Transition to home can be a little bit traumatic sometimes, because they’re used to being in an environment where there’s nursing staff available 24/7. But we do our best to prepare them for home: a lot of teaching, nursing teaching, pharmacy teaching. And we have usually twice a week visits, at least in the first couple of weeks after they go home, so they’re not forgotten about, and they’re able to call whenever they need to call for questions. Sometimes they go home with a visiting nurse, so it’s variable, but we try to get them prepared as best as possible.
Heung Bae Kim, MD, Surgical Director for Liver, Intestine, and Kidney Transplant Programs, Director of the Pediatric Transplant Center
What is the transition to home like?
I always ask them, “What’s the first thing you did when you got home?” And they always say they go to their refrigerator. So being able to have the freedom to reach for whatever you want whenever you want seems to be something that kids miss when they’re in the hospital! And their own beds, I think. But it’s hard too. They’re used to being the center of attention on the ward, being all the news here, and then they go home and it’s just home, and we expect them to go back to being a normal kid, and I think that transition from being a sick kid to a healthy kid can be really paralyzing…They actually need more support in that first six months after transplant than you would imagine. A lot of them meet with our social workers and our psychologists, just sort of to figure out how to get back to school, how to tell their friends what happened – for their parents, how to sort of let that go a little bit, because now they have a normal heart. So there’s a lot of transition work that first year after transplant. For some of these kids, they’ve never run before, they’ve never been able to go to school a full day, and now they’re pink, with a normal heart, and it’s an interesting transition that we often underappreciate.
Elizabeth Blume, MD, Medical Director, Heart Transplant Program
It’s a pretty big event! All the medications have to be here, all the home care supplies have to be here, there are several things to be done the day of discharge – even though you try not to have it happen that way, it always does. The patients have to fill their pill box at the hospital before going home, all these different things. So it’s very exciting and very intense the day of discharge.
They’re very restricted for the first three to six months in what they’re able to do because of their level of immunosuppression. So they can’t go to school, they can’t work; I try to discourage them from going to movie theaters, enclosed places. Some patients are very debilitated and can barely walk; others are in a much different place. But the infection piece is the same for all of them: they are very restricted in what they can do for the first few months.
Dawn Freiberger, RN, MSN, Lung Transplant Program
We work as a team to help prepare the families for transition home, and try to make it as smooth as possible. To make sure all patients have the medications they need, we work with pharmacies to have all medications delivered here to the hospital before they go home. We provide all of our families with a medication schedule that helps them visualize which medications they need to take at various times of the day. For those of our patients that are able to take pills, we provide them with pillboxes to help them organize their medications. If the families are interested, we even assist them with filling up their pill box for the first time. For patients on liquid medications, we make sure they have an ample supply of oral syringes, and that they are comfortable measuring the medication doses with the syringes by themselves. By providing families with all of the information and tools they will need, we hope the transition home will be easier for everyone.
Jennifer Gilarde, PharmD
A lot of times parents feel this huge emotional letdown after transplant, because you’ve waited a really long time for this and you’ve hoped and you’ve prayed and you’ve bargained, and it happens and you’re really excited when it’s happening, and you have your fingers crossed the entire time, saying, “Please, please, please, please, please let these organs work, let my child come back out,” and then they do, and then you’re in the hospital and it’s sort of just day by day minutia things that they’re tweaking and they’re doing this, and I think a lot of parents report just feeling this huge emotional crash. I think they don’t realize how much stress and strain they’ve been holding that whole time, and so after it’s happened, it’s just like, oh my God. So a little bit of depression, a little bit of anxiety, a little bit of frustration – if you feel like you’re snapping at your partner or if your family supports, or people who’ve always been great for you and they’re annoying you, little things like that – that’s really, really normal. At the same time, if you’re noticing that and it doesn’t seem to be getting better after a couple of days, and if we as social workers have not already recognized that with you, please, please come talk to us. There’s a range of normal for things, but definitely if someone has a history of depression or anxiety, immediately post-transplant can really exacerbate that and bring that back out, especially the first few days after you get discharged home. When you’re in the hospital, everybody’s watching and everybody’s paying so much attention to every little detail about what’s going on, and then you’re home for the first couple of days and you’re by yourself, and maybe your husband’s gone back to work or maybe there’s no other support in the family anyway and it’s just you, and the pressure and the anxiety…we know it can be overwhelming.
