Lung Transplantation | Listing & Waiting

Once the evaluation is complete, the transplant team will meet with you to review the information and inform you of the results. Generally, there are three possible recommendations:

  • The evaluation has identified factors that make a lung transplant contraindicated or not possible.
  • The evaluation has identified that there are other treatments or medications available that should be considered prior to pursuing a lung transplant.
  • The evaluation has identified that a lung transplant is a treatment option.

In all of these situations, the lung transplant team will work with your family to develop a coordinated care plan. If a lung transplant is offered by the team, it is your decision to pursue lung transplantation, and you will be fully supported by the lung transplant team. We’ll make sure your family is fully educated about the risks and benefits of lung transplantation.

Listing for lung transplant

If you and the transplant team are both in agreement that transplantation is the best option, your child will be listed with the United Network of Organ Sharing (UNOS). UNOS, in conjunction with the New England Donor Services (NEDS), has established certain criteria for matching donors with recipients. UNOS manages the national database and matches the donors to recipients using a Lung Allocation Score that is based on blood type, height, chest size, length of time on the waitlist and degree of illness.

Once your child has been listed for transplant, the lung transplant coordinator will contact you to discuss making a plan for the time of the transplant. Planning how you will get to the hospital has to be well thought out in advance.

Most often, it is the waiting time that is the most difficult and stressful for our patients. Unfortunately, there is no set time period before you get the call for new lungs; therefore, the length of time waiting could potentially be months to years.

The goal during listing and waiting is to preserve your child’s current lung function and to ensure the best quality of life possible. We will work closely with you and your child during the waiting time. Your child will have frequent visits to the hospital for periodic check-ups, including physical examinations, pulmonary function tests and blood work.

The lung transplant team is here to support you and your child during this waiting period. Our social worker, child life specialist and child psychiatrist or psychologist are also available and will check in with your family as needed.