Penn Transplant Institute

Lung Waiting List

If the Penn Lung Transplant Team determines that transplantation is the best option to improve the patient’s health and wellness, and the patient and family agree, the patient's name and select clinical information is registered with the United Network for Organ Sharing (UNOS).

It is important for lung transplant candidates to understand the process by which donated organs are allocated in the U.S. Information is available in the UNOS patient education booklet, Questions and Answers for Transplant Candidates about Lung Allocation Policy.

The Organ Procurement and Transplantation Network (OPTN) is the nation's organ procurement, donation and transplantation system. UNOS is the non-profit organization that operates the OPTN under a contract with the federal government. OPTN and UNOS continuously evaluate new advances and research, and then use this information to improve organ transplantation policies to best serve those people needing a transplant. All transplant programs and organ procurement organizations are OPTN/UNOS members and agree to follow OPTN policies.

Lung Allocation System (LAS)

The lung allocation system assigns an individualized lung allocation score (LAS) to every lung transplant candidate over the age of 12. The lung allocation score is an important factor in determining priority for receiving a lung transplant when a donor lung becomes available. The system determines the order of everyone awaiting a lung transplant by their lung allocation scores, blood type and geographic distance between the candidates and the hospital where the lung donor is located. Age also plays a role because lungs from pediatric and adolescent donors are offered first to pediatric and adolescent transplant candidates before they are offered to adults.

The lung allocation system uses medical information specific to each lung transplant candidate. This information includes lab values, test results, and disease diagnosis and is used to calculate an LAS from 0 to 100. The score represents an estimate of the severity of every candidate’s illness and the chance of success following a lung transplant. All candidates are placed in order for compatible lung offers according to their score: a candidate with a higher lung allocation score receives higher priority for a lung offer when a compatible lung becomes available.

The supply of donor lungs is limited. The OPTN designed this allocation system to more effectively use the limited number of available donor lungs as well as reduce the number of deaths among people waiting for a transplant.

Prior to this system, transplant candidates received donor lungs based on the amount of time they had been on the waitlist. The lung allocation score system is based on scientific data regarding lung transplantation and by drawing on prior experience with many types of patients with lung diseases, and offers donor lungs to candidates according to their medical characteristics.

The following medical information is used to calculate the LAS:

  • Forced vital capacity: The lung function test that measures the maximum amount of air patients can breathe out after breathing in as deeply as possible. This amount may be lower in patients with lung disease.
  • Pulmonary artery pressure: The pressure the heart must generate to pump blood through the lungs. This pressure may be high in some people with serious lung disease.
  • Oxygen at rest: The amount of oxygen needed at rest to maintain adequate oxygen levels in the blood. People with severe lung disease often need additional oxygen.
  • Age: The candidate's age at the time lungs are offered.
  • Body Mass Index (BMI): The ratio of a person’s weight to height that, when interpreted with other medical test results, helps to evaluate health status.
  • Diabetes: May be a predictor of health status in some people with lung disease.
  • Functional status: Measures the effects of lung disease on someone’s ability to perform routine daily tasks.
  • Six-minute walk: Transplant candidates are asked to walk as far as they can in six minutes. The distance walked is a measure of functional status.
  • Assisted ventilation: Using a ventilator to assist breathing may be a measure of disease severity and may affect success after a transplant.
  • Pulmonary capillary wedge pressure: The pressure blood returning to the heart from the lungs must overcome. This pressure can become increased when the heart is not pumping effectively.
  • Serum creatinine levels: A measure of kidney function, high creatinine levels reflect impaired kidney function, sometimes associated with severe lung disease.
  • Diagnosis: Research has shown that urgency among people needing a lung transplant and success following a lung transplant varies among people with different lung diseases. Therefore, for every lung transplant candidate, diagnosis factors into the calculation of the lung allocation score.
  • PC02: The current PC02 and change in PC02 are both considered in the lung allocation score calculation. When the lung's ability to exchange oxygen and C02 becomes impaired, the PC02 level can become increased.

Lung Waiting List

Being "placed on the list" means patients' names and certain medical information are entered into the national database overseen by UNOS. Donor lungs are allocated by UNOS and the regional organ procurement organization, Gift of Life Donor Program. Suitable donors have a compatible blood type and are approximately the same size. Since the list is based on medical urgency, someone’s place on the list may fluctuate with health changes and the addition or removal of other patients on the waiting list. Patients may be listed for transplant in more than one area within a region or multiple regions.

One of the eligibility factors for lung transplant is overall physical health Patients are encouraged to stay healthy while they wait. Until the time of transplant, patients remain under the care of their local pulmonologist.

