 |
    |
Questions Before Transplant
Is Transplant a Treatment or a Cure? When parents ask whether a heart transplant is a cure or a temporary fix for their child’s heart problem, we let them know that it’s a fix for their heart, that they do have a brand new heart, but that it comes along with other things that they didn’t have to deal with before. For instance, we have to make sure that the child’s body doesn’t reject the new heart and that it accepts it, so there are going to be all kinds of medications that the child needs to be on. And we tell them how important those medications are. So it’s not a cure in the sense that you get a new heart and then go off on your merry way; there are biopsies that the child needs to have done, there are follow-up visits, there is medication, and there are certain things that the child can no longer do, such as heavy-duty contact sports like football. You will also want to avoid large crowds of people, especially immediately post-transplant. So there are certain things that need to be done. Beth Donegan-Driscoll, Child Life Specialist
I always get a lot of questions about the incision- what is it going to look like, is it going to be a big scar, and how long will it take to heal. Those can be tough questions, because it really just depends on the patient- sometimes the incision takes a week to heal, sometimes it takes a few weeks to heal; sometimes the scars are small, sometimes they’re really big. I once had a patient who asked if she could have some kind of plastic surgery procedure to remove the scars. So school-age kids are really concerned about those body image issues. Jamie Smart, Cardiology Staff Nurse II
Conflicting Emotions About Transplant I think one very difficult thing is that adults know where their child’s new heart comes from. They know that the worst day of another parent’s life is going to be the day they’ll celebrate. I think that there are all of these conflicting emotions for parents, because their worst nightmare is happening to another family, and they feel as though they almost wished for it to happen. And we really need to tell them that this was going to happen, whether they needed a heart or not, and that for them to get this gift out of somebody else’s tragedy is sometimes what keeps the other family going. Because now they know that through their tragedy a miracle happened. I think that there are just such conflicting emotions for parents about this, and it is so difficult for them to want this to happen for their child. We need to explain to them that it’s not that they want this to happen to somebody else’s family; they just want their child to be well and to live. And there is nothing wrong with that; that is just how it works. It’s hard- it’s very hard. No one can take that away, but we can understand and we can give support. Beth Donegan-Driscoll, Child Life Specialist
Information Before and After Transplant How much information do children really absorb prior to transplant? These kids hear so much information. I think it’s not until after transplant that they are really living it and absorbing all that could happen in terms of transplant-related complications. And now this is really in front of them. I think they thought that their illness would be completely over and done with. And when transplant-related complications come up, they’re kind of shocked or disheartened by it and don’t know how to deal with it. Emily Trombly, Lung Transplant Coordinator
Quality of Life Before and After Transplant I think one of the major things the transplant team does pre-transplant is to convey to families that the transplant is not a cure for whatever the patient has. Instead you are swapping one group of symptoms and problems for another group of issues and potential problems, but with better quality of life. It’s important to understand that it’s not a free thing. There are other problems, such as infections and cancers, which could potentially occur after transplant. We try to emphasize to people how frequently they’re going to be in the hospital for the first six months, and that we’ll see them forever. Those are the biggest things. John Fantegrossi, Heart Transplant Coordinator
Questions Before Heart Transplant The first question that most parents ask before transplant is “Does the heart grow with them?” If we are transplanting a baby, the parents want to know if he will need another transplant years down the road. I think a lot of parents and kids are surprised that the heart does grow with them. The younger school age kids always ask, “How are you going to get the heart in?” And over a period of time we tell them that they’ll be asleep, they won’t even have to worry about it, and we’ll just put the heart in through their chest and when they wake up they’ll have their new heart. It’s accurate and fairly simple, but it’s true, and it’s amazing how well kids can deal with that information. Eventually, after some of the older kids and some of the parents have thought about all of this for a while, they ask us, “How long does the heart last?” I think that right now, with all of the new medications coming down the road, that is a hard question to answer. We have data from the last 15 years that will tell us what the percentages are and how long hearts have lasted, but I think that in the long run, to be honest, the real answer is, “We just don’t know.” If we do a transplant now, will this heart still be beating 25 years from now? Chances are it very well could be, assuming that everybody follows their recommended regimen of taking medications. John Fantegrossi, Heart Transplant Coordinator
Will My Child Have a Normal Life? When parents ask, “Will my child have a normal life?” I tell them that the majority of our patients survive, and that they usually survive to normal life expectancies. They should be able to bear children, go to school and to work, move out of their parents’ homes, get married, and do all of those other things that parents of three-month-olds think about. Laura Krawczuk, Liver Transplant Coordinator
