“Shouldn’t God decide that?” I love this innocent and sweet comment that my infusion nurse said to me when I was describing how the liver transplant wait list works. All of this is new to me, so I’m still learning. However, since going through the liver transplant evaluation process, I learned quickly that MELD score matters!
At first it seemed insensitive that my need and urgency for a liver transplant would get equated into a number, but that is how the system works and I’ll explain why. MELD stands for Model for End-Stage Liver Disease. It was implemented February 27, 2002 and is a numerical scale, ranging from 6 (less ill) to 40 (gravely ill), used for liver transplant candidates age 12 and older. It gives each person a ‘score’ (number) based on how urgently he or she needs a liver transplant within the next three months. The number is calculated by a formula using four routine lab test results:
- bilirubin, which measures how effectively the liver excretes bile
- INR (prothrombin time), which measures the liver’s ability to make blood clotting factors
- creatinine, which measures kidney function (impaired kidney function is often associated with severe liver disease)
- serum sodium, which measures the severity of conditions such as portal hypertension
Now, who came up with this idea? It was United Network for Organ Sharing (UNOS) that created this system to prioritize candidates waiting for liver transplants. Their statistical formulas help tell who needs a liver transplant most urgently. Since UNOS is a non-profit that serves as the nation’s transplant system, also known as the Organ Procurement and Transplantation Network (OPTN), all transplant programs and organ procurement organizations throughout the country are OPTN/UNOS members and are obligated to follow the policies OPTN creates for organ allocation.
As with most things in life, there are exceptions. The only priority exceptions to MELD are the categories known as Status 1A and 1B. Status 1A patients have acute (sudden and severe onset) liver failure and a life expectancy of hours to a few days without a transplant. Status 1B is reserved for very sick, chronically ill pediatric patients (age less than 18). Less than one percent of liver transplant candidates are in these categories at any one time. All other liver candidates age 12 and older are prioritized by the MELD system.
A patient’s score may go up or down over time depending on the status of his or her liver disease. Most candidates will have their MELD score assessed a number of times while they are on the waiting list. This will help ensure that donated livers go to the patients in greatest need at that moment.
MELD has been shown to rank patients on the waiting list reliably in terms of their short-term risk of death. The MELD formulas are simple, objective and verifiable, and yield consistent results whenever the score is calculated.
I tend to be the exception to the rule in life and my path with primary sclerosing cholangitis (PSC) is no different. Even though I keep getting infections and sepsis due to the scarring in my bile ducts from PSC, my liver lab numbers are normal. This then gives me a very low MELD score, which puts me at the bottom of the waitlist. In situations like mine, where my transplant team believes my case qualifies for an exception, my doctor can submit information to the regional review board (RRB) and request a higher score. The RRB will consider the medical facts and determine whether or not to grant a higher score.
Last week my PSC specialist had a conference call with the regional review board, who decided to list me at 28 points, compared to where I was at 6. My doctor was hoping for 35, but she said 28 was a good starting place. Depending on the state and transplant center you are listed, it makes a difference as to what number range will put you in a position to start receiving offers for a liver. For instance, 35 points will put me in the range at my transplant center, California Pacific Medical Center (CPMC), to start receiving offers for a liver. However, 28 points at Washington University would put me at the top of their waiting list and I could potentially get a liver transplant in several weeks versus waiting six or so months at CPMC.
Looking at the big picture, my disease will only get worse and I will continue to get sicker. The past six months have been intense with infections, that we can’t imagine the toll that the next six months will take on my body. Now, we (my husband and I) need to decide if I continue to be listed locally and work my way up the waitlist as I continue to get more and more sick, or do we travel out of state and live somewhere else for several months in order to receive a transplant sooner and while I’m still in somewhat good health?
There are a lot of decisions we must make when living with chronic illnesses and then there are times where we must trust that our doctors are the specialists and have our best interest in mind. At this point, I am taking it one step and one day at a time, as thinking beyond that can be quite overwhelming. Needing a liver transplant is a lot to process and manage, let alone understanding how the MELD score works and what transplant center is best for our individual case. Please know you’re not alone, as I’m in the trenches with you learning as I go, too.
Throughout all of this, there is one thing that remains constant, and that is my gratitude for all of the organ donors out there who selflessly gift us with a second chance at life. Because that is what I am fighting for – a chance to receive a new liver and keep living life to the fullest.
What advice do you have to share for those waiting for a life-saving transplant?
Big thanks to California Pacific Medical Center (CPMC) for this incredibly valuable information on MELD scoring. For more information, I suggest connecting with your doctor and transplant center. Also, UNOS’ Patient Services phone line (888-894-6361) can provide information about the OPTN and UNOS, allocation policy and other resources available to you. Additional information is available online at the following websites: