We understand that you may have a lot of questions when your child may need a lung transplant.
- How does it work?
- How long will my child need to be hospitalized?
- How will it affect my child long term?
- What do we do next?
We’ve tried to provide some answers to those questions in the following pages, and when you meet with our experts, we can explain your child’s condition fully.
Who gets lung transplants?
Diseases and conditions that end in a lung transplant often differ between children and adults. Among adults, many conditions that lead to lung transplants include chronic obstructive pulmonary diseases, such as emphysema. For children, teens and young adults, the most common condition is cystic fibrosis. Other conditions include:
- pulmonic vascular congenital heart diseases
- chronic lung disease of infancy (CLD)
- pulmonary hypertension
- heart disease or heart defects affecting the lungs
- pulmonary fibrosis
A transplant can offer your child a longer and healthier life, but the procedure, like any surgery, does carry its own risks. Understanding these risks will help you to recognize signs early, which can lead to more effective treatment for your child.
What is rejection?
Rejection is a normal - and, under most circumstances, healthy - reaction of the body’s immune system to a foreign object. When new lungs are placed in your child's body, his immune system attacks it, not recognizing that it is useful. To prevent this, your child will have to take life-long medications to weaken his immune system.
How can I tell if my child is having rejection?
It’s not always easy – many children have rejection without any symptoms at all. Your child’s transplant team will watch for these signs and show you what to look for. Some of the most common signs include:
- decrease in lung function
- shortness of breath
- flu-like aches
If your child has any of these symptoms, you should call his doctor immediately.
What medications are used to prevent rejection?
Your child’s transplant pharmacologist will work closely with the rest of the transplant team to determine the best medications for your child. Some of the most common ones are:
- mycophenolate mofetil
Anti-rejection medications work by suppressing the immune system, but that means that your child will be at higher risk for infections. Our team will continually monitor his health through blood tests and other exams.
What infections will my child be susceptible to?
Some of the infections your child may be especially susceptible to include:
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.
Teens and transplants
Being a teenager can be tough enough without having to cope with everything that comes with being a transplant patient. Along with the physical changes, teens also experience cognitive and emotional changes that influence their thoughts and behaviors, sometimes in unpredictable ways. Learn about the special challenges your teen may face as a transplant patient – and discover some ways you can help.
What’s the long-term outlook for my child?
We cannot say for sure, because each child is different. According to the National Heart, Lung and Blood Institute (NHLBI), part of the National Institutes of Health (NIH), short-term survival from lung transplant has improved. Figures from 2005 on single-lung transplant show that more than 82% of patients survive the first year, nearly 60% survive 3 years, and more than 43% survive 5 years. Survival rates for double-lung transplants are similar.
Finding a donor organ for your child
Where do transplanted organs come from?
Most transplanted lungs come from deceased organ donors. These are adults or children who have become critically ill (often due to accidental injury). A donor may come from any part of the United States.
Who distributes the donor organs?
The United Network for Organ Sharing (UNOS) is responsible for transplant organ distribution in the United States. They oversee the distribution of most types of solid organ transplants – in addition to lungs, they also allocate livers, kidneys, pancreas, hearts and corneas.
How are donor organs distributed?
UNOS keeps a list of all the people in the United States who need a solid organ transplant. In the case of lung transplants, people over age 12 are given an allocation score based on how urgently they need a transplant and the severity of their condition.
Those who would benefit most are placed highest on the list, and given first priority when a donor organ becomes available. For children under age 12, lungs are allocated based only on the time they’ve spent on the waiting list.
When donor lungs becomes available:
- A computer searches all the people on the waiting list and creates a smaller list of people for whom the lungs would be the appropriate size and blood type.
- The computer ranks the people on that smaller list according to their allocation scores.
- The person at the top is considered first for the transplant. If he is not a good candidate, the next person on the list is considered, and so forth.
When the decision is made to put your child on the transplant list, his transplant team will send his medical profile to UNOS, and keep them updated them as his condition changes.
