PHA Pathlight Spring 2014 - (Page 43)
Tr a n s p l a n t a n d Yo u r C h i l d : Fr o m L i s t i n g t o N e w L u n g s
"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
he 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. w
By Katie Byrne-Oshrine, RN, CRNP, Nurse Practitioner and Transplant
Coordinator, CHOP, and Debby McGrath, MSS, Social Worker, Division of
Pulmonary Medicine, CHOP
Transplant webinar: Dr. Samuel Goldfarb, Katie ByrneOshrine and Debby McGrath recently offered a webinar on
the pediatric transplant process. View the recording at
PATHLIGHT SPRING 2014
Patient-to-Patient Support Line: 1-800-748-7274
Table of Contents for the Digital Edition of PHA Pathlight Spring 2014
Coping with PH
Ask a PH Specialist
Advancing the Cause
PHA Pathlight Spring 2014