How to Get a Liver 101

There are two very different pathways to a liver transplant: through a deceased donor and a through a living donor.

Deceased Donor

This is how the vast majority of liver transplants occur. A healthy liver is removed from a deceased donor and transplanted into the recipient. By the way, if you’re not already an organ donor, click here to become one.

With the deceased donor option, recipients are in a “competition” with one another for the available donors in their region. In this region (Region 11). So, what determines how donated livers are distributed? Well, since 2002, livers have been distributed based on each patient’s MELD score. MELD, which stands for Model for End Stage Liver Disease, was developed by the Mayo Clinic, and is a number  that is derived from a handful of bloodwork lab results as an assessment of the severity of each patient’s illness. Put bluntly, the MELD number is correlated with the likelihood that a patient will die over the next 90 days.

MELD Score      90 Day Mortality
40 or more             71.3%
30-39             52.6%
20-29             19.6%
10-19               6.0%
<9               1.9%

When a donor dies, the Organ Procurement Organization for that region searches its database for all those individuals who match the donor on a number of physiological characteristics including blood type. Among those who are a physical match, the recipient with the highest MELD score receives the liver.

There are two specific things someone can do to improve their odds:

  1. Get listed in another region: This will expand the pool of potential donors. Granted, it also broadens the pool of recipients competing for a liver, but statistically it’s advantageous to be listed in multiple regions. While there is no legal limit to the number of regions someone may be listed in, there is a practical limit — the need to be within 4-6 hours of the transplanting hospital from the time the recipient receives The Call.
  2. Get sicker: This sounds ridiculous, but it’s true. Based on the current national policy for distributing livers, as your MELD score increases, the odds of matching increase.

diceWhy is waiting such a big deal? Because my disease, primary sclerosing cholangitis (PSC), carries with it a risk of cholangiocarcinoma, which is a dire diagnosis. Cholangiocarcinoma is what killed Walter Payton, the NFL player, in 1999. It’s also what caused my mom’s death in August 2008. I have a 15% chance of being diagnosed with cholangiocarcinoma. That sounds like a small percentage. Unless you’re me. It’s also important to note that the MELD score does not consider the risk of cancer.

Living Donor

In a living donor transplant, a segment of a healthy person’s liver is transplanted into the recipient. This is made possible by the fact that the liver is the only organ that can regenerate. Within weeks, both the donated segment and the remaining section of the donor liver will grow to normal size.

The obvious challenge with this option is finding a donor. This is not minor surgery and, as with any surgery, there are risks. In addition, the donor can expect to face a minimum of several weeks of recovery. It’s hard to imagine asking anything more of someone, and transplant programs wrestle with that, and the moral and ethical dilemmas it raises. How do you ever thank someone for that, or show gratitude in any way proportional to their generosity? Is it reasonable to have someone to face this sort of risk?

There are some significant advantages with this option, though. First, the outcomes are very good with the living donor option, with survival rates generally exceeding 90% for the first year (Please note, results like this ONLY occur in transplant centers that have years of experience with living liver donors). Next, it can be scheduled. This means not only do recipients get to pick when the surgery is done, but they have more say in where it’s done because they’re no longer limited by the need to be within 6 hours of the transplanting hospital. They can go anywhere…anywhere their health insurer will allow. Finally, they’ll know who their donor is. Hey, if I’m buying a car, I’d like to meet the prior owner. Why wouldn’t we want that same opportunity if we’re getting a liver? Given the chance, I think we’d all have a few questions about where our new liver has been and what it’s been doing!

If you have any questions about being a living donor, click here.

For that matter, if you’d like to consider being a living donor and your in Virginia, contact April Ashworth, or any of the other transplant coordinators at the Medical College of Virginia at 804-828-4104. She’s got the answers to any questions you might have.

12 comments

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  1. k

    Well, good luck to you. Hope you have the $500,000 that a liver costs, not to mention the anti-rejection meds. FYI did you know the ‘list’ for livers costs your insurance company $700 a year to be on….doesn’t sound like much; but someone is making some money when you consider 3 million Americans have hep c and will be needing a liver.
    Guess those corporations have to come up with something as the gasholes are about to run out of product.

