Preparing for Lung Transplantation
While adult lung transplants are performed due to a variety of lung diseases, pediatric lung transplants are most commonly performed for cystic fibrosis (inherited disorder that damages the lungs and digestive system) and pulmonary vascular disease (any condition that affects the blood vessels along the route between the heart and lungs).
Read our page on end-stage lung disease for more information on these diseases.
Once your child has been evaluated by his or her pediatric lung specialist and has been recommended for a lung transplant, you will need to meet with a transplant team that will perform an evaluation to determine if transplant will be a safe and effective treatment for your child.
The transplant team will consist of a cardiothoracic surgeon, pulmonologist, nurses, social worker, and others, who all specialize in lung transplantation. Your child’s evaluation likely will include:
- A physical examination
- Chest CT scan
- Blood tests to evaluate liver and kidney function, previous exposure to viruses, and blood typing
- Tests to check heart and lung pressure and function including a cardiac catheterization and an echocardiogram
- Pulmonary function testing
- Additional tests to check for other medical conditions or congenital heart defects
- Tissue typing (helps doctors know which donor lungs will match best and reduces the possibility of organ rejection)
Once the transplant team has finished its evaluation and your child has been accepted as a transplant candidate, he or she will be placed on a nationwide transplant waiting list. The amount of time spent on the waiting list varies and does not necessarily determine how quickly your child will get a new lung. Pediatric patients often spend a month to more than a year on the waiting list before a new lung becomes available.
While your child is on the list, you and your child must be available at all times if a lung becomes available. When you are notified that a donor lung is available, you and your child will be expected to travel immediately to the transplant hospital. If your child develops a fever, infections, or needs to be admitted to the hospital, you should contact your transplant coordinator immediately since they may need to place your child’s waitlist status on hold until they have recovered from their illness.
Not all patients who undergo evaluation are accepted as a transplant candidate. If you are told that your child is ineligible for a lung transplant, speak with your doctor about other treatment options that may be available.
Similar to an adult transplant, a single lung transplant usually takes 4 to 8 hours, while a double lung transplant can take anywhere from 6 to 12 hours to complete. More often than not, children will undergo a double lung transplant because of the nature of the lung diseases that affect pediatric patients.
During the procedure, a cardiothoracic surgeon who specializes in transplantation will remove your child’s diseased lung or lungs through an incision made in the chest. Once the diseased lung is removed, the surgeon will place the new lung inside your child’s chest and connect the main airway to that lung and the blood vessels (pulmonary artery and vein) between the lung and the heart.
If your child is undergoing a double lung transplant, the surgeon will transplant one lung completely before transplanting the second.
Your child will be placed under general anesthesia during the procedure and may also be placed on a heart-lung bypass machine (sometimes called “the pump”) during the operation. The machine temporarily takes over the function of your heart and lungs during surgery to maintain blood circulation and oxygen flow through your body. After the surgery is completed, your child will be taken off the pump and his or her heart and lungs will resume normal function.
Once the surgeon feels that both the heart and lungs are functioning on their own, your child’s operation will be completed, and he or she will be taken out of the operating room to start recovery.
Sometimes, children with congenital heart disease develop pulmonary hypertension (high blood pressure that affects arteries in the lungs and heart) and require a lung transplant.
Children with severe liver and lung disease also may be candidates for combined lung-liver transplantations.
Immediately following the operation, your child will be taken to the intensive care unit (ICU) where he or she will be monitored closely by nurses. You should expect your child to remain in the ICU for at least 24-48 hours following surgery.
Once the medical staff is certain that the new lungs are functioning well and your child’s risk for infection has reduced, he or she will be transferred to a regular unit to continue recovery before being able to leave the hospital. You should expect your child to remain in the hospital for an additional 11-14 days following surgery.
Your child will require lifelong follow-up to ensure the transplanted lungs continue working properly, and they are not rejected by his or her immune system. Your child may require additional testing including chest CT scans and bronchoscopy if there is suspicion for rejection. You should speak with your child’s surgeon and pulmonologist (lung specialist) to ensure that you understand what to expect in the months and years following transplantation.
If you live out of state or traveled more than 3-4 hours to the transplant hospital, your transplant team may ask you to stay close to the hospital for the first 3 months after you are discharged so they can better monitor your recovery.
After the initial 3 month period, if there are no problems or complications, you will be allowed to return home and continue your child’s care with their doctor.
Your child also will have to take immunosuppressive medications (sometimes called antirejection medications) for the rest of his or her life. These medications help your child’s body accept the new lung and reduce the risk of transplant rejection. There can be side effects from these medications, however, so be sure to schedule regular checkups with your child’s doctor so they can monitor all of your child’s medication levels.
Most children will require physical therapy 2-3 days weekly in the first few months after transplantation, which will begin while they are still being treated at the transplant hospital.
Once your child has completed all necessary follow-up and has been cleared to return home, it will be important to continue introducing light exercise and keeping them active to keep building up their entire cardiovascular system.
As your child ages and reaches young adulthood, he or she will be referred to an adult lung transplant specialist to continue treatment. Be sure to speak with his or her pediatric specialist to ensure you understand how your child’s care will continue throughout life.
Reviewed by: Robbin G. Cohen, MD
Previously reviewed by Jules Lin, MD