Getting back to normal
Overall the goal is to achieve normal childhood and get kids back to their normal routines as quickly as possible and as safely as possible. Sometimes that’s not possible, depending on what the situation is, but in the absence of major complications, children are usually back to fairly normal life in three months. Obviously they have to come see us on a regular basis, but assuming there are no issues with rejection or infectious problems long term, they tend to have a fairly good, normal childhood, and they can grow and develop. Those are the things we are working on now, improving that kind of stuff.
Heung Bae Kim, MD, Surgical Director for Liver, Intestine, and Kidney Transplant Programs, Director of the Pediatric Transplant Center
Encouraging caution
If everything goes well, we expect them to lead as normal a life as possible. We expect them to go to school, go to work, go outside and play with other kids. There are certain things that they will always have to be cautious about: we don’t like them to go to petting zoos, we have some restrictions around certain animals for pets, there are certain foods that they should avoid – basically things revolved around infection. They’re always going to be at risk for infection, so they always have to carry Purell. They shouldn’t be around sick people whenever possible – but saying that, we want them to lead as normal a life as possible, so there’s give and take there. They still have to do their monitoring forever. The medication is always going to be a piece of what they have to do, and our patients will always need to take their immunosuppressant medications. They tend to get in a routine with them, and it really ends up being okay for most patients.
Adolescents tend to have the toughest time going through transplant, especially if you take a sick CF patient who may have been very debilitated going into transplant and not able to do a lot – now they can do a lot, so some of those kids tend to go overboard and overdo things, and we have to pull back on them a bit. And adolescents feel like that nothing bad can happen to them, so they tend to be the worst at taking care of themselves. And the majority of our patients are adolescents!
Dawn Freiberger, RN, MSN, Lung Transplant Program
Getting through the bumps
Multivisceral transplant alone is a huge undertaking. It’s not a little surgery, it’s a huge surgery! We describe it to patients as taking a set of problems that they had before, and adding in a whole new set of problems. It’s a new type of transplant that the literature out there is developing, that we’re developing our protocols here. It can be a very bumpy road, but if you can get through the bumpy road and see the light at the end of the tunnel, there is a time where they can be off of parenteral nutrition, they can have their central lines removed, and they can grow and develop as normal kids.
Courtney Fratto, RN, MSN, CPNP, Transplant Coordinator, Multivisceral and Liver Transplant Programs
Adjusting to recovery
Hopefully they have a healthier child than when they came in: the cancer is gone or the sick liver is gone, and the child’s actually less disabled than before the transplant. In the short-term, they have to adjust to post-operative recovery as function returns, as disability gets better, and as the child resumes a more normal life. Most kids go back to school about six weeks after their transplant.
Then there’s a different adjustment: they have to adjust to having a healthier child doing healthier child things, with a little bit of increased risk of infection from the immunosuppression. There will be relatively frequent blood tests at the beginning, frequent trips to the transplant center for adjustments of medication and so forth – but they will eventually return to a more normal life with their child.
Maureen Jonas, MD, Medical Director, Liver Transplant Program
More common than you think
I would say that transplant – although it’s a big, scary word – is probably more common than you think. It’s not an everyday occurrence, but there are lots of people who have them. Also, depending on how old the parents are, the idea of transplant from 10, 15, 20 years ago, might sound really, really scary to them, but things have changed a lot. Outcomes are better and procedures are better, so I think the likelihood of a good outcome and a good quality of life after transplant is much better now than it was twenty years ago. And in this day and age it’s great because you can get in touch with other families who’ve had it done; you don’t have to feel isolated in your little town where no one has ever had a liver transplant. You can go online and you can find people all over the country who’ve had a liver transplant, and so it really helps normalize that experience.
Emily Holman, MSW, LICSW, Social Worker, Multivisceral Transplant Program