I started running a fever and feeling really bad. I started an antibiotic on Thursday and by yesterday afternoon was feeling so bad that I decided to go in for bloodwork (an hour's drive from my house...so you know I felt really bad to go do that with both of my babies with me by myself!!). Well, the bili was 2.7 (about the same from a month ago) the alk phos was 500, and the others were elevated too. I'm having a lot of severe pain in the URQ, but also in my back too...which makes me think it could be kidney related. My question is...Since the liver #'s are not remarkably high since the last time they were checked, am I warranted to go in to the ER...I guess I just don't want to go in and them say " there's nothing we can do except put you on IV meds " and keep me there a week for no good reason. Russ, you mentioned that when you are obstructed your bili goes up to 3.6...since mine has been up like this for a couple of months now...does it mean I'm probably obstructed? If so, is there anything they can do to help it? Or is there a possibility that the bili will just remain this high b/c I have a sick liver? My bottom line question is...Is it possible that going in to the ER would serve no purpose and that it's just " the way things are going to be until transplant " ? I can't tell you how many times I've heard that remark. Thanks for listening...I'm going to lie down for awhile and pray about this situation.!! Love, Jacquelyn ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 1999 Report Share Posted March 27, 1999 Jacquelyn, I really think that you should go to the ER since that is what your doctor told you to do. I know it is hard for you to be away from your babies, but you really should get some antibiotics going so that you can feel better. Love, ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 1999 Report Share Posted March 27, 1999 Jacquelyn Phils doctors have put him in the hospital twice with a 101 fever and bilirubin at 400. In fact the last time it the bilirubin wasn't even that high. The fever is a sign of infection and his doctors don't feel the oral antibiotics work as well. The last time, since we went in right away they were able to get control of it in 3 days. Infact we had waited in the urgent care for 4 hours with sick people coughing on him. When they checked him in and we talked with the GI doctors the next day I asked " can't we get a priority card " and they said the people you call are supposed to have you come into the urgent care. Don't do that go straight to the ER and call us. After hearing trouble some of you have had I thank God that we hit on excellent GI specialist and an an internist that hit on the problem right a way and really seem to know what they are doing. Phil has Kaiser and it's not great for routine things but I'm changing to it so that after his cobra is up he can stay on it. My vote is for you to get to the hospital before it gets so bad that it takes them a long time to get you through it. Phil's doctors want him on IV antibiotics when his bili is high and his fever is over 101. You might be able to get to a point of getting a port and using iv at home. It's not hard. We'll add you to our pray list at Sunday School tomorrow. Peg A S>Dear Russ and group, PS> Russ, first of all thank you for all of the research that you do regarding PS>PSC that gives us all such peace of mind. Thank you for your encouragement PS>and uplifting support. I really do appreciate it a lot. PS> Now, this question is for everyone...I'm trying to decide whether to go ahe PS>and go to the ER (as my dr. suggested) or to try and stick things out at hom PS>Wed. night I started running a fever and feeling really bad. I started an PS>antibiotic on Thursday and by yesterday afternoon was feeling so bad that I PS>decided to go in for bloodwork (an hour's drive from my house...so you know PS>felt really bad to go do that with both of my babies with me by myself!!). PS>Well, the bili was 2.7 (about the same from a month ago) the alk phos was 50 PS>and the others were elevated too. I'm having a lot of severe pain in the UR PS>but also in my back too...which makes me think it could be kidney related. PS>question is...Since the liver #'s are not remarkably high since the last tim PS>they were checked, am I warranted to go in to the ER...I guess I just don't PS>want to go in and them say " there's nothing we can do except put you on IV PS>meds " and keep me there a week for no good reason. PS> Russ, you mentioned that when you are obstructed your bili goes up to PS>3.6...since mine has been up like this for a couple of months now...does it PS>mean I'm probably obstructed? If so, is there anything they can do to help PS>it? Or is there a possibility that the bili will just remain this high b/c PS>have a sick liver? PS> My bottom line question is...Is it possible that going in to the ER would PS>serve no purpose and that it's just " the way things are going to be until PS>transplant " ? I can't tell you how many times I've heard that remark. PS> Thanks for listening...I'm going to lie down for awhile and pray about this PS>situation.!! PS>Love, PS>Jacquelyn PS>------------------------------------------------------------------------ PS>eGroups Spotlight: PS> " Kosovo-Reports " - Direct reports from Kosovo/Serbia/Yugoslavia. PS>http://offers./click/252/0 PS> Quote Link to comment Share on other sites More sharing options...
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