How long is the wait?
We know it’s agonizing to wait for donor lungs, but unfortunately, there’s no definite answer to this question. It can be hard to find the right-sized lungs for smaller children. Depending on your child’s age, lung allocation score and how many lungs are available, it may take between a month to more than two years. You will be given a beeper for us to be able to reach you at all times.
What happens while we wait?
We recommend that you use your waiting time to prepare for your child's surgery. A donor lung can become available at any time, day or night, and it is crucial to plan ahead for when this occurs. Here are some things to keep in mind:
- It’s important that you always leave a number where you can be reached if you’re away from home. Make sure the transplant team knows how to reach you at all times.
- When a lung becomes available, you will be expected to arrive at the hospital within two to three hours. Keep your packed hospital bag handy — including an extra 24-hour supply of your medications — and arrange transportation to the transplant center in advance.
- If you’re organizing your own transportation on the day of surgery, consider the possibility of inclement weather, distance and rush-hour traffic.
- Depending on how far you live from Children’s, you may need to relocate to be closer to the hospital if you cannot get to the hospital within two to three hours of our call.
Plan well in advance for other factors including:
- baby-sitting/child care for your other children
- an alternative transportation plan in case the person driving you is unavailable
- phone calls to family members - we suggest you call one family member so they in turn can contact other family members.
- packing a bag for the hospital stay. This may include: toiletries, pajamas, personal items (pictures, favorite blanket, stuffed animal).
Waiting for an available donor lung is often the most difficult and stressful time for our patients and their families. Please remember that we are always here to offer you support and resources should you need it.
How will I be notified when a donor organ is available?
When a donor organ that seems to be a good match for your child becomes available, we will notify you by phone or pager. You’ll be asked to come to the hospital immediately.
When you receive the call to come to the hospital, be prepared to:
- ask about any medications your child should take before coming to the hospital
- let us know if your child has a temperature or is currently sick
- not allow your child to eat or drink anything after receiving the call
- leave your house as soon as possible
Keep in mind that it is possible that you may be sent home again if one or both of the following things occur:
- The team discovers a problem with the new lungs.
- The team finds that your child has a condition that could jeopardize his health or the transplant’s chance of success.
Q: Will my child be able to return to school after the transplant?
A: Many of our children do quite well and are able to return to school after transplant. While precautions need to be taken, we encourage them to lead full and happy lives – to go to school, play sports, spend time with friends and enjoy hobbies.
Q: How long will it take to get a new lung?
A: Unfortunately, there’s no way to know. This may depend on the severity of your child’s condition, how long he has been on the waiting list, and the availability of organs. We know it’s hard to wait, and can direct you to resources and community support groups.
Q: What will happen after the transplant?
A: Your child will take medication to prevent the new lungs from being rejected for the rest of his life. We’ll also have follow-up appointments here at Children’s, so we can monitor his health, change medications if needed and stay in touch with your family. Since your child’s immune system will be compromised, your family may need to make some adjustments to protect his health. Read more about how to help keep your child safe.
Questions to ask your doctor
You and your family are key players in your child’s medical care. It’s important that you share your observations and ideas with your child’s transplant team and that you understand their recommendations.
You probably already have some ideas and questions on your mind, but it can be easy to forget the questions you wanted to ask when you’re talking to your child’s doctor. It’s often helpful to jot them down ahead of time so to make sure that all of your concerns have been addressed.
If your child is old enough, you may want to suggest that she write down what she wants to ask her health care provider, too.
Here are some questions to get you started:
Is a transplant the best option for my child? What other treatments might be available?
How many of this kind of transplants have been done at this institution and by my child’s surgeon?
Are there factors other than my child’s health that go into the decision of whether to move forward with the transplant?
- Will our health insurance cover a transplant? What questions about finance will I need to have answered?
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Designed by Children’s psychiatrist-in-chief David DeMaso, MD
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