Transplant and Your Child: From Listing to New Lungs
“As with PH, building a relationship with your transplant team is so important. It is vital that you have faith in their care, and the transplant team similarly has to trust that you will care for these precious, new, life-saving lungs. It certainly helps to start this process early, perhaps even before your child is truly ready for transplant." — Christina Doak, parent to a child with PH who received a lung transplant
The transplant process can be confusing and overwhelming for families: When should your child go on the transplant list? How long will it take? How will it change your child’s current medical visit schedule? What will happen when a new pair of lungs, or heart and lungs, becomes available? How long is recovery from a transplant? Read on for a brief overview of the transplant process, and visit www.PHAssociation.org/Classroom/Parents/PedTransplant to learn more.
Getting on the List
Ideally, families should meet with a transplant center early to establish a working relationship. Talk to your child’s pediatric PH specialist and your local transplant team, if possible, to determine the best time to put your child on the transplant list.
Following a referral to a lung transplant provider, you and your child will be scheduled for a multidisciplinary evaluation with the lung transplant team. This can be done either inpatient or outpatient depending on the health and surrounding circumstances of your child’s medical condition.
During the evaluation, you and your child will meet with the transplant team and appropriate sub-specialists to determine if a transplant is the best treatment or if there are other medical or surgical options for your child. These providers include doctors, nurses, physical therapists, dieticians, pharmacists, social workers, psychologists, and financial counselors. Input from each member on the transplant team is critical to making the decision to place a child on the waitlist. The transplant evaluation is an ongoing process and requires candidates to be monitored closely and undergo a series of testing and consultations on a routine basis. It does not end with the initial consult.
Waiting for New Lungs
Most children wait for their new lungs at home. You and your child should be ready for the transplant call to come at any time. Be prepared by keeping a packed suitcase ready, know the route you will use to get to the hospital, and know where your family plans to stay while your child is in the hospital.
The Transplant Donor Call
When an appropriate organ donation becomes available, the transplant coordinator will ask you and your child to come to the hospital. You will be given instructions on where to go in the hospital and will be told that your child will need to be made “NPO” (they may not eat or drink) in preparation for surgery.
Admission for Transplant Surgery
Once admitted to the hospital before the transplant, the hospital staff will conduct a number of tests, including blood work, chest X-ray, EKG, echocardiogram and vital signs. They will have a peripheral IV placed for surgery. You will review consent forms with both anesthesia and surgical teams, and your transplant coordinator will provide further guidance and preparations prior to transporting your child to the operating room for surgery. A team of surgeons, called the “donor team” or “procurement team,” is charged with picking up the organs for your child’s surgery.
Following surgery, your child will remain in the intensive care unit for recovery for approximately five to seven days. Then your child will transition to the inpatient units. During the hospital stay after surgery, your child and your family will be involved in a number of activities designed to help your child recover from transplant surgery, monitor the function of your child’s new organs, prepare your child for going home, and inform you about your child’s healthcare and lifestyle once he/she is discharged from the hospital. You and your child’s healthcare team will work together to develop a medical care plan for your child post-transplant.
By Katie Byrne-Oshrine, RN, CRNP, Nurse Practitioner and Transplant Coordinator, CHOP, and Debby McGrath, MSS, Social Worker, Division of Pulmonary Medicine, CHOP
View information from PHA's Scientific Leadership Council related to pediatric transplantation