Guest guest Posted August 25, 2000 Report Share Posted August 25, 2000 Well, my spirits have dropped. I have been reminding myself that I just started to display physical symptoms therefore I am still in the early stages......but if my albumin is 2.9..........I already am accumulating points towards listing. In a message dated 08/25/2000 8:47:03 AM Central Daylight Time, thegeorges@... writes: << 3.5 is on the very low end of normal (if it goes to 3.4 he would get an extra point towards listing). 3.9 is pretty good. >> athan, So you are saying if the albumin is low we get points toward listing not if it is high?? Mine is 3.6 which is the lowest it has ever been and I was congratulating myself that it was good. Thanks for straightening me out. Barby Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2000 Report Share Posted August 25, 2000 > athan, > So you are saying if the albumin is low we get points toward listing not if > it is high?? Yes, this is one of the few LFTs that tend to run low in PSC. If it's greater than 3.5 you get one point towards listing (in the US). between 2.8 and 3.5 you get 2 points and below 2.8 you get three. Actually I'm not sure where exactly the break is... if the albumin has to be 3.5 or below 3.5 before you get two points. According to the UNOS website, you get 2 points for 3.5, but my doctor didn't give me an extra point when mine was 3.5 a few months ago.... athan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2000 Report Share Posted August 25, 2000 So here is the ultimate question, how many points to do you accumulate to get listed? And what are some of the other defining categories that get points? in MIchigan Re: albumin > athan, > So you are saying if the albumin is low we get points toward listing not if > it is high?? Yes, this is one of the few LFTs that tend to run low in PSC. If it's greater than 3.5 you get one point towards listing (in the US). between 2.8 and 3.5 you get 2 points and below 2.8 you get three. Actually I'm not sure where exactly the break is... if the albumin has to be 3.5 or below 3.5 before you get two points. According to the UNOS website, you get 2 points for 3.5, but my doctor didn't give me an extra point when mine was 3.5 a few months ago.... athan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2000 Report Share Posted August 25, 2000 > Well, my spirits have dropped. I have been reminding myself that I just > started to display physical symptoms therefore I am still in the early > stages......but if my albumin is 2.9..........I already am accumulating > points towards listing. > Don't be too upset! My albumin was 3.3 back in '91 and since it's been up as high as 4.5, and stayed steady around 4 for several years. It's only been in the last couple years that it's started to drop again. athan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2000 Report Share Posted August 25, 2000 > So here is the ultimate question, how many points to do you accumulate to > get listed? And what are some of the other defining categories that get > points? OK, I tried to copy the table below which shows the CTP scoring system that UNOS uses. Hope you can read it with the formatting... You can also go to http://www.unos.org/About/policy_policies03_06.htm and see this table as well as more on the scoring criteria. You have to scroll down a ways to get to the table. Basically, you need 7 points to be listed as a status 3, and you get 5 of those just basically for showing up with PSC. Right now I've got 6 points (the basic 5, and 1 for encephalopathy). If my albumin goes down a bit I'll get one more and have the 7 for listing. The scoring gets quite a bit more complicated when you start moving up the list... it's all detailed at the URL I gave above... Also, note that you've got to substitute the values at the bottom of the chart for the bilirubin values shown, since we have PSC... Child-Turcotte-Pugh (CTP) Scoring System to Assess Severity of Liver Disease Points 1 2 3 -------------------------------------------------------------------- Encephalopathy None 1 - 2 3 - 4 Ascites Absent Slight moderate despite diuretic Bilirubin (mg/dl) <2 2-3 >3 Albumin (g/dl) >3.5 2.8-3.5 <2.8 Prothrombin time secs. prolonged) <4 4-6 >6 or (INR) <1.7 1.7-2.3 >2.3 -------------------------------------------------------------------- For primary biliary cirrhosis, primary sclerosing cholangitis, or other cholestatic liver diseases: Bilirubin (mg/dl)*<4 4-10 >10 * For cholestatic liver diseases, these values for bilirubin are to be substituted for the values above. ------------------------------------------------------------------ athan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2000 Report Share Posted August 25, 2000 So, I would get 5 for PSC and another 2 for 2.9 albumin? Re: albumin > So here is the