Once the formal evaluation process is complete and our multidisciplinary team has determined that lung transplant is an option for your child, you will be notified and required to sign a consent form prior to your child being added to the United Network for Organ Sharing (UNOS) transplant waitlist.
The United Network for Organ Sharing (UNOS) is responsible for transplant organ distribution in the United States. UNOS oversees the allocation of many different types of transplants, including liver, kidney, pancreas, heart, lung, and cornea.UNOS receives data from hospitals and medical centers throughout the country regarding adults and children who need organ transplants. Our program will hold the responsibility of sending the data to UNOS and updating them as your child's condition changes and on scheduled intervals.
Lungs are allocated to patients based on the age, height, and blood type of the patient. Patients that are <12 years old, lungs are allocated as per body size (height), blood type, and amount of time on the waiting list. Patients that are 12 years and >, lungs are allocated based on a scoring system that determines who on the waitlist is the most sick versus who has been on the list the longest.
During the waiting period, your child will be followed by both your primary care physician and by our team. We require your child to be followed in Lung Transplant clinic every month. It is our goal to keep your child as healthy as possible prior to the lung transplant surgery.
The Lung Transplant Program team will develop and discuss a medical plan for your child that will include: nutrition, physical therapy, medication and clinic schedule. Adherence to your child’s medical plan is imperative for a successful pre- and post-lung transplant period.
If your child gets ill during the waiting period, please immediately contact the Transplant Nurse Coordinator/Nurse Practitioner Katie Oshrine at 267-426-0664. She will assist in a treatment plan and decide if your child’s status would affect UNOS wait listing. Some illnesses are serious enough that your child’s waitlist may need to be temporarily deactivated until health status is stable, when they can be reactivated.
Your child could also be deactivated because they are too well, in which case they will remain in the UNOS database and continue to accumulate time on the waitlist although unable to accept active organ offers. If removed from UNOS, your child's information will no longer be in the system and they will no longer be able to accept active offers or accumulate time on waitlist.
Waiting for a suitable lung to become available can take weeks, months and possibly a year or more. During the lung transplant waitlist period, your child will be required to have ongoing evaluation and testing necessary to update UNOS criteria.
When your child is listed for a lung transplant, we will need to be able to reach you 24 hours a day. You must have a cell phone or beeper in order for the transplant team to contact you at any time to come in for the transplant. If you cannot afford a phone or beeper, the Transplant Social Worker may be able to assist you with possible resources.
We do not require patients and families to live near Our hospital. At the time of listing for lung transplantation, we will help to develop a transportation plan for you and your child in the event of transplant.
When new lungs become available, one of the heart/lung transplant coordinator(s) will contact you and ask you and your child to come to Children’s Hospital. We will try to reach you by phone before we use the beeper or pager system.
You will be made aware that a donor offer was made, it was reviewed by the Attending/CT Surgeon, the donor meets all criteria, and the lungs were accepted. You will be instructed that your child is nothing by mouth, and you will be directed to come into CHOP as quickly as possible.
We cannot share with you any private information concerning the donor, such as: cause of death, where the patient is coming from, age, etc. In some cases, the donor history could suggest that the donor is considered a CDC High Risk Donor and in that case that specific donor information is shared with you. The attending and you in these circumstances will decide together to accept or not accept the offer.