What is Cirrhosis
Cirrhosis is a consequence of chronic liver disease characterized by replacement of liver tissue by fibrotic scar tissue as well as regenerative nodules, leading to progressive los...
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MELD scores
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Hi everyone, my little sister is 13 years old and she was diagnosed with liver disease. she is currently on the waiting list, with a MELD score of 22. I was just wondering if anyone has had a transplant, and what their score was before they got the transplant, and how sick they really got before they ended up getting it. I know that the waiting is really a game, and some people get one and some people don't. I suppose I am just very scared at this point. We have an appointment with her liver specialist on Wed. and we see how things have been going and if her score is going to get bumped up. She also has heart problems, so she needs the transplant before her heart gets too weak. There are small things I am starting to notice, but I think that my subconscious is blocking them out. She has to wear oxygen tubes at all times, with 4 liters of concentrated h2o pumping in her nose. she has some shunting in her lungs, and thats what we are hoping the new liver will help fix. Her nail beds, and lips turn a purple kind of color if she does a lot of activity without her oxygen tubes on. well i suppose i should cut this short, I just wanted some experience in this area.
thanks in advance Posted on 07/03/09, 02:07 am |
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Yes I had a transplant a year and two weeks ago I was extremely sick days to a few weeks from death. I was placed on the list 11 years earlier prior to the use of the meld system. Due to my particular liver disease and how it affected the blood tests included in the meld I sat at around 12 to 16 for most of those years with no change in the tests but ever worsening symptoms. In the week prior to transplant my score started shooting up fro 3-5 points a day and was at 35 and climbing rapidly the last I remember. I don't believe you can compare our cases. I believe the fact that she is so young will work in her favor.
The symptoms you are describing sound more like they are due mostly to her heart problems and it sound as if that is going to have more bearing on if and when she gets a transplant than her meld score. It sounds as if she has a very unique case so the regular rules may not apple , but that's just a guess on my part. May God bless her and your family and guide the doctors in finding a solution. 
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Well, the problems that I described are due to the shunting I was talking about. I am unsure how to explain with complete medical terms so I don't want to sound stupid. But her case is indeed a very rare one. What we are praying, is that when she gets a new liver, that she will be able (in due time of course) life a more normal life without the oxygen tanks and cpap at night. And I believe that her MELD score was a 17 before the exceptions they made with her heart and lungs.
I'm so sorry that you got so sick, but I am very happy that you got your transplant. Thank you so much for your feedback.
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don't worry about stupid questions, we'll try to help you as well as we can, we all have doubts and there is a lot of mixed up information out there.
Good luck to your sister!
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