What to Expect

What to expect during the lung or combined heart-lung transplant evaluation process

When your child comes to us for a lung or combined heart-lung transplant evaluation, they will undergo a comprehensive examination. You can expect:

• A multidisciplinary assessment to determine the extent and severity of your child’s lung disease and, when applicable, heart disease. It’s always best to evaluate your child before they are extremely ill. However, sometimes scenarios occur when transplantation is urgently needed. Please know, we consider evaluation requests at any time.
• During the weeklong evaluation, usually as an outpatient, your family will receive extensive information about the evaluation process, possible risks and benefits of undergoing transplantation, and what life after transplantation could look like.
• Throughout the week, your child will complete extensive laboratory work, along with necessary diagnostic tests, such as pulmonary function tests, an echocardiogram, a CT scan, and other testing as needed. We may also recommend a minimally invasive cardiac catheterization procedure to better understand the function of your child’s heart and lungs.
• Once we have a good picture of your child’s health, our team of specialists works together to determine the right treatment for your child. We explore all medical, interventional, and surgical options and welcome your input and questions.
• When your child’s transplant evaluation is complete, our team provides a tailored plan, with our recommendations for current and future treatment and whether your child is a candidate for being added to the national transplant waiting list, which is managed by the Organ Procurement and Transplantation Network (OPTN).

What to expect while on the transplant waiting list

• When we place your child on the transplant waiting list, your family will receive ongoing support from our transplant coordinators, transplant social workers, transplant psychologist, and entire multidisciplinary team. We are committed to supporting you and your child through the entire transplant journey.
• The waiting time varies for transplant due to the organ-matching process managed by the OPTN.
• Children who are very sick may need to remain in the hospital while they are waiting for transplant.
• Some of our patients living outside of the hospital while on the transplant waiting list need to remain close to our hospital while they are on the waiting list. Our transplant social workers, transplant coordinators, and financial assistance team can assist you with logistics and resources, including helping you identify lodging or housing options.
• Your child’s transplant doctors will call you when well-matched, donated organs become available. We know waiting for a transplant for your child can feel like your life has been put on hold. Our transplant team will do all we can to support you in this journey and help ensure that you and your family are well informed every step of the way.

What to expect during transplant surgery

• Our team’s cardiothoracic transplant surgeons, transplant pulmonologists, transplant cardiologists, and pediatric cardiac anesthesiologists work side by side to ensure that your child’s surgery goes well.
• The transplant surgery generally lasts from 10 to 12 hours. Your child will be placed on a cardiopulmonary bypass during the surgery and will come out of the surgery with the breathing tube still in place while their body begins to recover.
• Your child will begin their recovery in our Cardiovascular Intensive Care Unit (CVICU), where our expert team and state-of-the-art CVICU providers care for your child. We provide collaborative, tailored care unique to each child so that recovery can occur as quickly and successfully as possible.

What to expect after transplant

The goal of undergoing lung or combined heart-lung transplantation is to help your child live a better life, to be able to breathe without needing supplemental oxygen, play without getting tired, and grow and thrive.

• Recovery takes time, and the length of recovery varies by child. Some children are able to leave the hospital within three weeks. Others need a bit longer.
• Your child will be closely monitored for the rest of their life with routine lab work, studies measuring their lung function, and ongoing assessments to make sure their new, transplanted organ is working well.
• The first year after undergoing transplant usually requires the most frequent monitoring. Over time, as your child recovers and returns to being healthy, this monitoring can decrease.
• After transplant, your child will be on immunosuppression medications, also called anti-rejection medications. These medicines prevent the body from rejecting the new organ by suppressing your child’s immune system. Your child will need to take these medications for the rest of their life to keep the transplanted organ healthy. At Stanford Medicine Children’s Health, we provide ongoing care to our transplant patients. Our multidisciplinary transplant team partners with you and your child’s local physician to support your child as they grow through the years.