Lung transplantation is a difficult and personal decision. The following general information about lung transplantation is to help guide you in discussions with your CF care team.
When someone with CF develops severe lung disease, the CF care team may discuss the option of lung transplantation with the person. Most CF care teams will begin discussing transplant as an option before it becomes necessary. The doctor can refer the person to a lung transplant center for evaluation.
The transplant center then discusses the overall process of testing and waiting for transplant, as well as the surgery itself and the survival statistics. They will also describe the post-transplant care a person who gets new lungs will have to do to keep them healthy. This requires a lot of responsibility and support. If the person decides he or she wants to be moved forward for a lung transplant, an evaluation is done.
If a person decides he or she wants to be evaluated for a lung transplant, then one can be done. The person’s health is looked at to find out if a lung transplant is necessary and timely. These tests look at how well the lungs, heart and kidneys work, the types of germs in the lungs and, because of the seriousness of transplantation, the person’s psychological well being.
The transplant center also will evaluate the person’s social support system, including family and friends, and whether professional support services may be needed during transplant. Most of the evaluation is standard, but each center can have some specific requirements. The staff’s decision to accept a person for a transplant is specific to that center.
You can learn more about the evaluation process for a lung transplant by watching the CF Education Webcast “Lung Transplantation: The Evaluation Process.”
Almost 1,700 lung transplants were performed in 2011 in the United States; this number has been steadily rising throughout the years. According to the CF Foundation Patient Registry, nearly 2,800 people with CF have received lung transplants since 1990. In the last 5 years, about 150 to 200 people with CF have received lung transplants per year.
While there is still a shortage of available organs, the number of people who die while waiting for transplant has declined dramatically in recent years. This is due to changes in the system of how it is decided who gets an organ. This is called an allocating system. These changes started in 2005 and are described below.
The success of lung transplantation is measured by the average length of survival of the person who got the lungs after the operation. Of people with CF, over 80 percent are alive 1 year after transplantation, and over 50 percent are alive after 5 years. Following surgery, a person may be discharged from the hospital in a few days, week or months, depending on the person’s health and complications.
People with CF generally do well after lung transplantation — often better than people with other lung diseases do.
Transplanted lungs do not have CF because they come from people who do not have CF. However, after the transplant, the person still has CF in the sinuses, pancreas, intestines, sweat glands and reproductive tract.
The new lungs do not “get” CF, but immunosuppressive drugs may decrease the ability to fight germs like Pseudomonas aeruginosa (Pseudomonas) and Burkholderia cepacia complex (B. cepacia). These germs may stay in the upper airways after a transplant and can infect the new lungs. The risks of infection are highest right after the transplant operation. This is because immunosuppressive drugs are given at the highest doses right after the transplant so the body will not reject the new lungs. These drugs make it hard for the body to fight infections, and this can lead to lung infections.
Survival for people with B. cepacia after a transplant is not as good as for those without these bacteria. Most lung transplant centers will not accept people with CF who have B. cepacia. The lung transplant coordinator at the center will know if they will consider a transplant for someone with B. cepacia.
Because CF lungs are infected with germs, people with CF require 2 new lungs. Otherwise, the new lung would get infected by the CF lung. This is called bilateral lung transplant.
The person receiving the new lungs is called the “recipient.” The person donating the lungs is the “donor.” Donors must be a “match” with the recipient. A match is when enough medical and biological information about the donor and recipient are the same (for example, blood type, height, size of the chest).
The better a donor’s lungs are matched with the recipient, the more likely the new lungs won’t be rejected by the recipient’s body.
After a transplant, the immune system protects the body from foreign material, which is anything not belonging in the body, such as germs or transplanted organs. Therefore, the immune system naturally reacts against — or rejects — the foreign organs.
Drugs to stop the immune system from rejecting the organ, called immunosuppressive drugs, must be taken daily for life. These drugs may cause side effects such as diabetes, kidney problems, cancer-like tumors and osteoporosis (thinning of the bones). Research on immunosuppressive drugs shows promise in helping people live longer with lung transplants.
The person receiving the new lungs is called the “recipient.” The person donating the lungs is the “donor.” Donors historically have been either deceased (sometimes called “brain dead”) or living. Living donor transplants require three surgeries: the removal of a right lower lobe from one donor and a left lower lobe from another donor, and the placement of these lobes into the recipient of the lung lobes.
Lung transplants are almost always done from deceased donors. In the past, living-donor lung transplants were considered because the time waiting for transplant was much longer. Because of the new lung allocation score system, there are shorter wait times for the sickest people. Now, living-donor lung transplants are generally considered too risky and are done very rarely.
In 2004, there were 28 living-donor lung transplants performed in the United States, compared with 1,000 deceased-donor transplants. In 2009, only 1 living-donor lung transplant was performed in the United States, with 1,600 deceased-donor transplants.
People choose transplant centers for different reasons, including location and experience in transplanting people with CF. In general, transplant programs require that the person who is waiting live within a few hours of the transplant center, because donor lungs must be transplanted relatively quickly.
Before 2005, a person rose to the top of the transplant list based on time waiting regardless of how sick the person was.
In spring 2005, the United Network of Organ Sharing (UNOS) started a new lung distribution policy to reduce the waiting time for people over age 12. Under this system, people awaiting transplantation are assessed periodically to determine how sick they are and how likely they are to stay healthy after a transplant. The sicker the person is, the closer he or she is to being first to get new lungs when they become available. This allows donor lungs to be given to the person who needs them most at that time.
The system uses a mathematical formula, called a “lung allocation score,” to determine when someone should receive new lungs. The score uses medical information about the person’s health before the transplant, and projected health after the transplant. The medical information for this score includes disease diagnosis (CF or other lung disease), lung function tests, health factors such as diabetes, the use of oxygen or a ventilator to help the person breathe, and other factors. Individuals will be re-evaluated every 6 months and given a score between 0 and 100. Those with a higher score have a better chance of getting lungs sooner.
All transplant centers require the person to get to the center within a certain amount of time, usually within a few hours. This is so the surgery can be done soon so the donor lungs will be the best possible for the transplant. Sometimes, a person must become a legal resident in the state where the transplant center is located. This is often because of the type of insurance coverage the person has, such as state-based Medicaid.
Most health insurance and government programs, including most Medicaid programs, will pay for a lung transplant. However, insurance companies may require the person to get the lung transplant at a certain center. Check with your CF care center team to find out which centers may be good for you and then talk to your insurance company about coverage.
The coordinator or social worker at the lung transplant center may have information on private and public insurance options and on ways to raise funds for the transplant and other expenses. It also is important to learn if there’s insurance coverage for medications needed after transplantation, such as immunosuppressive drugs.
Lung transplantation was first performed in the United States in the early 1980s and has improved over time. At first, lung transplants were done with both the heart and lung. But, as surgical techniques improved, double-lung transplants became possible. In addition, studies show some advances in the use of immunosuppressive drugs for lung transplants. This holds great hope in improving survival even further. Based on progress made in the past 10 to 15 years, survival after transplant will continue to improve.
The CF Foundation is supportive of organ donation and the importance of lung transplantation choice for people with CF. The CF Foundation continues to push for further advances in the transplant field, for research on CF and transplantation, and for policies that help people with CF get lung transplants. It is hoped that the Foundation’s efforts to develop new drugs for CF will reduce the need for lung transplants.
Organ Donation and Transplantation