ultimate question, how many points to do you accumulate to > get listed? And what are some of the other defining categories that get > points? OK, I tried to copy the table below which shows the CTP scoring system that UNOS uses. Hope you can read it with the formatting... You can also go to http://www.unos.org/About/policy_policies03_06.htm and see this table as well as more on the scoring criteria. You have to scroll down a ways to get to the table. Basically, you need 7 points to be listed as a status 3, and you get 5 of those just basically for showing up with PSC. Right now I've got 6 points (the basic 5, and 1 for encephalopathy). If my albumin goes down a bit I'll get one more and have the 7 for listing. The scoring gets quite a bit more complicated when you start moving up the list... it's all detailed at the URL I gave above... Also, note that you've got to substitute the values at the bottom of the chart for the bilirubin values shown, since we have PSC... Child-Turcotte-Pugh (CTP) Scoring System to Assess Severity of Liver Disease Points 1 2 3 -------------------------------------------------------------------- Encephalopathy None 1 - 2 3 - 4 Ascites Absent Slight moderate despite diuretic Bilirubin (mg/dl) <2 2-3 >3 Albumin (g/dl) >3.5 2.8-3.5 <2.8 Prothrombin time secs. prolonged) <4 4-6 >6 or (INR) <1.7 1.7-2.3 >2.3 -------------------------------------------------------------------- For primary biliary cirrhosis, primary sclerosing cholangitis, or other cholestatic liver diseases: Bilirubin (mg/dl)*<4 4-10 >10 * For cholestatic liver diseases, these values for bilirubin are to be substituted for the values above. ------------------------------------------------------------------ athan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2000 Report Share Posted August 25, 2000 > So, I would get 5 for PSC and another 2 for 2.9 albumin? Yes, I think that's right. That would give you 7 points, so at least theoretically you could be listed at this point. You may want to mention it to your doctor. Just being listed doesn't mean you have to accept a liver if you don't feel you're ready when it's offered, and by being listed early, you would be more likely to be able to get a liver (because you would have accumulated time) when you need one. athan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2000 Report Share Posted August 25, 2000 After athan told me about the points I went back and looked it up. , the Pugh score says you would get 2 points for 2.8 - 3.5 and 3 points for any thing below 2.8. Whats your bilirubin and Pro Time ? Barb stages......but if my albumin is 2.9..........I already am accumulatingpoints towards listing. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2000 Report Share Posted August 25, 2000 I first had trouble figuring out Pro Time. Than found out it really is : <14 14-16 >16 BarbPoints 1 2 3--------------------------------------------------------------------Encephalopathy None 1 - 2 3 - 4Ascites Absent Slight moderate despite diuretic Bilirubin (mg/dl) <2 2-3 >3 Albumin (g/dl) >3.5 2.8-3.5 <2.8 Prothrombin timesecs. prolonged) <4 4-6 >6or (INR) <1.7 1.7-2.3 >2.3 --------------------------------------------------------------------For primary biliary cirrhosis, primary sclerosing cholangitis, or other cholestatic liver diseases:Bilirubin (mg/dl)*<4 4-10 >10 * For cholestatic liver diseases, these values for bilirubin are to be substituted for the values above. ------------------------------------------------------------------athan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2000 Report Share Posted August 25, 2000 My total bilirubin is .5 and my indirect is .4 and my indirect is .1 My total was 2.8 2 months ago. -----Original Message-----From: T.J. Henshaw Sent: Friday, August 25, 2000 11:38 AMTo: egroupsSubject: Re: albumin After athan told me about the points I went back and looked it up. , the Pugh score says you would get 2 points for 2.8 - 3.5 and 3 points for any thing below 2.8. Whats your bilirubin and Pro Time ? Barb stages......but if my albumin is 2.9..........I already am accumulatingpoints towards listing. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2000 Report Share Posted August 25, 2000 cindy.baudoux@... wrote: > > So, I would get 5 for PSC and another 2 for 2.9 albumin? OK I messed up in my previous reply to this... you get 5 based on one point for each of the categories... that's the lowest you can get. So you would get 1 point (at least) for each of the four categories other than albumin, and two for albumin, which would total up to six points. You may have more points than this depending on your other symptoms and LFT numbers... Sorry for the goof up! athan Quote Link to comment Share on other sites More sharing options...
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