Where Are You On The List And How Long Do You Think You’ll Wait?

The allocation of livers is based on a Model for End-Stage Liver Disease, or MELD score.  This is an equation that attempts to predict survival rates based on liver and kidney profiles, specifically bilirubin, creatinine, and INR. This is the main way that people are allocated on the list with very few exceptions.  It’s all documented here, and since I am now an exception, I’ll explain that portion of the rules.

This website has a brief interpretation of what the MELD score means for a mortality rate, which is copied below:

3-Month Mortality Based on MELD Scores
40 or more — 71.3% mortality
30-39 — 52.6% mortality
20-29 — 19.6% mortality
10-19 — 6.0% mortality
<9 — 1.9% mortality

Source: Kamath PS, Kim WR; Advanced Liver Disease Study Group. The model for end-stage liver disease (MELD). Hepatology. 2007;45:797-805.

When I went into the transplant, I had a MELD score of 15, giving me a 6% 3-month mortality rate.  This MELD score is the crossover point where the  mortality risk associated with transplantation is approximately equal to the mortality rate without transplantation.  That was the impetus for going through with the transplant – expectation of a full, healthy liver at the exact time I was feeling the healthiest for surgery.  There was also a virtual 0% probability of being allocated a deceased donor organ, because I was so far down on the list, so live organ donation was the only real option for survival.

As part of the surgery, the hepatic artery collapsed, called Hepatic Artery Thrombosis or HAT, which is a serious complication.  This is where the exceptions to the MELD score start coming in.  If the HAT is serious enough, the candidate is assigned a Status 1A, which has an expected survival rate of less than 7 days and puts the candidate highest on the list.  If there is HAT associated with a transplantation which doesn’t fall into this serious condition, the organ transplantation committee can petition for a virtual MELD score of 40 for a duration of 90 days, putting the candidate ahead of all other chronic illness patients, whose highest MELD score can be 39.

I have the virtual MELD score of 40, very close to the top of the list – behind those candidates with very serious liver conditions, but ahead of others with chronic illnesses.  My surgeons have the right of refusal, so if an organ comes along and the Status 1A patients don’t accept it, they keep going down the list until someone takes the organ.  The surgeons gave me an inkling that last week, I was about #5 on the list in this region.  Those are pretty good odds considering there are 827 people on the liver transplant list.  That puts me in the top 0.6% of the list.

How long am I expected to wait?  Good question.  It’s been 3 weeks so far, so it’s at least that long.  Using some fuzzy math and big assumptions, last year region 1 had 257 deceased donor liver transplants, which is approximately one every 1.4 days.  In this crude assessment, in the 21 days time I’ve been waiting, there have been about 15 liver offers. Unfortunately, the 257 deceased donors are not well represented of the population.  The majority are 50+ years old at the time of death.  There are only about 55 deceased donors between the ages of 17 and 40, which I think my surgeons would be looking at for “perfect”.  In this case, that’s one liver every 6.6 days.  being number 5 on the list, the nominal time would be about 33 days to find the perfect liver.  I still have 12 days to go to my calculation of “probable” time to find an adequate deceased donor, but this is all imperfect math.  I’m willing to hear about one today, tomorrow, next week, or even later.  I just hope it comes and it is perfect.

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4 Replies to “Where Are You On The List And How Long Do You Think You’ll Wait?”

  1. We have been following your notes and are eagerly anticipating your perfect liver. Thank you for helping us feel involved and explaining the details – we are thinking of you and Logan often, and your blog has been a window into your amazing strength and serves as a model for the rest of us. We wish we could do more, but please know that Paris and I are thinking of you all and pulling for that liver to arrive asap. We are looking forward to cooking some high-protein vegan meals for you two soon!

  2. As always, your analytical assesment of the situation is appreciated! Glad to infer that the engineer brain is still hard at work 🙂 Keep posting and we will keep the positive energy headed your way which cannot be empirically measured…buuuuut is 100% awesome. Go You Derek!!!

    1. It’s not called the pragmatic hepatic for nothing! I’m always trying to assign numbers to things to make me feel better.

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