Emily Holman, MSW, LICSW, Social Worker, Multivisceral Transplant Program
They’re all thrilled to get out of here! But they’re all nervous, because they’ve been doing their child’s care here, but it’s a whole different thing to go home by yourself! It’s like going home with a new baby.
We’ll talk to them a little bit about going home: “I know, you’re going to go home, and everybody’s going to want to have a big balloon party for you, but you may be kind of wiped out when you get home.” We give them a bit of psycho-education about what they might experience when they get home, both in terms of talking to people who haven’t been through this, or trying to protect the child, or needing to let the child do what the child really can do and how that’s going to be really hard for them, or how they’re going to negotiate their work life and what that means, or the fact the other children in the family can be really angry with them because they’ve been here, and what they might expect from the other kids, a lot of normal parental stress around big changes.
But if they have any questions, they should call, and we always really encourage them to do that. Again, we tell them the fellows are here 24 hours a day. They’re the first people that answer the phone, you’re going to get all that information before you leave about how to contact people, you shouldn’t hesitate; no question is stupid.
Roberta Hoffman, MSW, Social Worker, Kidney Transplant Program
Adjusting to a new diet
Courtney: Within about a week, they’re usually feeling back to normal. The babies take a little bit longer to get to feeling better, but they do within a few days as well. They feel amazingly better after transplant, after a short period of time.
Rachel: And even little things, like just eating food. Some of our patients have never had milk! They haven’t had milk because their phosphorus and calcium levels were high prior to transplant… so they’re really excited about not having diet restrictions or needing to watch what they eat or anything, so that’s really fun to see.
Courtney: A lot of times, they’re told they can’t have more than a liter to drink pre-transplant, and then after transplant, it’s like, “Drink up! Drink everything you possibly can!”
Courtney Loper, RN, MSN, CPNP and Rachel Blumenthal, RN, BSN, CNN, Transplant Coordinators, Kidney Transplant Program
How does life change after they go home?
Usually their diet is way freer than it was when they were on dialysis, because when they’re on dialysis they can’t have much potassium or much phosphorus – which basically is all fruits, vegetables, dairy products, too much protein, they are often restricted with fluid. They continue to be sort of restricted with salt, because salt is the one thing that really keeps their blood pressure up. With the babies, the really little ones, some of them have actually never eaten and don’t even know how to eat! They may need some oral stimulation to help them learn how to do this.
Another change is, your kidneys take all the toxins out of your body, and when they accumulate between dialysis treatments, apparently it’s like having cotton batting in your head. It’s called uremia, and you don’t think quite as clearly, you’re not quite as focused, you’re not quite as lucid. Patients tell us that after transplant that changes, so that’s one thing.
Also kids with renal failure are often on growth hormone, so they’re getting shots every single day. Renal failure patients have growth hormone, but it doesn’t get activated properly, so they don’t grow normally. For a few months after transplant they may not grow so much, but when you have a normal kidney, you grow! So you watch these kids grow: their bones are healthier, they’re not on the restricted diet, they’re able to exercise, and they physically grow in a much more normal way.
Roberta Hoffman, MSW, Social Worker, Kidney Transplant Program
Transitioning back to school
As the child’s getting ready to move back into school, we have a fair amount of communication with the school to figure out what’s going to make sense for them: can they tolerate a full day?
There’s generally three months when they’re not allowed to go to school and are getting tutored at home. They might feel ready to go earlier than the 3 months – and we’ve had kids that were really bored, they wanted to be back in school – but because right after transplant, their immune system is more suppressed, we don’t want them in big classroom settings. So frequently the kids are more than ready to go back before we let them! When they are able to go back, usually they don’t need a lot to happen during the school day but some kids do take medicine during school and would go to the nurse for that. Most medications can be taken before school and in the evening at home.
There’s a back-to-school program, so for some kids, they might choose to have hospital staff come in and talk to their class about what they’ve gone through and what transplant is like. Other kids in the classroom may share their experiences with hospitals. It can be helpful for the child who has had the transplant to feel like it’s an open conversation, that their friends are able to ask them questions and get answers.
Lynne Helfand, MSW, LICSW, MPH, Social Worker, Lung Transplant Program