Lung transplantation is a surgical option for people with cystic fibrosis who have advanced lung disease. During the operation, diseased lungs are replaced with healthy ones donated from a deceased organ donor.

Median survival for people with CF who have had a transplant has improved. According to the 2019 International Society for Heart and Lung Transplantation Registry report, the median survival for adults transplanted between 1992 and 2017 is 9.9 years. This means that half of individuals transplanted between 1992 and 2017 were alive 9.9 years after transplant.¹

Lung transplantation can extend and improve your quality of life, but it involves an extensive evaluation and dedication to living the lifestyle required to keep your new lungs healthy.

The decision to pursue a lung transplant also requires great commitment from your family and friends who are part of your social support system. This is why knowing what to expect will help you and your loved ones plan ahead to determine if transplant is a treatment option for you.

Download this graphic to help you start a discussion about the lung transplant process with your family and care team.

Lung transplant, a multiphase process:

	Phase 1  Talking about transplant early — discussing transplant before you need to be referred so you can learn, plan, and work on improving your chances for a successful transplant
	Phase 2  Being referred — visiting the transplant team so they get to know you as a person, you learn about them as partners in your care, and what to expect during an evaluation, surgery, and recovery at their center
	Phase 3  Getting evaluated — consulting with the transplant team and having tests done to assess your ability to successfully undergo transplant surgery
	Phase 4  Having your case reviewed — the transplant committee will recommend that you either be listed, have additional tests, live as usual until your lungs get worse, work on your health or social support, or you may not be a candidate for a transplant at their center. At that point, your care team can help you get opinions from other transplant centers
	Phase 5  Ready to be listed — if the transplant team recommends that you be listed for a transplant, they will help you decide when to get on the United Network for Organ Sharing waiting list. The transplant team will help manage your health in coordination with your CF care team while you are waiting for a transplant so you have the best chance for a good recovery from surgery
	Phase 6  Receiving new lungs — during the transplant surgery, the transplant team will remove your diseased lungs and replace them with healthier lungs from a deceased donor, which can take 6–8 hours
	Phase 7  Living with new lungs — keeping your new lungs healthy by meeting with your care teams, exercising, and managing a new care plan that includes medications to prevent rejection and infections, and reducing the risk of germs, including germs from others with CF

How Are Lungs Allocated?

There are more people who need new lungs than there are available donor lungs. So, to determine who gets new lungs and when, people who are on a waiting list to receive new lungs are given a score. Known as a Composite Allocation Score (CAS), this score is based on factors that are specific to each person and their circumstances. The score ranges from 0 to 100. The higher the score a person has, the sooner they may be offered donor lungs.

This new CAS went into effect in the United States on March 9, 2023, replacing the previous lung allocation score (LAS). Learn more about the CAS from the Organ Procurement and Transplantation Network (OPTN). 

According to the Cystic Fibrosis Foundation's Patient Registry for 2022, there were 1,538 people with CF who had received a transplant, including 53 people who reported to have received a lung transplant in 2022. Most lung transplant recipients were age 30 and older. 
 

Where Do Donor Lungs Come From?

Healthy lungs become available when someone dies and has expressed their desire to donate their organs to those in need. If a person dies without letting their families know that they want to donate their organs, their family is not obligated to give doctors permission to donate their lungs.²

This can be a difficult and emotional time. The donor's family will have lost a loved one, and you will be receiving another chance at life. Many transplant recipients want to express their gratitude with the donor's family. However, you will not be allowed to contact the donor's family immediately but may be able to do so after some time has passed, and the donor's family agrees to be contacted. Organ procurement organizations (OPOs) will help facilitate the process of connecting recipients to donor families, so you can contact your local OPO to learn more.

REFERENCES

1. Khush KK, Cherish WS, Chambers DC, et al. The International Thoracic Organ Transplant Registry of the International Society for Heart and Lung Transplantation: Thirty-sixth adult heart transplantation report - 2019; focus theme: Donor and recipient size match. J. Heart Lung Transplant. 2019 Oct;38(10):1056-1066. doi: 10.1016/j.healun.2019.08.004. Epub 2019 Aug 10.
2. Lung Transplant: Glossary of Terms