How do families deal with bumps in the road, like infection and rejection?
Melisa: There are children/adolescents who fly through the transplant process and tend to do well. Then there are kids that unfortunately have a lot of bumps in the road and we’re not always clear on why this is the case. There are risks that are explained pre-transplant, and sometimes children/adolescents develop illnesses from the transplant process itself. The main message is it’s not a cure; it’s trading one illness for another. The biggest frustration I see for families is, yes, transplant is going to be a better option with better quality of life, but there are still very annoying things that are going to get in the way. Immunosuppressed patients are more likely to get sick, and then they’ll have to come back to the hospital and miss school again. They may not be able to do certain activities or sports after the transplant if it affects the organ. They may not be able to swim in lakes or ponds. They may not be able to do everything exactly that their friends are able to do. Even though we say that before the transplant, I think when the reality hits them after the transplant they struggle a little bit more, which is understandable. We try to prepare them: things are going to be better, but it’s going to be a new kind of normal. We can definitely help with the emotional rollercoaster a transplant can evoke.
Kris: Like I said at the beginning, it’s a process. There are going to be good days and bad days. I think sometimes kids want to say, “This really stinks, and I can’t believe I’m back here.” There might be a tendency to jump on that and say, “Oh, but you’re doing really well, and then when you get out of here, you’re going to do great!” or something similar. But they’re not there. At that moment, they’re in the hospital, not able to do things, and it’s okay to be bummed out about that. So we let them express that, say, “Yeah, you’re right, it stinks,” and just listen to them. You don’t always have to fix it right there at that moment. Just being there and being able to listen to what they’re feeling can be the best support.
Melisa Oliva, PsyD and Kristine McKenna, PhD, Transplant Psychologists
Heart transplant complications
We look for infection, we look for rejection of the organ, that their body is recognizing their new graft and may be rejecting it. We’re looking for some of the side effects of the medicine (high blood pressure, their kidney function, their sugar, their risk for diabetes, and their bones) – so we’re monitoring their graft, but also the rest of their body. I always tell families to expect a readmission, even though it is rare. There is so much close surveillance in the first few months. But having said that, many of our kids do very well.
Elizabeth Blume, MD, Medical Director, Heart Transplant Program
Lung transplant complications
I tell families that there are going to be complications, and there are some patients that go years and years without any rejection episodes or any infection episodes, and there are other patients that have three or four infectious episodes in a year. So I think it’s hard. There’s a lot they can do to minimize that; some of it is luck, but being compliant with your meds and staying away from actively sick people and taking care of your health will minimize your chance of having infection or rejection.
Unfortunately, there are people who do everything we ask and do everything perfectly, and unfortunately they still have an episode of infection or rejection, just because it’s going to happen, you’re at risk. It’s certainly going to be less of a risk if you do the things that we ask.
Debra Boyer, MD, Associate Medical Director, Lung Transplant Program
Rejection and infection are pretty common with lung transplant. We have less of what we call ‘acute rejection’, which is something that usually happens within the first year; we have less of that now than we ever have because of some medication changes that we’ve made. Nonetheless, for the first 18 months, we do bronchoscopies, which involves putting a scope down into their trachea and into their larger airways: we take cultures and we do little biopsies to look for rejection. We do that four, five, six times the first 18 months, and anytime in between that there’s a problem. That’s how we monitor for rejection, and we pick up a lot of infection that way as well.
Dawn Freiberger, RN, MSN, Lung Transplant Program
Liver transplant complications
In the liver transplant scenario, rejection is actually fairly common, but it’s not a frightening thing to us. We take care of these children relatively easily. Rejection doesn’t cause permanent end-organ damage unless it is allowed to continue. We actually almost like to see a little bit of rejection – it tells us we are skirting the margin of how much immunosuppression the children need. Much more worrisome than rejection is actually the opposite: too much immunosuppression and the infections that can affect these children, sometimes quite severely. Rejection of a liver transplant is common but easily managed in the majority of cases. Infections are what we really worry about the most.
We have very vigorous monitoring strategy for the serious infections that we worry about, such as CMV (cytomegalovirus) and EBV (Epstein-Barr virus). We give the parents pretty good guidelines about things to call us about that they may be worried about. We work closely with the primary care doctors and they play a very important role here. We want to make sure that the families are comfortable with their pediatricians, that their pediatricians know what to look for, that they know when to contact the team, and so forth. So we hope there is a very large support service for them in assessing this, and as time goes by, they get better and better at understanding what is serious, what is not serious, and what to call the transplant team about.
Maureen Jonas, MD, Medical Director, Liver Transplant Program
Importance of education
Most of the time when they have rejection it comes from non-adherence, and who’s most non-adherent? Adolescents and young adults. So that’s really hard. First of all, they’re in a lot of denial. They get treated and they get out of here, and eventually they’ll kind of let on that they really weren’t taking their meds, so you do a lot of education with them. “You’re telling me you want to go to college, you’re telling me this is what you want do; how do you think you’re going to get there? If you’re sick, you won’t be able to do all these things.” In fact, I just had this conversation with somebody a few weeks ago. I said, “You want to keep this kidney. You want to grow old and grey with this kidney. How are you going to do that? You got to think about that, you got to think about not just what you’re doing today and tomorrow, you’ve got to think about what you want to be doing in five years. You have to think about what you want this to look like.”
More than that what happens is kids will have either complications so that they’re here in the hospital for a very long time after the transplant, because either the kidney hasn’t worked well or they’re having some kind of a complication. The other thing that happens, though, and this is really hard, is some kind of kidney diseases can actually come back in the transplant. So supporting the families through the ups and downs of all of that is really hard. There’s a lot of crying, there’s a lot of just sheer compassion and support and listening to them and trying to help them through their day, trying to help their perspective on this, that we’ll get them through the mission, we’ll get them through whatever, helping them put one foot in front of the other.
Roberta Hoffman, MSW, Social Worker, Kidney Transplant Program