FAQ’s for the Transplant Candidate

FAQ’s about the National Transplant Waiting List

What are the OPTN and UNOS?
The Organ Procurement and Transplantation Network (OPTN) links all of the professionals involved in the nation’s organ donation and transplantation system. The OPTN also strives to make more organs available and increase patient access for transplants. The United Network for Organ Sharing (UNOS) is a non-profit organization that operates the OPTN under a contract from the federal government. 

The OPTN and UNOS continuously review new advances and research and use this information to improve organ transplant policies to best serve patients needing transplants. All transplant programs and organ procurement organizations are members of the OPTN and agree to follow its policies.

The United Network for Organ Sharing (UNOS)*  provides a toll-free patient services line to help transplant candidates, recipients and family members understand organ allocation practices and transplantation data.  You may also call this number to discuss a problem you may be experiencing with your transplant center or the transplantation system in general. The toll-free patient services line number is:  1-888-894-6361.   

How am I listed for a transplant?
If you have a condition leading to organ failure, your doctor may recommend you for an organ transplant. To become a transplant candidate, you must be evaluated and accepted by a transplant hospital. It is up to each center to decide whether or not it will accept someone as a transplant candidate.

How am I considered for organs from deceased donors?
You are considered for available organs based on a combination of medical facts entered into a computerized matching program. These factors include blood and tissue type, medical urgency, body size, distance between the donor and transplant hospital and time spent waiting for a transplant. 

 The distance between the donor and transplant hospital is important because the less time the organ must be preserved outside the donor’s body, the better the chance that it will function when transplanted. There are three levels considered:

  • Local. This is usually the area served by the local organ procurement organization (OPO) where the donation occurs. There are 58 OPOs nationwide. These areas are often statewide but can be smaller (such as a large city or part of a state) or larger (a multi-state area). Your transplant center can tell you what your local area is.
  • Region or Zone. If there are no suitable local matches, organs are offered to patients at transplant centers in a wider area. Kidneys, livers, pancreases and intestinal organs are first offered within one of 11 regions of the United States. Heart and lung offers are considered for candidates within 500 miles of the donor site, then 1,000 miles, then 1,500 miles.
  • Nationwide. If there are no matches in the local area or region, organs will be offered to anyone in the United States who is a potential match.

What are the steps for matching organ donors with transplant candidates?

  1. An organ is donated. When the organ becomes available, the OPO managing the donor sends information to UNOS. The OPO procurement team reports medical and genetic information, including organ size, and condition, blood type and tissue type. The organ is accepted or declined. If the organ is not accepted, the OPO continues to offer it for patients at other centers until it is placed.
  2. UNOS generates a list of potential recipients. The UNOS computer generates a list of potential transplant candidates who have medical and biologic profiles compatible with the donor. The computer ranks candidates by this biologic information, as well as clinical characteristics and time spent on the waiting list.
  3. The transplant center is notified of an available organ. Organ placement specialists at the OPO or the UNOS Organ Center contact the centers whose patients appear on the local list.
  4. The transplant team considers the organ for the patient. When the team is offered an organ, it bases its acceptance or refusal of the organ upon established medical criteria, organ condition, candidate condition, staff and patient availability and organ transportation. By policy, the transplant team has only one hour to make its decision.

Who and what is involved in the organ allocation process?

  • The UNOS Organ Center: Staffed with organ placement specialists, the UNOS Organ Center coordinates the efforts of many transplant professionals at the OPO and transplant center with the needs of the patient. It is located in Richmond, Virginia. UNetSM: The secure Internet-based transplant information database created by UNOS for the nation’s organ transplant centers and OPOs to register patients for transplants, match donated organs to transplant candidates, and manage the critical data of all patients. This computer network is accessible 24 hours a day, seven days a week.
  • The Organ Donor: This person has died, is compatible with the recipient and meets certain criteria.
  • The Transplant Candidate: This person needs a new organ because he or she has suffered from end-stage organ disease. A transplant center has also evaluated this patient, determined that he or she is a candidate fo an organ transplant and has added him or her to the national waiting list.
  • The Transplant Recipient: A person who has received an organ transplant.
  • The Procurement Team: This is a group of professionals who work at an organ procurement organization (OPO) or transplant center and coordinate the recovery of the organ. They remove the organs from the donor’s body, so that they can be transplanted.
  • The Transplant Team: These are healthcare personnel who perform the transplant operation. They also take care of the patient before, during and after the transplant operation. 

What is multiple listing?
Multiple listing involves registering at two or more transplant centers in different local areas. Since candidates at centers local to the donor hospital are usually considered ahead of those who are more distant, multiple listing may increase your chances of receiving a local organ offer.

