Getting Listed for Transplant
A key step in your journey to transplantation is getting listed for transplant. If you’re wondering how to begin, we’re here to help!
When a transplant candidate has been evaluated and approved for transplant, they’re added to the national waiting list managed by the United Network for Organ Sharing (UNOS). As donors are identified, they are run through UNOS’ national computer matching system to identify a recipient that matches their unique characteristics. Once you’re officially listed, you can be considered for a deceased donor organ that comes available, provided it matches with you and your need. The computer system will categorize your listing based on many variables including your blood type, size, and current medical condition.
There are several steps to being placed on the UNOS transplant waiting list:
First you’ll have a transplant evaluation at a transplant center
This evaluation will likely include several days of testing and consultation with various transplant professionals. Each person on the team will consult with you and determine if you’re a suitable candidate for transplant.
Some patients think they’re automatically listed once their transplant evaluation is complete, but that’s not the case. While the evaluation is a major milestone in the process of getting listed, there are two more important steps.
The transplant team meets to discuss your case
Each member of the multidisciplinary transplant team presents their findings about your evaluation. Once your medical information is reviewed by the multidisciplinary team, a consensus is given to either place you on the list, to defer your listing pending more information, or deny you for transplant. A defer or deny outcome needs to be discussed with your care team. There could be alternative treatments for you other than transplant, or your care team might need more information before they are able to decide when you should be listed.
If approved for listing, you'll be added to the UNOS database
Once you have been approved for listing, a member of the team, an RN Care Coordinator if you’re being treated at Mayo Clinic, will add your information to the UNOS national database. Your hospital will send you a registered letter in the mail to let you know you have been listed and the RN Care Coordinator may notify you via telephone, as well. Once you receive this letter, it’s official – you are LISTED for transplant.
Your listing process is regulated by UNOS. Any hospital where your evaluation takes place needs to follow the steps above to get you properly listed on the transplant waiting list. Understanding these steps can help alleviate concerns or questions you might have about being listed for transplant and begin your waiting time for that lifesaving organ. If you have questions about this process or when you will be listed, contact your transplant center.
Are you currently listed for transplant? What surprised you about the process?
- Explore Mayo’s Transplant Center.
- Request an appointment.
Interested in more newsfeed posts like this? Go to the Transplant blog.
@mayoclinictransplantstaff I have had my transplant, at a different center than Mayo, but this is all pretty accurate for my center also. I have wondered though, and for some reason never asked at my center, what causes your MELD to increase if your labs have not changed significantly? I was at MELD 28 when I was transplanted but due soon for my MELD to increase. Does that just happen by virtue of the fact you are on the list? Also, does the transplant center have any leeway in choosing who will get the liver? Things were going downhill for me when I got the call but as I mentioned my MELD had not increased, and in Boston, where I was transplanted, MELD 28 is low to qualify. Would my having severe ascites at that point contributed to my getting “the call”? I also was having trouble with my blood work — hemoglobin and hematocrit both were low, so low at one point that I was hospitalized for transfusions. I was pretty miserable. Someone said it was decided that it was my time but I assumed that they could not really make that decision.
I am not sure how the MELD comes into play, I am scored at 29 and been listed 9- 10 months I got cancer but I am in decent shape. I am not activated yet so not sure if the MELD plays the full part. Some times I think its just a blessing from above that things happen for that reason. One DR told me I could go another year without my score going up or having be activated.
@jerrydrennan I am confused. By virtue of your MELD being tracked and being at 29 how are you not activated yet? I presume by "activated" you mean not yet on the list of people waiting for transplant. These MELDs can get very confusing since they don't always tell the whole story.
@jerrydrennan and @contentandwell my husband was listed on the transplant list at a 7. He was given 21 "exception points" in February due to having liver cancer. That brought his score up to a 28 and he was activated at that time, which means we have to be ready to go at a moments notice. I'm confused too that you aren't activated at a 29 and that they said id could be a year or more before your transplant? Where are you going through for your transplant, if I may ask? We are working with Mayo.
@jodeej JoDee, I too had liver cancer and was given exception points but not nearly as many as that! I can't remember exactly but it was definitely a mixed blessing. It was good to get more points but if the cancer recurred or there were more malignant lesions than a certain number or they were larger than a particular size that would have knocked me out of being eligible.
So "activated" means you are at a point where you are very close to being called?
@contentandwell from what I understand they have changed how they do the points now. My husband's brother had a liver transplant 31/2 years ago and they scoring was different. Now they give you 21 six months after being put on the transplant list. He will get bumped to 30 in May. Being activated does mean that you can get called, but I have no clue how high we are on the list. It could still be several months. They wouldn't say where we were when I asked earlier. As I'm sure you know, there are a lot of variables that go into the list, so it changes constantly!
Well I started with 18 points and went from there. The Mayo is talking about staging on my next visit in may.
@jerrydrennan I'm guessing that makes a difference, along with your type of cancer. I'm sure you'll find out a lot more in May. Mayo is such an amazing place!
I see from an earlier post that you are also going to Rochester. I hope it's done snowing by the time you go! We have appointments next Tuesday and it's supposed to snow Friday, Sunday and Monday. I'm hoping I can get the hubby to head out on Saturday so we don't have to drive in it. 5-6 hours in snow is not fun!
@contentandwell – we realized this morning after seeing @jerrydrennan's post come through that we never responded to your questions! So very sorry. We took them to Dr. Aqel, hepatologist and medical director of the liver transplant program at Mayo Clinic's campus in Arizona. Here's what he had to say regarding changing MELD scores: MELD changes with changes in the following labs: INR, creatinine, bilirubin, and Sodium. In the absence of lab changes, MELD can be increased if it was granted by the regional review board as MELD exception for a diagnosis of liver cancer for example. In those cases, once the MELD exception is granted, it will be scheduled to increase every 3 months while awaiting for transplant.
I am at Mayo Clinic in Rochester Minnesota