Initially, for the first several weeks (between eight to twelve weeks after their discharge), they are seeing us a lot. We see them in clinic twice a week initially, and they’re not able to go back to school because of their infection precautions, so that’s often a letdown for them. We talk about it a lot before, because we’ve had the experience that it’s tough, because they feel well and they have the energy and really want to get back into the swing of things, but medically they can’t quite get back there yet. So it’s still medically intense for several weeks after, and then it really starts to spread out. About three months after transplant, they’ll say to me in clinic, “This is the time you meant, that things will start to settle out.” Appointments are less frequent, there’s less medications they’re taking, they can start to breathe again and can expect what the next day is going to look like.
Heather Bastardi, MSN, RN, PNP, Transplant Coordinator, Heart Transplant Program
If you go home in three weeks, we might see you weekly for the first month, and then every other week, and then every three weeks, and then every four weeks… and at some point, hopefully by six or eight months, we’re going to every three months in terms of checking in. We do have a protocol for the first couple of years after transplant: we’ll do bronchoscopies at six weeks, three months, six months, and that’s when we’re looking for infection or rejection.
Debra Boyer, MD, Associate Medical Director, Lung Transplant Program
Courtney: For the first two months post-transplant we see them twice a week; for the next two months post-transplant it’s once a week; next two months it’s every other week, and after that its monthly until about a year. After a year we might spread it out longer, ultimately to six month visits after a couple of years. In the meantime, they will always, for the life of the kidney, have monthly labs, and the monthly labs show us all of the numbers that we’re looking for. We can see whether or not we have any concerns for infection. We get phone calls from parents in between that month if they’re concerned about urine or fever, anything, and they always go and have labs checked right away – that’s often our first recommendation, and then we can evaluate from there what we need to do. Bumps in the road are very common. We say every patient should expect them. Most of the time, we are able to quickly manage the issue. Sometimes, it may require a hospitalization for further evaluation or treatment.
Rachel: I think after they reach those milestones of like two months, four months, six months, and they’re going a month between appointments, they really start to see, “This is great not having so much to do! Yes, we can do our meds, but that becomes routine,” and then we see them once a month, which is great, because the rest of the days, they’re doing all of their regular things! It’s really great.
Courtney Loper, RN, MSN, CPNP and Rachel Blumenthal, RN, BSN, CNN, Transplant Coordinators, Kidney Transplant Program
Typically we see them in the clinic twice a week after discharge for one or two weeks, then once a week. After that, twice a month; then once a month for another three months; and then, depending on the case, every three months with labs every month.
After transplant, if it was a smooth-flying transplant, they would probably get labs once a month. This is the absolute minimum for one year. And then after one year, every three months.
Rima Fawaz, MD, Medical Director, Multivisceral Transplant Program
Feeds after transplant
With multivisceral, it changes in some ways but I think in a lot of ways it still stays similar. Their kids are probably still on feeds. The goal will be eventually for them to go to solid foods, but depending on how old they were when things happened, it might be a while before that happens. They’re taking lots of medications, we’re still getting blood draws really frequently, so probably in the day-to-day life experience for a multivisceral patient, it probably doesn’t change all that much right away. Then slowly, as you get further out, you’re coming to clinic less often, they can take off some medications, and the patient is tolerating advancing of feeds and changing of feeding schedules and things like that. I think eventually they have more freedom, more time, more ability to do things and go out and be mobile and things like that. With the multivisceral patients, some of them have been hospitalized almost their entire life since they were born. If they were born prematurely and they get transplanted when they’re 11 or 12 months old, they’ve been in the hospital their whole life, so in and of itself, that they can go home is a huge change!
Emily Holman, MSW, LICSW, Social Worker, Multivisceral Transplant Program
Communicating with primary care providers
We have a letter to the pediatrician and the primary cardiologist with every visit, and with discharge they also all get our new Heart Transplant Protocol Book for Referring Physicians, which has all the information that the pediatricians and cardiologists would need to know in emergencies and even in routine care – immunizations, what to do, what medicines they can and can’t have for their ear infections and their broken arms and the regular things that all kids would get. So it’s a team, they are part of the team, and we couldn’t do it without the local pediatricians and cardiologists! Our nurses also have a back-to-school packet for the school nurses.
Elizabeth Blume, MD, Medical Director, Heart Transplant Program
If our patients do have mental health providers, we communicate a lot with the providers themselves. With the parents’ permission, we’ll speak to them as much as needed to keep everybody up to date on what is going on medically with the child, any other issues that have come up to be worked on in therapy, and any other services that need to be put into place to help them be as successful as possible.
We also tend to contact the schools a lot, especially if there are special learning needs. Those are very common in the transplant population. They can come up pre-transplant, because end-stage organ failure can lead to some cognitive complications, and pre-existing conditions can cause learning needs as well. Then sometimes, unfortunately, if the transplant course is very difficult, they may have experienced some medical complication that may also affect cognitive functioning. This may not always be long-term, but children and adolescents may need some services in the meantime. We work a lot with the school systems to try to put supports into place as they’re needed.
Melisa Oliva, PsyD, Transplant Psychologist
We try and leave all primary care issues to the pediatrician, but it’s very hard for families to transition from hearing our voices and us managing everything in very early post-op to then saying, “It’s okay to go to the pediatrician for a fever, or if they have ear pain, or if they have a throat infection.” So we talk to the pediatricians a lot!
Courtney Fratto, RN, MSN, CPNP, Transplant Coordinator, Multivisceral and Liver Transplant Programs