To express concerns about the lung allocation system, ask questions about national transplant-related data, or file a grievance, patients may contact the UNOS/Organ Transplant Procurement Network (OPTN) patient hotline at:
888-TX-INFO-1.

Patients have the option of pursuing listing at other transplant centers beyond this local area.

What to Do While Waiting

There are many things patients can and should do while waiting for a lung transplant, including:

  • Continue to exercise regularly to promote endurance and speed up recovery after transplant.
  • Follow dietary guidelines.
  • Carry a cell phone when not at home. The Penn Lung Transplant team needs to be able to contact patients on the waiting list at any time.
  • Find ways to manage the stress of waiting and coping with chronic illness in order to maintain a positive outlook.
  • Notify the transplant program when not feeling well, when starting a new medication and within 24 hours if hospitalized.
  • Set up an advanced directive and identify a power of attorney.
  • Set up a support group of family and friends to help post-surgery.
  • Make arrangements for transportation to the hospital for transplant.
  • Pack your bags in advance, including a 24- to 48-hour supply of medication and oxygen if needed.
  • Bring enough oxygen for the round trip.
  • Confirm temporary living arrangements if necessary.
  • Become familiar with post-transplant care.

Lung Donor Becomes Available

When a suitable lung donor becomes available, the on-call nurse coordinator calls the patient, who is told to refrain from eating or drinking and to come directly to the hospital admissions office at the Hospital of the University of Pennsylvania. The admissions office is located on first floor of the Silverstein building.

Upon arrival, the patient is admitted to the hospital room and the transplant team begins preparing for surgery. They complete paperwork, review medications, check vital signs and draw blood. Patients wait in their hospital room with their support team until it is time to go to the operating room.

About Organ Donors

The major reason patients must wait for a lung transplant is the limited number of donor lungs available for transplant. While many strategies have been developed to expand the number of donors, there still are not enough organs for all patients who are waiting. Unfortunately, for a transplant to occur someone must agree to donate their organs after they die.

Advances in transplantation have made it possible expand the donor pool with lungs that in the past may have been determined to be unsuitable for transplant. At the Penn Transplant Institute, an organ is accepted only if it is believed to be of excellent quality and compatibility with the recipient.

The type of donor is based on the definition used to determine death. In short, there are two general categories used to describe those who can donate lungs: brain dead donors and cardiac death donors.

When an organ donor is identified, a group of surgeons are sent to evaluate the lungs. Because of time constraints, patients are called in to come to the hospital before the surgeons have inspected the lungs. If for any reason the lungs are determined to be unsuitable, the surgery is canceled and the patient sent home while retaining their place on the wait list. This sometimes happens in lung transplant team's efforts to provide the best lungs possible for patients.

Accepting a donor organ from another human being has several risks; the most common potential risks are primary non-function, rejection, infection and cancer. All transplant donors are screened very carefully prior to donation to minimize these risks.

On occasion, an appropriate donor may become available whose past history places them at a slightly increased risk for viral infections, such as HIV, or hepatitis B or C. Penn Medicine is required by law to inform patients if a donor becomes available that is considered high risk based on criteria established by the Centers for Disease Control (CDC) for transmission of disease, including:

  • Persons with history of non-medical injections of drugs
  • Persons with clotting factors disorder who received human-derived clotting factor concentration
  • Men who had sex with another man in the last five years
  • Persons who have had sex with any of the above people
  • Person who has been exposed to suspected HIV-infected blood/tissue in the past 12 months
  • Inmates of correctional systems

While these are the risk factors noted by the CDC at this time, excluding these factors does not mean patients are risk free from transmission of disease. All donors are screened prior to donation based on current screening practices. It is unlikely, but possible, that the screening may fail to detect a very early infection and an infection could be transmitted through the transplant.

Prior to transplant surgery, the surgeons use their best medical judgment to decide whether or not to accept and transplant this donor organ(s). This decision is based on the donor’s medical criteria, condition and history at the time of the organ offer. The transplant surgeons balance this information with the real risk that a patient's condition may worsen and the person will become too sick for transplant, or even die.

The final decision to accept a CDC high-risk donor organ rests with the patient. When a transplant from a donor who has been designated as a CDC high-risk donor is accepted, the patient's condition is monitored closely by the transplant team to be sure that no disease transmission has occurred.

In the unlikely event that transmission does occur, the transplant team arranges for appropriate treatment. Patients who decide to refuse the organ do not lose their place on the transplant waiting list. However, the transplant team cannot predict when another organ will become available.