One of the first things you’ll want to do is to select a transplant center. There are multiple factors important in selecting a transplant center. These factors include outcomes, geographical location and insurance coverage. You can review outcomes at different transplant centers at SRTR.org. 

You will be spending several months in the city of your transplant center, while awaiting transplant, and then again in the post-transplant period. Many centers require your child stay local to their transplant center for a few months after transplant for close monitoring because that’s when your child is the most vulnerable to complications. You will then be visiting your transplant center several times per year for evaluation and testing to make sure the transplant lungs are still doing well. 

When you choose a center, make sure your insurance will be accepted there. Since there are few pediatric lung transplant centers, many centers will work with your insurance for special approval agreements before bringing your child for evaluation.  

Getting ready for your transplant 

• Infection prevention. Before transplant, it is important to keep your child healthy to avoid illnesses that may prevent them from going to the operating room when suitable organs are available. 
• Participate in rehabilitation. Depending on your child’s needs, the team will refer him/her to physical, occupational, and/or speech therapy to help them improve their health status and optimize their condition prior to transplant surgery, 
• Visit the clinic. While listed, your child will be seen regularly in clinic to ensure stability and provide further education about transplant. 

Medications and transplant rejection 

Your child will be on several critical medications after transplant. They will need anti-rejection medicine, medications to prevent infection, blood pressure medication and other vitamins and supplements.  

Several of these medications must be given at the same times each day and require lab monitoring to ensure levels are in the correct range to be effective, while also minimizing risk of side effects.  

All new medications and vitamins/supplements should be run through your transplant team to ensure there are no interactions with your child’s transplant medications. 

Your family will also be educated on certain foods to avoid after transplant as some ingredients can interact with important transplant medications. 

After your lung transplant 

After transplant, your child will be on medicine to prevent their immune system from rejecting their donor organs which will also make your child more susceptible to infection. Vaccinations for your child and family will be extremely important as well as limiting exposures by good hygiene practices and environmental awareness. Of note, transplant recipients must not receive live vaccines after transplant. 

Your transplant team will also educate you about important things to avoid after transplant to limit infection risk. This can include certain environments, some animals and also certain foods. 

Open communication with your child’s school about their medical condition is encouraged. This allows for understanding when your child is out for medical appointments or other conditions related to their lung transplant. It’s also helpful for the school to keep your family well informed about illness outbreaks, when it may be in your child’s best interest to stay out of school.  

The goal of lung transplant is to live a near normal life. Although, there may be certain restrictions or extra precautions, lung transplant recipients are typically encouraged to participate in school/work, sports, travel and other hobbies.