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  • 18 months prior to transplant, my MELD score was 40 and my kidneys had shut down.  But over then next year and a half, my kidneys somewhat recovered and my MELD score began to drop, all the way to 15 when I was listed.  I did have ascites, with 7-8 liters removed each week, but I know there are are no bonus points associated with ascites.  A after being listed, I received a transplant 1 month later (clean liver).  Not sure why or how it happened.  No doubt, I was extremely fortunate.  My last blood test (1 week before transplant), my MELD score had dropped to 14.  Suffice it to say that I could not have been more surprised to get "the call".

    Trying to make sense of it, at least for me, is impossible.  What I do know is that there are a lot of factors, beyond MELD score and bonus points, that go into the decision of who is offered an organ, such as geographic location, blood type, physical size, patient health, etc.  At the end of the day, it's clear they try to allocate the organs to those most in need, but those non-MELD score factors can have a huge impact.  At least it did for me.

  • Hi Owen, just getting back on site here.  I have been listed for liver transplant now going on 14 years and counting due to low meld scores.  They dont cut you off the list if you go into what is called here in Washington State as Status 7.  You just dont get any calls but hold your place in line.  You do not advance up the line unless you become more symptomatic, develop cancer, or your meld score increases ( usually your symptoms will change as well) then you become active status again.  Hope this helps.  Linda MateRN

  • Hello Owen, I was put on the list with a MELD score of 7. I will go up in score after my exception points are effective (soon). While I have a normally functioning liver I have damage from ~25 years of Hep C and had two small tumors diagnosed as liver cancer. The only criteria I have been told for being REMOVED from the list would be if I developed more than 3 tumors at any one time or had a single tumor greater than 5cm diameter. I think every case is different but generally would say that whatever condition caused you to be recommended for a transplant in the first place would not go away. As an example, only 30% of people with liver cancer that had it detected early live for even 5 years - a prettty bleak probability.

    • Hi as a rule you can have up to 3 tumors at once as long as they are up to or under 3 cm.  I have HepC (treated 3 times now gone) and cirrhosis and have delt with cancer 2 times.  I am still listed with a low meld, but on hold status. Take care.

       

      • Linda, that is interesting that you did not get any exception points if you are diagnosed with liver cancer. My score was raised from 7 to 28 on October 27 after 6 months listed at a meld of 7.

         

        • Hi Subaka, I have been trying to keep the liver I have although damaged and scared.  Gratefully, my tumors were small, 1.5cm and I choose to treat them with RFA (radio frequency ablation).  I dont want to nor would I tolerate chemo.  I remain on inactive status as a saftey net and get scanned every 3months for up to two years.  If I were to develop more or larger tumors, then I could go back to active status and get those points. Since UNOS has changed 28 is as far as you can go. Here at UW they are transplanting up into the 30's for meld scores.  If I get points for tumors and do activate I just hope that the tumors wont get too big or I die before I get a new liver.  Its a juggling act for sure, but at age 67 I will probably choose to treat as long as my liver holds out.  I am better since beating HepC, but still not where I should be in a normal life.  As for now, I can live with it.  Good luck.  Hope your liver comes soon.

           

  • Hi Owen. I started on the list at Mayo Clinic-Phoenix, in 2007, with a MELD of 6. Two years ago, with a MELD of 15, they tried to find a liver for me because I'd been listed so long and was getting so much sicker (even with the low score). I finally had a living donor transplant in October 2017, at UW Madison with a score of 15. They wouldn't have transplanted me at UW if my sister hadn't been accepted there. She was denied at Mayo. They didn't like one of her test scores. I'm 8 months post. It was rough for awhile but I'm doing great. Anyway, hang in there! Cindi 

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