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, I’m literally in competition with other liver recipients for the available donors in my region. In this region (Region 11), about 600 liver transplants will occur over the course of 2009, and there are 1000 of us on the list waiting for a liver. During that same time, more potential recipients will be added to the list, and about 150 people on the list will die. So, what determines how the available livers are distributed? Well, since 2002, livers have been distributed based on each patient’s MELD score, which calculates a single number as an assessment of the severity of your illness. MELD, which stands for Model for End State Liver Disease, is a system that was developed by the Mayo Clinic. MELD scores range from 6 to 40. The majority of recipients are transplanted when their score reaches the mid-20s. Today, my MELD score is 13.
Here’s exactly how it works. 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 is given the liver. With a MELD score of 13, I am pretty far down the list, so it’s highly unlikely that I’ll match any time soon. In fact, for a recipient with my MELD score and my blood type (“O” positive) the wait in Region 11 can be as long as two years.
There are two specific things I can do to improve my odds:
- Get listed in another region: This will expand the pool of potential donors. Granted, it also broadens the pool of recipients with whom I’m 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 I may be listed in, there is a practical limit — the need to be within 4-6 hours of the transplanting hospital from the time I receive The Call. Since I don’t own a jet or a helicopter, a 6-hour radius from the hospital is not especially large.
- Get sicker: This sounds ridiculous, but it’s true. Based on the current national policy for distributing livers, as my MELD score increases, my odds of matching increase. My MELD score has been climbing since January 2009, so I do expect to move up the food chain. I’d strongly prefer to be transplanted as early as possible since, other than the liver disease, I’m healthy and fit enough to have a very positive surgical outcome. That’s not the way the rules work, though. So I wait.
Why is waiting such a big deal? Because my disease, primary sclerosing cholangitis (PSC), carries with it a risk of cholangiocarcinoma, which is a terminal 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.
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 I have to admit that I’m wrestling with that, and am not yet comfortable with it. How do you ever thank someone for that, or show gratitude in any way proportional to their generosity?
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. Next, it can be scheduled. This means not only do I get to pick when the surgery is done, but I have more say in where it’s done because I’m no longer limited by the need to be within 6 hours of the transplanting hospital. I can go anywhere…anywhere my health insurer will allow, and mine allows for some flexibility there. Finally, I’ll know who my donor is. Hey, if I’m buying a car, I’d like to meet the prior owner. Why wouldn’t I want that same opportunity if I’m getting a liver? Given the chance, I think I’ll have a few questions about where my 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, 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.


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.
By: k on August 1, 2011
at 12:39 am
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
By: Danielle on August 24, 2011
at 10:00 pm
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)
By: David Foox on September 16, 2011
at 4:35 pm