There are some great lung transplant centers for kids in the U.S. Each of them has its own teaching tools, which give more detail about transplants than what’s presented here.
Transplants are not cures. With a transplant you are trading your old health challenges for new ones, at best. After transplantation it is important to take medications, monitor for side effects, and make regular visits to the transplantation center for follow-up. There are many potential complications, such as rejection or infection. For some, the trade is worth it. For others, it is not. In transplants, success is defined by how many people are still living five years after the transplant (“survival”). For adult kidney, liver, and heart transplants, the expected five-year survival is at least 80 percent. In children, the five-year survival rate for lung transplantation at a prominent center was about 50 percent as of 2008. This rate included all diagnoses (not just chILD). For the latest figures, ask your transplant team. Do all you can to preserve lung function for as long as you can. Do not skip daily treatments and medicine!
Transplant centers for kids are changing the way patients are chosen. Not everyone who needs a transplant can get one. Since donor lungs are scarce and transplants risky, all centers must choose the patients who have the best chance of success. Each transplant center has different guidelines to decide who these patients might be. They look at the presence of infection, family support, and how well patients have followed past treatment plans.
If all goes well a lung transplant can lead to a longer and better life. Will your child have a longer and better life after lung transplant? We cannot be sure. Since it is such a major procedure and the outcome is not guaranteed, no one should ever feel forced to get a transplant. It is a choice to discuss with family, friends, and your health team. Learn all you can about transplants before one is needed so that, if the time comes, you can make a wise choice.
If you and your health team decide that you will likely want/need a transplant, you will be referred to a transplant center. The center will review your child’s health record and decide if a transplant is wise. When you visit the transplant center, every part of your life will be assessed … your body, mind, family, finances, etc. You will meet with all transplant team members and they will decide within 2-4 weeks if you qualify for a transplant at that center. If the transplant center is far away, you may have to travel to and live for a time in that city both before and after the transplant. Also, you will need to be seen now and then at that center for years to come.
What Is chILD
Living With chILD
Acute Interstitial Pneumonia
Alveolar Capillary Dysplasia
Neuroendocrine Hyperplasia of Infancy
Pulmonary Interstitial Glycogenosis