That’s one of the really fun parts, where we all fight over who gets to call! It’s almost always in the middle of the night, and if they’re in the hospital, one of us will come in and wake them up and tell them, and it’s always a big celebration on the floor when that happens. If they’re home, we call their home phone, and again, families never forget that moment.
Elizabeth Blume, MD, Medical Director, Heart Transplant Program
That is probably one of the most emotional and frightening days, no matter how ready they think they are for that phone call. We have encouraged them to go on with their normal life as much as possible in the interim, although they have to stay in touch with the transplant team and we are keeping tabs on them regularly. When they get that phone call (we usually try to do it by telephone, not having a beeper or something more dramatic) they’re never ready. There are always tears and anxiety and stress, and sometimes joy, and a little bit of panic sets in.
It is a phone call from one of the members of the transplant team, a nurse coordinator or myself or one of the surgeons saying, “It looks like we have a donor organ for your child, it’s time to come on in.” We also warn them at that time that it might not happen: they may come all the way into the hospital, but when the surgeon gets a chance to really look at the donor organ, it might not be appropriate, and we might abort the whole process and they may go home without a transplant. It’s a very emotional and difficult time, but families handle it, especially if the transplant goes forward and the child does well.
Maureen Jonas, MD, Medical Director, Liver Transplant Program
Generally, they’ll get a call. Hopefully they’ve really prepared for this and basically know what to expect when that call comes. They should have a bag packed and be ready to go. They will hear from one of the doctors and come into the hospital; for some people that’s driving, for others it might be a med-flight because we do have patients that are coming from a distance. Travel plans are worked out at the time they are listed. They would then come into the hospital and go up to the Transplant Unit (most of the time – not for everyone, but there’s a plan that’s been worked out and they would know in advance where they would need to go). They would be met there by nurses and the transplant team.
There is a chance that the transplant won’t actually happen. The family is coming in to wait and to make sure that the lungs are going to be a good match for the child. So there’s a chance that they could get sent home, which is really tough. Patients and families should know that in advance. I always think, if you go through one ‘dry run’ like this, the next time it happens, it won’t be quite as scary.
Lynne Helfand, MSW, LICSW, MPH, Social Worker, Lung Transplant Program
Hurry Up & Wait
Kris: There’s a rush to get here and get everything done, and then they’re sitting in their room and waiting to get called down: there’s the hurry, hurry, hurry up, and then the wait period.
Often, when they’re in their room waiting and they’re ready to go down, we check in with them and see how they’re managing that anxiety. There’s excitement about what’s going to happen, and then the natural fear: “I’m going in for a big surgery. What’s it going to be like afterwards?” We review the information we’ve talked about before, making sure the family has support and the child knows when to expect when they go into the OR. And it’s a lot of listening on our part, just hearing where they are at that moment. Knowing that there’s a lot of things being told to them and done to them, we’re giving them the opportunity to have a voice and to say, “This is what I’m feeling. This is what I’m nervous about.” We can then communicate back with the team, “They have some questions, and they want to know about this,” and make sure those concerns are addressed.
Melisa: We also deal with a lot of disappointment. They may get called in for an organ, and the transplant might not actually occur. They may never be called into the OR, or there’s cases where they have actually been in the OR and then they wake up after and the transplant for whatever reason was not able to occur. So we try to help them with that: it’s a balance of dealing with the anxiety but also knowing it doesn’t 100% go through until you go into the OR and they actually transplant the new organ in you.
Melisa Oliva, PsyD and Kristine McKenna, PhD, Transplant Psychologists
It’s hurry up and wait. They come here and have a flurry of repeat blood work, probably do some X-rays, things like that, get ready, make sure they’re not sick and having an acute illness that would preclude the transplant. Occasionally the organs will come quickly and we’ll be ready to whisk them off to the operating room, but sometimes (more often than not) there’s a delay, and then they just sit here for six hours and do nothing and can’t eat, and it’s hard and the kids don’t understand why they have to just wait. But we prepare them as best as we can for that unpredictability. And sometimes, something happens and you cancel the transplant. The organs start to not look so healthy, there’s a problem or something, and they aren’t going to fit properly, the sizing isn’t right. And we warn parents about this: there’s a pretty good chance they’ll be called in for at least one dry run where they come in, and we’ve had patients as far as we call them before they get here and cancel it, or they get here, they go under anesthesia, and then it gets canceled. It just depends on when you learn about the problem, and you hope it doesn’t happen, but there’s a reasonable chance it will.
Debra Boyer, MD, Associate Medical Director, Lung Transplant Program
The surgery itself depends on how sick the child was going into transplant…I would say it takes anywhere between eight to ten hours. If it’s going on during work hours while the coordinators are here, we’ll update them. We’ll go into the OR then we’ll come out and tell them what’s going on. The surgical liaison nurse in the PACU has the parents’ cell phone number and they’ll update them hourly, and they can also call in too, to the nurse to see how things are going.
Courtney Fratto, RN, MSN, CPNP, Transplant Coordinator, Multivisceral and Liver Transplant Programs