Could multiple listing shorten my waiting time for a transplant?
Some studies suggest multiple listing can shorten the average waiting times of kidney transplant candidates by several months. This does not guarantee that every multiple-listed patient will have a shorter waiting time.

Many factors affect how long you might wait for a transplant. Of course, not enough organs are donated each year to meet everyone’s needs. Everyone in the transplant community shares the goal of increasing organ donation to save and enhance more lives.

Other waiting time factors include how urgent the patient is and how closely the donor and candidate match on body size and blood type. Some kidney and pancreas candidates have a “highly sensitized” immune system because of earlier transplants, pregnancy or multiple blood transfusions. Highly sensitized patients will only be good matches for a limited number of organ offers, so they often wait longer than non-sensitized candidates.

Are there any restrictions?
Under OPTN policy, you can multiple-list as long as you don’t choose two transplant centers in the same local area. It will still be up to the individual center to decide whether to accept you as a candidate.

Some transplant programs may not accept multiple-listed patients. Others may set their own requirements for multiple-listed candidates. If you are considering multiple listing, you should ask the transplant team how they handle such requests.

What is involved in multiple listing?
As with any transplant listing, you must be considered and accepted by a transplant center. This involves completing an evaluation and agreeing to meet any conditions set by the program (for example, ability to come to the hospital within a certain time if you are called for an organ offer).

You might check with your insurance provider to see if they will reimburse the cost of additional evaluations. You should also consider other costs associated with listing that insurance may not cover. For example, you may need to pay for travel and lodging if the center is further from your home. You should also find out whether your post-transplant medical care will be provided at the center or can be transferred to a facility closer to your home. In addition, you would need to maintain current lab results and contact information for each transplant program where you list. Each program will need current information should they receive an organ offer for you. Through the OPTN database your center can know if you are multiple-listed but may not know the other hospital(s) where you are listed.

If I list at more than one center, how is my waiting time considered?
As soon as a center accepts you as a transplant candidate, your “waiting time” begins. Depending on the organ you need, waiting time may be a factor in matching you for an organ offer. Waiting time is a more important factor for certain organ types such as kidney and pancreas. It is less of a factor with heart, liver, and intestinal organs. For these organs more priority is given for factors such as medical urgency.

If you are a lung transplant candidate age 12 or older, waiting time will not be used at all in matching you with organ offers. Lung transplant priority is given for a combination of medical urgency and expected post-transplant survival. Waiting time is a factor for lung transplant candidates age 11 and younger.

The longest amount of time you have waited at any center is called your primary waiting time.If you list at multiple centers, your waiting time at each center will start from the date that center listed you. OPTN policy allows you to transfer your primary waiting time to another center where you are listed, or switch time waited at different programs. (For example, if you have waited 9 months at Center A and 6 months at Center B, you could switch your time to have 6 months at Center A and 9 months at Center B.)

You are not allowed to add up or split your total waiting time among multiple centers. (Again, assume you have waited 9 months at Center A and 6 m o n t h s at Center B. You could not assume you have 15 total months of waiting time and assign 5 months to Center A and 10 months to Center B.)

Any request to transfer or switch waiting time must be approved by the transplant center(s) involved. Most transplant programs require a written request to swap or transfer waiting time, which will then be considered by the transplant team.

If I do not multiple-list but transfer my care to another hospital, what happens?
If you want to end your listing at one program and transfer to another, your primary waiting time can be transferred as long as you coordinate with both programs. The new transplant program will probably ask you to request in writing to transfer the waiting time. Keep in mind that if you end your listing at one program beforeanother program formally accepts you, you may risk losing all previous waiting time.

Sometimes a transplant program may inactivate for a period of time (for example, to replace a key member of the transplant team who leaves) or close its operations. If this happens, the OPTN requires that the program contact you and provide for your continuing care. If the inactivation is short-term you may choose to remain listed until the program becomes active again, but you will not receive organ offers during that time. If the program closes, the staff will work with you to arrange care at another center without loss of your primary waiting time.

Where can I get additional information?
You should first contact the staff of the transplant program where you are listed or want to be listed. They will have the most specific information about how they handle requests for multiple listing and/or waiting time transfer. They will also make any needed arrangements with UNOS.

UNOS maintains a web site, Transplant Living, which contains extensive information for transplant candidates and recipients as well as their family members. The address is www.transplantliving.org.  You may also wish to visit the OPTN web site at www.optn.org

UNOS also maintains a toll-free phone information line for transplant candidates, recipients and family members. The number for Patient Services is 1-888-894-6361.  The UNOS mission is to advance organ availability and transplantation by uniting and supporting its communities for the benefit of patients through education, technology and policy development.
P.O. Box 2484, Richmond, VA 23218 www.unos.org.
                  

                                                                  *Source:  UNOS
                                                                   Talking About Transplantation
                                                                   July 21, 2005

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