Getting Listed for Transplant

Jul 25, 2017 | Mayo Clinic Transplant Staff | @mayoclinictransplantstaff | Comments (34)

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!

2017-07-07 Getting Listed

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?

HELPFUL LINKS

Interested in more newsfeed posts like this? Go to the Transplant blog.

@jodeej

@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.
JoDee

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We are from south Texas
My wife and I were up at mayo in a snow storm in March. Not fun for us at all.

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@jodeej

@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.
JoDee

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@jerrydrennan we are from southwest Iowa and that doesn't sound fun. We were there in January with below zero wind chills. It was terrible, but we did find a way to walk from the Gift of Life House to the clinic and only have to be outside for 1-2 blocks! We haven't had to use the shuttle yet and are trying not too. We may use it this time if he has his chemo at St. Mary's. I hate having to pay for parking.

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@jodeej

@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.
JoDee

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I was at the Mayo clinic in January 2 for test and procedures. I go every 10 weeks and it was cold that week. We stay at econolodge down south Broadway and I ride the shuttle service. Temp was -10 w/c -30 . That's stupid cold for us South Texas boy's.

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@jodeej

@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.
JoDee

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@jerrydrennan that is stupid cold no matter where you are from! Next time you are up you should check out Gift of Life House. It's a lot less expensive than a hotel and there is a kitchen you can use for cooking. GOL is only for people who need or have gotten a transplant. I highly recommend it!

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@jodeej

@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.
JoDee

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I have been there very nice. We are not eligible to stay there. We stay at the economy lodge that far to save money staying down town is costly. I do like that they have a good shuttle service program and runs during bad weather. San Antonio would be shut down for a week or longer.

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@jodeej

@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.
JoDee

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When we drive to the Mayo we go thru Iowa on 35 and stay in anaky out side of Des Moines.

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@jodeej

@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!
J

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@jodeej I didn't realize they had changed how they do the points. It seems to me that there are still many people with fluctuating MELDs who are not yet up close to transplant.
He will go from 21 to 30? That will certainly put him close to transplant I assume, depending on where you are.
JK

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@jerrydrennan I know that area! Our daughter lives in the Urbandale / Grimes area. We try to avoid driving through there because of the traffic. We take highway 169 up to highway 30 or 20 and go east. Then we will hop on I-35 there to go north to I-90.

If you are on the transplant list for a liver, you qualify to stay at GOL. Maybe give them a call to see? Otherwise I think there is a place called Hope House that is for cancer patients.

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@jodeej

@jerrydrennan I know that area! Our daughter lives in the Urbandale / Grimes area. We try to avoid driving through there because of the traffic. We take highway 169 up to highway 30 or 20 and go east. Then we will hop on I-35 there to go north to I-90.

If you are on the transplant list for a liver, you qualify to stay at GOL. Maybe give them a call to see? Otherwise I think there is a place called Hope House that is for cancer patients.

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I will check that route before my next trip in may. The problem is not me it's I am my wife's care giver she has disabilities. GOL will not let here stay there. So it's hard to stay apart. She has only missed 1 trip and I heard about it the whole time I was at rochester. It's the only time we have been a part since here strokes. But thanks for the info. She told me she is going this may with me.

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@jodeej

@jerrydrennan I know that area! Our daughter lives in the Urbandale / Grimes area. We try to avoid driving through there because of the traffic. We take highway 169 up to highway 30 or 20 and go east. Then we will hop on I-35 there to go north to I-90.

If you are on the transplant list for a liver, you qualify to stay at GOL. Maybe give them a call to see? Otherwise I think there is a place called Hope House that is for cancer patients.

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@jerrydrennan that makes sense. Since you are the patient, you can't be the caregiver.

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