The renal transplant patients I work with as a dietician always ask me, “What can I eat?” People have that kind of approach to the issue, but I remember that initially it was so much easier for me to tell people what they couldn’t have to eat than it was to tell them what they could have to eat. From the practitioner’s point of view, believe it or not, there were more things that they could eat than that they couldn’t eat, so I always thought it would be a lot easier just to give them a list of things that they couldn’t eat. But that may not be the best approach, because it sets people up to focus on the negative side. So the system I have developed is to talk through a normal day for the patient and discuss what they usually like to eat and how this would work with their renal diet. I don’t ever like to say no to certain foods, even if they would ordinarily be on the list of items for these patients to avoid, because it is really a matter of how can it work into their diet. On the other hand, in the case of the renal patients, not following the diet could be life threatening. If someone were not compliant with the general guidelines of the diet, they could face very significant medical issues. So we have to be able to instill in these patients a respect for the diet but also develop a diet that is realistic in terms of how well they can follow it outside the hospital. It really is a challenge to do that. I try to focus on how we can keep foods from the person’s usual diet intact in their diet therapy, and at the same time make sure they are mindful of the things that we really have to be a bit more careful about. Nancy Spinozzi, RD, Renal Dietician
One of the things that I like to tell parents when I see them is that it’s really a team that’s caring for their child, and they’re a part of the team, and the child is part of the team too. Their concerns, their fears, their interpretations of situations and their gut feelings are all very important to the team. It’s just not one person that manages the complexities of this type of disease, but it’s many of us. Part of the role that I see for myself sometimes is being like a cheerleader on a cheerleading squad, rallying for them to move forward, to create that level of wholeness and wellness for them and their child. That’s how I really want them to envision me, the coordinator. And I want them to know that it’s really a whole team that’s behind them and they’re part of it. Patricia Glidden, Kidney Transplant Coordinator
Parents sometimes want to know about the scar, but we tell them that everyone heals differently; it’s really genetic. For a little tiny baby, we’ll make a little tiny incision, but as babies grow, the scars do grow proportionally. Frank Pigula, MD, Cardiovascular Surgeon
Family Questions About the Surgery We interact and get involved with families mostly after their donors have been identified and once we’re preparing for the transplant. Every family is different: some families want to know and talk about everything about transplantation; they want to know everything about the operation: how we do the surgery, how long is the operation, how long is the heart out of a body, etc. Some families and some children don’t want to know anything about it. I will take my lead from them in terms of how specific I get, and try to tailor it to them. Frank Pigula, MD, Cardiovascular Surgeon
Questions About Transplant Surgery Some specific questions from patients themselves are: what does the operation involve? Am I going to feel things? Is it going to hurt? Where are the incisions going to be? After the operations, am I going to be sore? I tell them that the operation itself is done under general anesthesia, so patients don’t feel anything while the operation is being conducted, but afterwards they’re going to be sore, so we work together with them to try and control that pain. As we get farther away from the surgery and transplant, the pain gets better and decreases as they take their medications. Craig Lillehei, MD, Transplant Surgeon
One of the things I do is pre-transplant evaluation. Patients are referred to us, and we meet with them and provide them with information about transplant and what it entails. Then, if it sounds like something they’re interested in, they proceed to evaluation, which is a multi-specialty process. It’s not really to weed people out and say, “You’re a good candidate” or, “You’re a bad candidate.” It’s designed to try to make each patient the best candidate they can be, in the best shape they can be. Then we bring them back, review all the fine points from the evaluation and make a decision about whether or not to put them on the list. And if we put them on the list we send them to the lung transplant clinic, to be seen about every two months, at first. David Waltz, MD, Physician, Lung Transplant Program
Talking to Families About Transplant The lung transplants we do here are called cadaveric transplants, so it’s obviously a child that has died, or an adult or teenager, and the way we explain it to families is, “If you think about it, these are people that have died anyway. It’s not like you willed them to die or anything. Their family chose to give you a gift- multiple gifts if they donate multiple organs and help multiple people.” It’s a way to think about it, because it is hard for families to think, “I’m sitting here waiting for someone to die so my child can get a transplant.” It’s hard, especially for kids to grasp that you’re actually getting lungs from somebody else. Debra Boyer, MD, Physician, Lung Transplant Program
Even before the transplant, people want to know what to expect. I think the thing that we emphasize is that it’s not a cure. We describe it as exchanging one disease for another. They won’t have the disease that they had before transplant, but they will have transplanted lungs, and that means that they could get rejection or infection of the lungs and they need very careful surveillance. That’s why we need to do what we call a bronchoscopy, where we look in the lungs, get samples of blood and tissue and look for signs of infection or rejection. Parents often ask about what the process entails, and how often they have to come back. We tell them that we do have a general standard, but that everybody’s different. Some people have a lot more problems and need to come back more frequently, and some people do very well and need to come back only the minimum number of times. One of the things we emphasize is that transplant can’t be thought of as an easy fix. Some people think they’ll come in and get a lung transplant and then they’ll be perfectly fine and never have any problems. We do have patients who are three or four years out, and back in college, doing fine, feeling great, and doing everything they want to do. But we also have patients who are starting to become as sick as they were before the transplant, due to complications. So people should know that it’s not something to go into lightly, because they don’t know where their child is going to fall in that spectrum. I think most parents understand that. But it’s not an easy trail in that you take medications and it requires a lot of work. The flipside is that a good portion of the kids can be more functional than they were before. Debra Boyer, MD, Physician, Lung Transplant Program
