Guest guest Posted November 19, 2004 Report Share Posted November 19, 2004 Ali; Barb in Texas recently posted on this subject (see message #65744 in the archives): " " Listing " depends on more than your MELD score, the transplant hospital's own rules also apply and they can be different hospital to hospital. Ken's MELD score was 10 all of 2001 and has gone up to 14 and stayed there for over a year and he still isn't listed even though his doctor recommended him for listing. " Best regards, Dave R. > This is a group post- please anyone feel free to jump in. I need the info. > At what stage were you listed? As in MELD score ie. 10 , 12, 15 etc. > Ali > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2004 Report Share Posted November 19, 2004 Ali, My computer froze when I tried to write this earlier, but I'll try again now. I was listed just prior to the implementation of the MELD system in late 2001. My first MELD score was 11 once they calculated it. I was on the list with my labs being certified every three months for a long time. My MELD went up to 14 and hung there for a long period (at least a year). I'm now up to 19, and I can feel the difference. I still haven't " decompensated " (gotten ascities, varicies or encephalopathy, but I am starting to get some edema in my extremities). I can't believe that 's son isn't listed with a MELD of 14 if for no other reason than to be followed closely enough to catch it when/if things get worse, but I do know that different centers have different philosophies. Hang in there - there are some great centers out there. I've been through one center that was horrible on the first visit. They have one more chance to redeem themselves right after Thanksgiving. I've decided that even though I've gone through a lot to get them enough information to get me listed that unless they're a good fit, I'm not going to bother...Above all else, I need a sense of trust when I consider this major surgery! The two centers where I'm listed now are wonderful places -- town and University of Pennsylvania. Have a good weekend, Deb in VA PSC 1998, UC 1999, Listed Ltx 2001, MELD 19 > This is a group post- please anyone feel free to jump in. I need the info. > At what stage were you listed? As in MELD score ie. 10 , 12, 15 etc. > Ali > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2004 Report Share Posted November 19, 2004 Ali, I received my transplant in 1998 (before the use of MELD) when I had a MELD score of about 18. I was listed before any serious symptoms showed up so I could accumulate time on the list - MELD at listing was probably around 6 or less. This time around I started the listing process of getting all the tests and other prerequisites in order in September. In June, because of a vitamin K deficiency, my MELD was 31, dropping to 17 after 2 weeks on K supplements. On 10/1 because of a rise in Creatinine it was 19 and on 11/2 21. I am still not formally listed, I have to get my dentist's OK and the final review, but that is just a formality. My hepatologist has asked if I want a liver transplant now and I've told him that I'd just as soon wait, the current liver is doing OK. Like Deb I have no ascities, varicies or encephalopathy and I don't even have any pitting edema. The creatinine rise does worry me, but I believe it is due to the tacrolimus (anti-rejection med) and is not related to liver failure. So I'm planning to keep on with this liver as long as possible. Tim R, ltx 1998, recurrant PSC 2002 > I'm now up to 19, and I can feel the > difference. I still haven't " decompensated " (gotten ascities, > varicies or encephalopathy, but I am starting to get some edema in my > extremities). I can't believe that 's son isn't listed with a > MELD of 14 if for no other reason than to be followed closely enough > to catch it when/if things get worse, but I do know that different > centers have different philosophies. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2004 Report Share Posted November 20, 2004 I am basically a " lurker " and have only posted once before...but now my disease has progressed and I wanted to know if anyone is listed or has had a transplant at the University of Michigan in Ann Arbor. I just saw a hepatologist there this week - Lok - and she wants me back in January to see the surgeons, social worker, etc. in the tranplant clinic to begin the listing process. I was diagnosed in May 01 with PSC and UC in June 03. I had a large GI bleed just this October and was found to have esophageal varices that required 2 episodes of banding...was a real shock for me, just didn't believe my disease had progressed that far even though I had cirrhosis confirmed by biopsy in May 01. No acistes or edema yet, but I do have an elevated bilirubin and very low albumin. So...I would like to hear if anyone has experience with U of M and what they think about it. Thanks a > > This is a group post- please anyone feel free to jump in. I need > the info. > > At what stage were you listed? As in MELD score ie. 10 , 12, 15 etc. > > Ali > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2004 Report Share Posted November 27, 2004 a, Sorry this is so late but I just got back in town. I recieved my liver tx at the U of M and have nothing but good things to say about them. I've seen lok, but my GI is Fontana. i've recieved excellent care there and do not hesitate to recommend it. Tim R also was transplanted there. Do you live close? Tim L Re: MELD Score > > > > So...I would like to hear if anyone has experience with U of M and > what they think about it. > > Thanks > a > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.