Lung Transplant | Listing & Waiting
Once the evaluation is complete, the transplant team will meet with you to review the information and inform you of the results. Generally, there are three possible recommendations:
- The evaluation has identified factors that make a lung transplant contraindicated or not possible.
- The evaluation has identified that there are other treatments or medications available that should be considered prior to pursuing a lung transplant.
- The evaluation has identified that a lung transplant is a treatment option.
In all of these situations, the lung transplant team will work with your family to develop a coordinated care plan. If a lung transplant is offered by the team, it is your decision to pursue lung transplantation, and you will be fully supported by the lung transplant team. We’ll make sure your family is fully educated about the risks and benefits of lung transplantation.
Listing for lung transplant
If you and the transplant team are both in agreement that transplantation is the best option, your child will be listed with the United Network of Organ Sharing (UNOS). UNOS, in conjunction with the New England Donor Services (NEDS), has established certain criteria for matching donors with recipients. UNOS manages the national database and matches the donors to recipients using a Lung Allocation Score that is based on blood type, height, chest size, length of time on the waitlist, and degree of illness.
Once your child has been listed for transplant, the lung transplant coordinator will contact you to discuss making a plan for the time of the transplant. Planning how you will get to the hospital has to be well thought out in advance.
Most often, it is the waiting time that is the most difficult and stressful for our patients. Unfortunately, there is no set time period before you get the call for new lungs; therefore, the length of time waiting could potentially be months to years.
The goal during listing and waiting is to preserve your child’s current lung function and to ensure the best quality of life possible. We will work closely with you and your child during the waiting time. Your child will have frequent visits to the hospital for periodic check-ups, including physical examinations, pulmonary function tests, and blood work.
The lung transplant team is here to support you and your child during this waiting period. Our social worker, child life specialist, and child psychiatrist or psychologist are also available and will check in with your family as needed.
Lung Transplant | Surgery & Hospital Stay
Lung transplant surgery
When an organ does become available, time is of the essence, so it is important to be at the hospital within four hours of getting the initial call. When you arrive at Boston Children’s Hospital, you will go to the Solid Organ Transplant Floor or the intensive care unit (ICU).
The doctors and nurses will examine your child, obtain certain specimens, take a chest radiograph, and draw some blood. This is to make sure your child is ready to go to the operating room. If your child has an upper respiratory infection or a temperature, the transplant team will then determine whether or not it is safe to go ahead with the operation.
You will meet and discuss the upcoming surgery with the surgeon and anesthesiologist. This is a good opportunity to go over any questions or concerns you might have and sign consent forms.
While the preparation for surgery takes place, a surgical team is leaving Boston Children’s Hospital to obtain the donor lungs. The time of the operation is planned to match the team’s arrival back to Boston Children’s.
Lungs need to be transplanted soon after being outside of the body. Timing is crucial in order to remove the lungs, transport them back to our hospital, and get them transplanted within that time frame.
The surgery can take anywhere from six to eight hours. While your child is in surgery, your family will be given progress reports every few hours.
Possible complications after lung transplant
Rejection
Rejection is a normal reaction of the body to a foreign object. The immune system is responsible for the body’s defense against infection and foreign tissue (the transplanted organ). Because a lung transplant is viewed by the body’s immune system as foreign, the body mounts an attack against the transplanted lungs by sending cells from the immune system to destroy the new lungs. This attack is called rejection.
To minimize the chance of rejection, we start immunosuppressive medications during the transplant surgery. These medications work to inhibit the immune system and prevent rejection of the new lungs. Since these drugs inhibit or decrease immune response, it can put your child at risk for infection that is caused by bacteria, viruses, and fungi.
The more common immunosuppressive medications are prednisone, Cellcept, and Prograf. The first year after your transplant is often when we are working to establish the best combination of anti-rejection medications. The immunosuppressive medications are taken at the same time every day, and your child will need to take them for the rest of their life.
After transplant, we periodically test for rejection. This is typically done during a bronchoscopy by taking a very small piece of the new lungs and looking at the cells under a microscope, called a lung biopsy. If there are any signs of rejection, we will develop a plan to treat the rejection.
Infection
The immunosuppressive medications that prevent rejection of your child’s new lungs cause your child to be more susceptible to infection. Some of the infections your child may be especially susceptible to include:
- oral yeast infections (thrush)
- viral infections such as cytomegalovirus, Epstein-Barr virus, herpes
- respiratory viruses
- bacterial infections
This risk of infections is especially high during the first few months after the transplant. This is because higher doses of anti-rejection medicines are given, so the immune system is especially suppressed.
Hospital stay after lung transplant
After surgery, you will remain in the intensive care unit (ICU) for several days. As your condition improves, you will be transferred to the solid organ transplant floor, where your recovery will continue. The lung transplant team along with the nurses on the floor will teach your child and family about the medication schedule, monitoring for side effects, and complications related to the transplant. We will tailor the information and develop a plan that suits your child’s individual needs. We encourage the extended family to be involved in learning about your child’s care when you go home.
Going home after lung transplant
Once discharged from the hospital, you and your family will be responsible for looking after your child’s health and contacting your transplant team if any problems should arise.
Oftentimes, we arrange for a visiting nurse to come to your home to assess your child’s progress and monitor for any changes when you are initially discharged after the lung transplant.
Medications
The goal after transplant is to use the lowest dose of medication possible to prevent rejection and minimize side effects. Using drugs in combination allows us to use smaller doses for each drug than if only one drug is used. We generally use a combination of drugs to suppress your child’s immune response. Taking the medications prescribed in the right amount and at the right time every day is essential to good health after transplant.
Your child will be given a medication schedule before leaving the hospital and during clinic visits. Changes are made to medication doses frequently by the transplant team.
Just like the nurses and pharmacists work with patient and families to understand meds, the nurse and dietitian will work with families to understand nutrition needs and restrictions.
Lung Transplant | Long-Term Outlook
What is the long-term outlook following a lung transplant?
Lung transplants are becoming increasingly successful as researchers learn more about how the body deals with transplanted organs and search for ways to improve children’s quality of life both before and after transplant.
A lung transplant is a life-long journey. Your child will not only take medication to prevent the new lungs from being rejected for the rest of their life, but will also have routine follow-up appointments to monitor health and adjust medications as needed. Medication adherence is critical to minimize the development of rejection.
Growth and development following lung transplant
Following transplant, most children will develop and grow both physically and cognitively, just like kids their own age. They’ll be able to return to school three to six months post-transplant. While precautions need to be taken, they can still play sports and spend time with friends.
In general, the goal of a lung transplant is to improve your child’s overall quality of life. Our hope is that it will allow them to feel well and do the activities they enjoy.
