Living donors are scheduled. If it’s not a living donor, then we get an organ offer and we evaluate the organ donor. If it’s felt to be appropriate, then we’ll call the family in. There are often delays with getting the donor organs out, but we try to time it so that we have minimum time with the organ out between the donor and recipient. So often there’s sort of waiting around and then rushing to get things done, and that’s fairly common. The whole process, from the abdominal organ standpoint, usually takes around 24 hours.
Heung Bae Kim, MD, Surgical Director for Liver, Intestine, and Kidney Transplant Programs, Director of the Pediatric Transplant Center
Assuming the lungs are a good match, the child would then go to surgery. And then for the parents it’s a lot of waiting. They get frequent updates; there are liaison nurses that will check what’s happening in the operating room so the parents know what’s going on. It can feel very long. Once the surgery is over they go with their child to the ICU.
That’s basically what to expect on the day of transplant. It’s an anxiety-ridden time. We hope that getting the information is helpful in easing some of the anxiety.
Lynne Helfand, MSW, LICSW, MPH, Social Worker, Lung Transplant Program
Rachel: Deceased donor transplants can happen at any time, any day. Sometimes the doctor is calling patients in in the middle of the night, it could be during the day when we’re all here – it’s very variable. Some patients need hemodialysis before they go into the operating room – it’s all individually-based, and we all know ahead of time what that person will need when they get called in.
For living donor transplants, it’s scheduled for one day, and we always plan the things around that one day: so they come in for pre-op, we do all of the admission and everything, and then we do the transplant on that day that it’s scheduled.
Courtney: The surgery itself is about four to six hours, and they’re in the operating room with the surgeons and the urologist. When the child comes out of the OR, children under 20 kilograms go to the ICU and children over 20 kilograms go straight up to the floor most of the time; there are exceptions, but for the most part that’s true.
Courtney Loper, RN, MSN, CPNP and Rachel Blumenthal, RN, BSN, CNN, Transplant Coordinators, Kidney Transplant Program
We give them sort of a road map at the family meeting, but you only take in about a quarter of what you hear, so we review all that: “We often will tell them that the first day, “Johnny is going to be pretty wiped out and sore, and probably the donor’s going to be more sore because the donor has different incisions, but very quickly they’re going to get your child up and you’re going to be amazed, in a day or two, to see what he looks like!” We tell them that there’s going to be a whole team: there’s going to be a renal team, there’s a surgical team, there’s a floor team – and oftentimes I’ll say to them, “Let me just tell you what the pecking order is here, because you may or may not know what the pecking order is. This is a big teaching hospital, you’re going to be seeing a lot of people, and there’s always a senior person in charge in every discipline.” I go through with them what an attending is, what an intern is, what a fellow is, what a nursing student is, all this sort of stuff. “So all these people are going to be taking care of your child; you’re going to get sick and tired of having all of these people come in, you’re going to become the expert in all of this, but you’re also going to have to be the historian, so you’re going to tell them what happened yesterday and what happened this morning, not that the nurses and doctors aren’t going to know it, but you’re going to know it better because you’re sitting here.” We also tell them things like, “The first time you try to get out of bed, it’s going to be really hard. Nobody wants to get up when they’re hurt and they’re afraid and they’ve got a catheter in. The first time is the hardest. We’re going to see you walking down the hall in a few days, and you’re going to be strutting down the hall,” and so on and so forth.
We tell them about how long they may expect to be in the hospital, and explain that it has to do with healing, but also with teaching: this is all new information, and we really want families to be comfortable. One of the things I often suggest is that they get a notebook if they don’t have one. Just jot down their questions, because you may think of it at 4 o’clock in the morning, but you may not remember it.
And then we talk about how, “If he winds up being here in 5 days and he’s cranky and he’s crying a lot and you haven’t had sleep and you have other stuff, you’re going to be pretty tired.” We will often tell them (and of course they always laugh at us!) that they need to try to get as much sleep as they can, they need to eat, they shouldn’t just disregard their own health needs or anybody else in their family. We say, “Let us know if we need to help you negotiate other things, like your job or other responsibilities at home–” and certainly by then we already know whether there are financial stressors or other things like that. “You need to tell us what you need. We’ll ask you a lot of questions but you need to tell us what you think your child needs.”
Roberta Hoffman, MSW, Social Worker, Kidney Transplant Program