The Waiting List
Many individuals ask questions about what it means to be "listed" on the transplant list. A national organization, the United Network for Organ Sharing (UNOS), was established for the fair distribution of donor organs. Upon conclusion of the evaluation process and acceptance into the program, the transplant team adds potential lung recipients are to the national UNOS transplant waiting list. Patients are given a Lung Allocation Score that will determine how close they are to transplantation.
| Often, patients wonder what they can do while they wait for transplantation. It is critical that patients come to their medical appointments. These appointments are scheduled regularly so that the team can assess the patient's medical condition. This is needed so that they can update the patient's medical information and keep the patient active on the waiting list. |  |
| Hopkins also offers support and education programs that patients can attend while they are awaiting transplantation. These resources are listed at the end of this page. | Marty, a lung mentor, helps answer transplant related questions at a local fair. |
The Lung Allocation Score
Each patient will receive a "lung allocation score," ranging from 0 (less ill) to 100 (gravely ill). Patients with higher scores will receive priority for transplantation over those with lower scores. The score will be updated every six months based on regularly scheduled testing. The score can also be reassessed by additional testing at any point if a patient’s clinical status changes. Therefore, it is important to come to Johns Hopkins Hospital every three months to evaluate a patient’s status. The lung allocation score is based on the following tests:
- Forced vital capacity - This is a lung function test that measures the maximum amount of air you can breathe out after you breathe in as deeply as possible.
- Pulmonary artery pressure - This is the pressure the heart must generate to pump blood through the lungs. This pressure may be high in some patients with serious lung disease.
- Oxygen at rest - This is the amount of oxygen needed by a patient at rest to maintain adequate oxygen levels in the blood. Patients with severe lung disease may need additional oxygen.
- Age - This is the candidate’s age at the time lungs are offered.
- Body mass index - BMI is a ratio of a patient’s weight to height that, when interpreted with other medical test results, helps to evaluate health status.
- Insulin dependent diabetes - Diabetes may be a predictor of health status in some patients with lung disease.
- Functional status - The New York Heart Association classifications measure effects that lung disease may have on a patient’s function in everyday life.
- Creatinine - Creatinine levels are a measure of kidney function.
- 6-Minute walk distance - In the 6-minute walk test, a patient is asked to walk as far as s/he can in 6 minutes. The distance walked is a measure of functional status.
- Ventilator use - The use of a ventilator to assist breathing may be a measure of disease severity and may affect success after transplant.
- Pulmonary capillary wedge pressure - PCW or "Wedge Pressure" is the pressure blood returning to the heart from the lungs must overcome. This pressure can become increased when the heart is not pumping effectively.
- Diagnosis - Research has shown that urgency among patients needing a transplant and success after transplant vary among patients with different lung diseases due to the specific progression of the particular disease. Therefore, for every patient, diagnosis factors into the calculation of the lung allocation score.
If you have questions or need more information, contact your transplant coordinator or visit the UNOS website to download their patient resource manual "Answers to your Questions about Lung Allocation Policy" at http://www.unos.org/resources/frm_LAS_Calculator.asp.
Support During the Wait
During the waiting period, Hopkins provides a network of support for patients and family members, including a long-running, popular multi-organ education support group and a mentoring program for those who want to connect with someone who has been through the transplant process already. Patients wishing to request a mentor can contact Terri Cook, RN, BSN in the lung transplant coordinators offices at 410-614-4508.
The lung team invites help families, caregivers and friends to a "family orientation" to help them understand the transplant process.
The transplant center also hosts events such as an annual springtime conference, picnic and holiday party so that you might connect with other patients.
Check the transplant calendar to find a list of dates for upcoming events.
