Ethics in Transplantation: Deciding Who Gets the Next Available Organ

When it comes to liver allocation for transplant patients on the waiting list, should factors other than MELD scores be considered? I've often considered this topic, which popped up again this morning when I read about man in New York who is suspected of killing his wife yet received an emergency liver transplant ahead of 2,000+ other people on New York's waiting list.

Turns out the guy needed the transplant because he consumed rat poisin in a botched suicide attempt and the poison ruined his liver.

Was this fair? I don't know. As I've stated before, I'm glad I don't make these decisions.

Photo by Sigurd Decroos

The Waiting is the Hardest Part

Tom Petty was right - waiting is hard.

Friday I had labs drawn, a follow-up to last month's labs wherein I set a record-high ALT and AST. Blood was drawn for transplant center's standing lab order and a handful of other tests, as well as a few tests for my local internist; altogether, the tech drew about 10 tubes (no exaggeration). Additionally, I had to bring in 24-hour urine collection (THAT was fun) which will be used to gauge kidney function - an important factor to check for liver transplant patients because many experience kidney damage after the transplant.

Now, I wait. I know many of the test results will be available today, including the ALT and AST. I'm hoping I can hold on until tomorrow to call and request a copy of whatever results are currently available; sometimes, though, I get "squirrely" and can't wait.

Today I'll channel some patience and keep myself busy. As Petty wrote and sang in the song, "Don't let it kill you baby, don't let it get to you." And hey, this isn't nearly as hard as waiting for the call about my liver transplant, right?

Photo by Pedro Simão; Song and lyrics by Tom Petty

We Get THE CALL - My New Liver Awaits

Saturday, December 2, 2006 we got THE CALL - a liver was waiting for me. We informed our family and friends "group" via emails from our close friend, Bob, who served as interim communications chief while Gene was out-of-pocket. Here are those emails:

Saturday, Dec. 2 - 3:16 p.m.

Hello everyone. Bob here. Gene asked me to contact you. A compatible liver donor has been identified and Jay is currently enroute to the hospital by helicopter [note: due to stormy weather, I was actually taken via ambulance]. Jay's transplant surgery is schedule to begin this evening at 8 p.m. and is expected to take six hours. Gene, my wife Carolyn and Happy [a deacon from our church and dear friend] are driving to the hospital now. Please keep them all in your prayers tonight. I will send out updated information as it's relayed to me.


Sunday, Dec. 3 - 7:35 a.m.

Good morning, everyone. Bob again. The news from the hospital could not be better. Jay's surgery did not start until 1 a.m. and took about 5 1/2 hours. The doctors told Gene that by the time they wheeled Jay out of the OR, the liver was already functioning. It was a textbook procedure. (The fact that the docs were able to watch their favorite football team win a conference championship game probably helped also!) Jay's Mom and sister are now at the hospital. I'll try to get info about when calls and visits to Jay can start and send out another email.

Emailing Friends and Family

My family and I are blessed with the most loving, caring, kind and generous group of friends and relatives in the world. Without them, we couldn't have survived our struggle. To keep the gang informed, we sent emails before, during and after my transplant. My husband, Gene – bless him – was Chief Communicator during my prolonged hospital stay. And my sister, Dene, printed out the emails and gave them to me once I was home, which helped me piece together what happened during and after my transplant. Here is the first of the transplant emails, which I sent to our friends Dec. 1, 2006 – less than 24 hours before we received THE CALL.

Dear Family and Friends - It's official! Weds., Nov. 29, my name was placed on the liver transplant list. After months of screens and tests, meetings, doctors' appointments, medicine, red tape, side effects and lots of WAITING, I'm excited and anxious to finally reach this milestone.

Along with this good news, we learned that my blood work results show that my liver functions are deteriorating at a pretty rapid pace. Here's the scoop - a MELD (Model for End-stage Liver Disease) score is used to prioritize transplant patients; three components of a blood test are used to calculate the score. For the past five months or so my MELD score has been 20 (which is fairly elevated); but in the past four weeks the score has jumped to 24. While this is disconcerting, it significantly increases my priority for transplant.

So... it looks like Santa will bring me the gift I want for Christmas: A new liver! At least, it is my hope that the operation will occur very soon. Gene will become the official communicator for a while and will keep you posted about the transplant.

Thanks so much for all of your good wishes and prayers, which I can use now more than ever. And thanks also for spreading the word about becoming an organ donor and donating blood. It surely means a lot to me and other people who need organs, blood, etc.

Have a great holiday season! We'll be in touch. xo - Jay & Gene

The Transplant Waiting List

Waiting for surgery that will save your life. Unsure when THE CALL will come. Realizing that someone must die in order for you to survive. This part of the transplant process is hell.

Not knowing drives me nuts. I’d rather have too much information than too little. Yet most of the waiting process for transplants is, literally, in God’s hands. The docs might know a little something but they aren't very forthcoming.

I don't know how other transplant centers share information about their transplant waiting lists, but my center didn't disclose details about how many people were on its list, how sick they were, where I ranked, etc. So in the absence of information, I obsessed and searched the Internet for answers.

One thing I learned is that transplant priority is now determined by how ill a patient is, not by how long he or she has been on the waiting list. The protocol for ranking liver transplant patients changed in 2002 when the MELD score (Model for End-stage Liver Disease) became part of the calculation to determine priority among candidates. In general, MELD uses blood test results to determine the three-month mortality rate for each person awaiting liver transplant - the higher the score, the more ill the patient. (More about MELD scores another day).

I was able to fairly accurately determine my MELD score by using an online MELD calculator. Knowing my score, however, didn't answer my questions. But I got lucky.

During one of my Internet searches I stumbled upon a tremendous resource, the key to my questions, the portal to liver transplant waiting lists, aka: http://www.optn.org/ (the website for the Organ Procurement and Transplantation Network). Thirty minutes of experimenting and one advanced data report later, I had my answer: I was able to determine the number of liver transplant patients on the waiting list at my center, broken in detail by gender, race, age range, blood type, disease and more. Updated weekly, the reports kept me informed about other people on the waiting list and allowed me to better anticipate how long my wait might be once I was officially added. Simply knowing this info helped me manage my expectations and put my mind a bit more at ease.

FYI for patients awaiting other types of transplants: The website includes info for all types of organ transplants, not just liver, and includes centers throughout the US. Access is free and available to anyone.