There’s a lot of questions about what it’s like to wait, like, am I going to get a beeper? What’s going to happen at the time of transplant? There are a lot of questions about the surgery itself, and obviously worries about pain, and everybody wants to know how long they’re going to be in the hospital, that kind of thing. They also have some questions about life post-transplant, but I find that most families ask the majority of questions about what’s going to happen at the time of transplant, and the other stuff is information that we need to offer.
Dawn Freiberger, RN, MSN, Lung Transplant Program
Some of the common questions I hear from children and teens are “Can I get up and still play games afterwards?” “Can I go back to school?” “Will I be able to eat chocolate ice cream, because I can’t eat chocolate ice cream right now?”
If a child or teen is receiving an organ from a deceased donor, they may ask whether they’re going to take on any traits from the person who had the organ. Some parents will ask how to get in touch with the donor family- and I’ll encourage the family to speak with the social worker. But for a lot of kids, it’s not about what’s going to happen after the procedure, but rather, what does it mean right now? Can I still play Candy Land? Do I really need to wear the hospital pajamas down to the operating room? Will my parents be able to come down with me?
Kirsten Getchell, MS, CCLS, Child Life Specialist, 10 South
At the point that transplant is being discussed, both the parent and the child are generally very well aware that they’re really reaching a point in their child’s life where the options are limited. Everyone approaches this differently but often they’re thinking ahead and managing both their hope for this to work as well as their fears about what’s going to happen if it doesn’t.
Sometimes kids can be very matter-of-fact and sometimes things that you think might be very upsetting for them aren’t. We just want to give them the information they need in the most accessible way for their age and their way of coping. Kids are often thinking of things the parents don’t think they’re thinking about. They’re wondering if they could die, or what happens to their lungs. What happens if they have a rejection episode? Or might they get some traits from the donor if they have their lungs? These are things that I’ve often heard.
Lynne Helfand, MSW, LICSW, MPH, Social Worker, Lung Transplant Program
Sometimes kids and teenagers ask questions about where the organs are coming from, whether it’s a living donor or a deceased donor, and that’s some information that we can process with them. Some questions are a little bit more procedural: what they’re going to go through when they’re in the hospital, and what they’re going to feel like before and after, and pain control and things of that nature.
We’re working with them on what they’re concerned about, making sure that the team knows what questions they have, but also asking, “How are you going to cope with this? What’s it going to be like if you feel pain? What have you done in the past when you’ve had to have a procedure? What’s worked for you? What hasn’t worked for you?” It’s empowering them in a way, letting them know, “You’ve got some good skills, some things that could help, so let’s just make sure we bring those out.” A lot of times kids feel like things are being done to them and they don’t have a lot of control, so we try to help change that tide and say, “Okay, there are some things that are going to happen to you, and they can be kind of scary, but you have people that can support you and you have some skills you can use on your own.”
Sometimes parents ask about what they should be looking for if their kids are having a hard time. Again, it’s reflecting back to the parents, “Okay, in the past when they’ve been struggling, what have you noticed?” It gives us good information, but it also reorients the parents: they’re experts on how their kids are doing, and it helps to reinforce that too.
Kristine McKenna, PhD, Transplant Psychologist
Courtney: Can my child play sports? That’s a big one. The answer is yes. You can do anything you want to do, and that’s the whole purpose of getting a transplant, to make your life as normal as possible. If they’re old enough, we recommend that they use a kidney protector for contact sports, and we measure them for it in clinic. It’s no big deal, it’s easy, and it just becomes part of their routine. Other big questions are, can I feel it? (The answer is no!) How often are we going to be seen? What do we do if they get sick?
Rachel: What medications are they going to take? How long do they have to take them for? What are the side effects and reactions that we’ll see? What happens when they get sick?
Courtney: …When I have questions, who do I call? That answer is us!
Courtney Loper, RN, MSN, CPNP and Rachel Blumenthal, RN, BSN, CNN, Transplant Coordinators, Kidney Transplant Program
How are long are they going to be in the hospital? They’ll say, “I’ve heard you have to stay for six months!” Are they ever going to come off PN? The answer is once they are tolerating some enteral feeds and we can see growth in that their ostomy output is stable then we’ll slowly wean them off PN. The goal is to get them off PN within about three weeks after transplant.
They will also ask can they get the central line out? We usually say the day before discharge, whatever length of time they’re going to be here. The length of time question is really hard to decipher, because if they were born prematurely and they have lung disease and they end up in the ICU for a long time on the ventilator, it’s weaning the ventilator, then getting them off the ventilator, then getting them to the Transplant Unit, then weaning their narcotics – so it’s usually weeks. We usually say weeks, a month or two at best.
Another question is when can they start eating? The older kids who need an isolated intestine, they just want to eat, because they’ve never eaten before! So, when can we start eating? Those are the main questions. And the answer is usually once their ostomy output is stabilized and once they’re stable, we’ll let them taste some food in their mouth by the second week.
Courtney Fratto, RN, MSN, CPNP, Transplant Coordinator, Multivisceral and Liver Transplant Programs
What should families do if they have questions?
As great as our website is for information, I really push parents to not scan the web for information, because there’s a lot of misinformation out there. There are people who write things that aren’t medically right and there are lots of resources that just aren’t accurate, and I think they add to families’ anxiety. So when you’re using the web, just be sure that you’re using a dedicated site that you trust. Again, I think just calling and talking to one of our coordinators or one of our docs is really the best way to find out whether transplant is an option for your child. That’s still the best way.
Elizabeth Blume, MD, Medical Director, Heart Transplant Program
There are some families that call me over every little thing, but I’d rather that than the family that thinks they know best and don’t call me when they should! I encourage them to call me with anything and everything that they are concerned about.
Dawn Freiberger, RN, MSN, Lung Transplant Program
I always tell families, you’re going to leave this room and come up with 20 questions, so write them down. When you’re reading through the transplant handbook we give you, keep a pad of paper, write down questions. And then they can either email us or call us, or have the nurses page us if they’re an inpatient. We can talk about it. But I think it really is asking questions. And I just want to emphasize that every situation is so different, the families shouldn’t be embarrassed to ask whatever’s on their mind. Nothing is stupid.
We also discuss the Internet and all the wonderful resources that are out there, and the way I explain it to families is I say, “There’s a lot of great stuff out there on the Internet, but you have to be very careful in how any of it applies to you and your child.” I don’t tell them not to look on the Internet, I think that would be stupid – who’s going to not look up something if they’re Internet-savvy and capable? But I will tell patients to put it into perspective, and then write down what they’ve read and review it with us – print something out and ask me, “How does this apply?” And I might say, “Oh, that really is kind of a similar story and you might expect to have a similar thing,” or, “That has nothing to do with your kid because of this, this, and this; this is a totally different disease and a totally different scenario.”
I don’t discourage them from looking; I just warn them that there’s so much out there – some of it’s bad information and some of it’s good, but it’s hard to know.
Debra Boyer, MD, Associate Medical Director, Lung Transplant Program