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How do we get on the waiting list for a new lung?
Once you and your doctors decide that a lung transplant is the most appropriate treatment option, your child will be "listed" on a national computer system maintained by the United Network of Organ Sharing (UNOS) as a potential transplant recipient. UNOS matches organ donors by size and blood type with children waiting for a new lung.
How are transplanted organs allocated?
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.
Criteria have been developed to ensure that all people on the waiting list are judged fairly as to the severity of their illness and the urgency of receiving a transplant. Once UNOS receives the data from local hospitals, people waiting for a lung transplant are placed on a waiting list and given an allocation score. The people who would benefit most from a lung transplant are placed highest on the allocation list, and are given first priority when a donor organ becomes available.
This allocation score applies to adults and children who are age 12 or older. For children younger than 12 years old, lungs are allocated according to the time accrued on the waiting list.
When a donor lung becomes available, a computer searches all the people on the waiting list for a lung and selects those of the appropriate size and blood type. A new list is made from the remaining candidates who are ranked according to allocation score. The person at the top of the specialized list is considered for the transplant. If he/she is not a good candidate, for whatever reason, the next person is considered, and so forth.
How long is the wait?
The wait can be from days to months to years depending on the severity of illness, blood type and weight. You will be given a beeper for us to be able to reach you at all times.
What happens while we wait?
Use your waiting time to prepare for your child's surgery. A donor lung can become available at any time of the day or night. It is very important to plan ahead for when this occurs.
Planning how you will get to the hospital has to be well thought out in advance. Depending on how far you live, relocating closer to the hospital may be necessary if you can not get to the hospital within two to three hours of the initial call.
If you are organizing your own transportation on the day of surgery, consideration must be given to the possibility of inclement weather, distance, and rush hour traffic. You must plan well in advance for other factors such as:
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