  2. Danielle

    Hi Mr. Varner,
    Thanks for sharing your story, I was combing the web for information and was led to this website. My Husband Richard got on the list August 18,2011. It took 20 months. His MELD score started at 9 and is now 28. He is extremely ill and has had several episodes of internal bleeding, spontanious bacterial peritonitis, ascites, kidney troubles, anemia, low blood pressure and a bunch of other nasty problems. I hope you get your transplant soon, are your not listed as status 1? I was reading about that on UNOS last night. I was looking for an oline support group because I am overwhelmed at this point. LLUMC released him 2 days ago and he is very ill, as a caregiver you have to be ready at all times like a fireman at the station, because it is not a matter of if but when. Thanks for providing a place to share,
    Sincerely Danielle

    1. Janice

      Did it take 20 months to get on the list? I was told that I have to have a Meld Sore of 15 to be on the list. I’m so glad you’re husband has you to care for him because I understand how terrible he feels all the time.

  3. David Foox

    I recently came across your blog while researching Organ Donation issues. I have a personal interest in the topic – a family relative with Cystic Fibrosis was lucky enough to receive a double lung transplant from an iron man athlete killed in an accident. He “accidentally” received a great set of lungs and has continued to live a full and fruitful life – all great inspiration for my cause. I have since taken it upon myself to help draw awareness to this cause and try to get as many people as possible educated on the issue.

    To do this, I have roped in an army of ORGAN DONORS. please see my toys and proceeds in the passed have gone to one of several donor charities (Gift of Life Michigan, NYODN, Donate Life, etc). here is the website and I wish Steve Jobs a healthy recovery.

    FOOX

    http://www.foox-u.com/vinyl/organ-donors-by-foox.html

    ‘No one wants to die. And yet death is the destination we all share. No one has ever escaped it.’ – Steve Jobs of APPLE (liver recipient)

     

  4. Murray Olsen

    Good to read other people’s experiences. I’ve got HCV and inactive (for now) HCC, with a MELD score of 13. In Brisbane I need to be 15 to get on the transplant list.

  5. Shelby McDaniel

    Bill, how are you doing?

    Shelby

  6. Anonimous Donator

    hello. did u found a liver? maybe I could give a piece of mine. I am young and healty

  7. JENNIFER

    Hello, My husband has a meld score of 13 but he is so sick. He needs a liver. I think he will be put on the list sooner then later. He has a blood type of O. I think positive. I am not. I would give hime part of mine. I am 5 foot 4 inches. He is 6 foot. I guess that is a problem too. I wonder if there is a list where I could help someone they love….. and someone could help my husband…… like a trade. ….

    1. Alison

      I had PSC- primary sclerosing cholangitis. and my MELD score never got very high and i needed a live donor. no one in my family was a match, so we reached out to everyone we knew, even my college and my donor was a student. i recommend reaching out to your town or state, even writing an article in the newspaper!

  8. chris

    My husband is 39 years old suffering from cirrhosis. diagnosed in november of 2012. He was placed on the liver transplant list here in florida at the mayo clinic in June’12. We have waited 3 months and it seems like an eterniity. He was a 16 when placed and his meld dropped as low as 14. He is now on the climb again at 17 and feeling absolutely HORRIBLE!! No energy and in constant pain. They say he should be transplanted within the year. They gave him a 2 year life expectancy without one. Not acceptable. We have 3 small children and a life….or did have one. The waiting is the hardest part of this whole process. He has had several bouts of peritinisits and hospitalized on 2 occasions. Also was having ascites drained 5 liters every 5 days until a TIPS procedure was done in June’12. No drains since. Also prone to encephalopathy. It is awful that you have to wait to get severly ill before you can get an organ. Wish there was a better way…..

  9. Jenny

    I’m wondering if you or anyone here could help me with knowing how to get on the list in other regions. My dad has been on the transplant list for 7 years, and we only recently found out this was possible. His MELD score waivers between 22-26 depending on the week, and he has started to need weekly taps to drain the fluid from around his abdomen. He is starting to lose hope so I am trying to do my research and learn more about getting him on multiple lists. Any help would be appreciated!

  10. Alicia

    My husband is 42 and had his first liver transplant 16 years ago. He has Crohn’s disease which caused PSC and now also has kidney disease and diabetes and is in need of a liver and kidney transplant. We live in Texas and our transplant center is Dallas he has a meld score of 20 and they won’t even list him yet. It is so difficult watching his quality-of-life to Terry at such a young age. It is the most difficult far too young children. We are considering searching in another region that will listen now so that we do not have to wait.

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