HEART
The wait is very variable. We’ve had patients wait as short as 24 hours and patients wait over a year and a half for a transplant.
There’s criteria for listing pediatric and adult patients at different levels. If you’re on more medications and you require more assistance (meaning an ECMO* machine to support your heart and your lungs, or a breathing tube, or certain IV medications at certain levels), you’re actually at a higher status on the list. The UNOS 1A status is the highest, and then there’s a middle group, that’s the 1B, that are in between (they’re on IV medicines but at a lower dose), and then a status 2 is anybody that’s on oral medications and usually waiting at home. The higher the status, the more likely you’ll get a heart quicker.
Heather Bastardi, MSN, RN, PNP, Transplant Coordinator, Heart Transplant Program
LUNG
In pediatrics, it’s age and size. There is a lung allocation score for kids 12 or older, and those kids get placed on a list by blood type, but also by how sick they are, how high their lung allocation score is. For kids under 12, it’s purely just time on the list, there is no lung allocation score. With that said, we may have one infant listed at any one time (and we’re the only transplant center in the New England region, so we would get all the organ offers for that infant), but it’s impossible to know how long it will take, because you have to wait for that right blood type match and that right size match. If we list an infant, it could be that day we could get an offer, and it could be a year or more before you find the right match.
Debra Boyer, MD, Associate Medical Director, Lung Transplant Program
LIVER
Livers are allocated by the severity of the recipient’s illness. It’s not a matter of how long you are on a list, it’s a matter of how sick you are and who else needs the organ – so your size, your blood type, and how sick you are really determine how fast you will get a donor. It can be anywhere between a few days to many months or sometimes more than a year, although that is becoming less and less common because we have the option of doing those split liver transplants like I talked about.
Maureen Jonas, MD, Medical Director, Liver Transplant Program
KIDNEY
Rachel: The average amount of waiting time on the deceased donor list in this region is 100 days. We’ve had calls within 12 hours of putting somebody on the list, and some other children have had to wait for almost a year because they’re sensitized. Being sensitized is one barrier that can slow down the wait: it means that they have specific antibodies that are common to a lot of deceased donors, so that when a deceased donor comes up, they are positive to that person and then they can’t receive the kidney.
Courtney: The way you get those antibodies is either from a previous transplant or transfusions, or if you’ve been pregnant, which is not at all common in our population. Those are the three ways that you develop antibodies.
Courtney Loper, RN, MSN, CPNP and Rachel Blumenthal, RN, BSN, CNN, Transplant Coordinators, Kidney Transplant Program
MULTIVISCERAL
It depends on how sick they are and on what disease they have. For example, sometimes kids can wait up to a year! It depends. The patient we just transplanted spent 15 months on the list, which is long, but we waited for what we thought were the best organs. What I usually tell the parents is we always have the best intentions for them, and we try to the best of our judgment to pick out the best organ possible, because if you don’t do that, that comes with a whole set of problems by itself. So it’s very variable; there’s really no promises. We cannot make any promises; it’s not in our hands.
Rima Fawaz, MD, Medical Director, Multivisceral Transplant Program