If you are eligible for a lung transplant and decide to move ahead with the process, the Penn Medicine Lung Transplant Program places you on a lung waiting list with the United Network for Organ Sharing (UNOS). Our team is here to support you and your family as you wait for your new lungs.
How Do You Get on the Lung Transplant List?
The lung waiting list is a database of medical information for every person waiting for an organ transplant in the United States and Puerto Rico. When a donor organ becomes available, information about the organ goes into the database. A computer system generates a list of candidates who might be a good match.
Factors determining your position on the list of potential candidates include:
- Your lung allocation score, which represents the severity of your condition
- Blood type
- Distance from donor hospital to recipient hospital
Unfortunately, there is no way to know how long you will be on the waiting list. You may wait days, months or years.
You have the right to be on lung transplant lists at different centers in different regions of the country. If you are interested in pursuing this option, please tell your transplant nurse coordinator.
Waiting for a Lung: The Penn Medicine Difference
The lung waiting list for lung transplant surgery is always changing, and so is your place on it. There’s no way to know how long you will be on the waiting list. Our team has extensive experience working with patients and families who are waiting for lung transplants. We’re by your side with:
- Careful monitoring: You’re under our constant care while you wait for a lung. Our team stays up to date on your health because any changes can affect your position on the waiting list.
- Pulmonary rehabilitation: We help you increase your fitness so your body recovers after surgery and is more likely to accept the new lung.
- Support from peers: No one knows what waiting for a transplant is like better than other patients. We host a series of welcoming and encouraging support groups where transplant patients and caregivers can connect and find support. Find a lung transplant support group.
- Advanced therapies: We are leaders in innovations to help more people get lung transplants. Ex vivo lung perfusion is a procedure that increases the pool of donor lungs and reduces time on the waiting list. Extracorporeal membrane oxygenation (ECMO) helps the heart and lungs rest and recover while you’re waiting for a transplant.
While You Are Waiting for a Lung
While the time you wait for a donor lung is out of your control, you can do many things while you wait to help you be ready when a lung is available. Our team supports you through these steps, which include:
Keeping in Touch
Staying in touch and keeping us informed about your health and availability are key to making sure you are ready when a lung becomes available. We expect you to:
- Notify your Penn team about health and life circumstances, including any time you are in the hospital or have changes in your medications. Health changes can affect your lung allocation score and position on the lung waiting list.
- Have a mobile telephone with you at all times so we can reach you when a lung becomes available. Notify us in advance if you are ever unavailable or unable to come to the hospital for a transplant.
Pursuing Health and Mental Wellness
The time you spend on the lung waiting list is a good time to focus on wellness and get ready for transplant surgery. The Penn lung transplant team is here to help you:
- Continue to exercise regularly to promote endurance and speed up recovery after transplant.
- Follow dietary guidelines.
- Seek outlets for managing the stresses of waiting and coping with chronic illness. Our support groups for transplant patients and caregivers are welcoming places of encouragement and hope.
Preparing for the Call that a Donor Lung is Available
When you get the call that a donor lung is available, you will need to get to the hospital right away. Preparation in advance can make all the difference. During your time on the waiting list, we work with you to make sure you’ll be ready. While you’re waiting, we advise you to:
- 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.
- Establish an advanced directive and identify a power of attorney.
Making Arrangements for Life After Surgery
After you leave the hospital with your new lungs, you’ll need to stay nearby for check-ups and therapy. You will also need caregiver assistance. To ease your transition, we recommend you prepare now to:
Ex Vivo Lung Perfusion (EVLP) and Extracorporeal Membrane Oxygenation (ECMO)
Penn has extensive experience in advanced therapies to help make more donor lungs available for transplant and support patients while they wait for a lung, including:
- Ex vivo lung perfusion (EVLP): Not all donor lungs are suitable for transplantation right away. Penn is a pioneer in ex vivo lung perfusion, a state-of-the-art therapy to increase the number of usable lungs and decrease waiting time. Nutrients and oxygen are infused into donor lungs outside the body, improving their quality and making them safe for transplantation.
- Extracorporeal membrane oxygenation (ECMO) bridging: If your lung disease progresses to the point that your lungs can no longer process oxygen, an ECMO bridge may help until a donor lung becomes available. Penn has performed many of these advanced bridging procedures in which an external machine removes, oxygenates and replaces your blood. Learn more about ECMO.
Request an Appointment About Your Lung Transplant List Placement
Call 215-662-6200 to speak to one of our lung transplant experts about your placement on the lung transplant waiting list and what to expect moving forward. You can also request an appointment using our online form.