Questions Before Heart Transplant Some questions that a lot of parents have are, “Can my kid ever be normal in school again? Can they go to college? Can they get a job? Will they be cut off from their insurance? Will they be discriminated against?” I think that a lot of parents will jump ahead to those questions, especially parents who had a previously healthy child. In that way, these families are different from those in which a child was diagnosed with a heart defect prenatally; those families have been dealing with the heart condition that culminated in this transplant for years. Sometimes families in which the child had a more sudden need for the transplant are blindsided by this. Parents also want to know about the physical changes in the kids afterwards, and their appearance, especially with our teenage boys and girls. In general, they want to know, “Will this work? How long will it work for? Will my kid die? Would you do this if it were you kid?” It is different with every family. I often try to get parents to talk to other parents because I think that is the only way you can know how this really is. I also tell people that these kids are going to be able to do a lot of things that they wouldn’t have been able to do, and a lot of things that they want to do. They’ll be able to play a lot of sports, go to college, etc. We have a picnic every year, and after you’ve had a transplant, you’re invited to the picnic, with the other transplant families. Most of the time, when you look out over the group there, you can’t pick out who has had a transplant and who hasn’t. It is a nice way to see how well kids can do after this. Ann Rounseville, LICSW, Heart Transplant Social Worker
Parents are interested in a few different things, one of which is quality of life before the transplant. I’ve found that many parents are worried that we’ll wait too long and that their children will be too sick. We have to reassure them about that, and we tell them that we work very hard to get the timing as close as possible to the right time so that the child still has enough strength and enough health to get through the transplant but also really needs the transplant. Parents worry about timing of the transplant, and they’re always worried, appropriately so, about moving onto the transplant list, and what that means for them. On the other hand, they’re worried about the child getting too sick, and they wonder, “How long do I have to wait? What if one doesn’t come in time? What if my child gets too sick?” Those are very common and understandable questions. Fortunately, the donor allocation system, as it’s called, does take all of that into account, and if someone does get much sicker, they do get a higher priority for an organ, so we can put to rest some of the family’s fears about that. Some parents ask about being living donors, and if there is any benefit to that. We usually tell them that the benefit is that you can plan the operation, which is not a bad thing if you don’t want that phone call in the night or on a holiday weekend. But being a liver donor can be dangerous. We tell them a lot about the concerns and the safety of the donor. We do living donations, but it’s really our last resort, because then we have two patients instead of one. Being a liver donor can have complications, and sometimes the family members are necessary to take care of the children. It’s a last resort, but it’s something that we have, and if we’re not getting a good donor, then we can consider going with that. Maureen Jonas, MD, Physician, Liver Transplant Program
Parent and Child Questions About Heart Transplant The biggest question that I get before transplant is, “How long will the heart last?” Unfortunately, it is one of the hardest questions to answer, because we don’t know. We’ve only been doing this for seventeen years, so we can’t give them much more than statistics for those seventeen years. The other big question is, “Where does the heart come from?” We feel really strongly about confidentiality on both sides: the donor and the recipient. Some families immediately understand. The way I explain it to them is that there is confidentiality on the recipient’s side, so that organ banks and organ donors know only a minimal amount of information about the recipient, and so in the reverse, the recipient family only knows minimal information about the donor. Some families have a very easy time accepting that, and others just really want to know because their thoughts of where it came from can be overwhelming. There is an opportunity to write to the donor family, which is pseudo-anonymous- first names can be used but not last names, and no truly identifying information can be given, so that you can say what state you’re from but not what city. Many of the recipient families will write a letter at some point during that first year, and the donor family can write at any time as well. A lot of families have found peace in that, even if they don’t get any more new information from it. It’s a tangible way to be connected to each other. However, some never want to know anything, which is fine. Kids don’t ask that many questions before, but we actually require school-age children and adolescents to ask one question a day, because we want them to start thinking about it. It can be as simple as, “What color is the medicine? What time do I have to take the medicine?” Or, “What is life like after transplant? What is a biopsy?” We’ve found it’s actually a really good way to open up the lines of communication, because we’re with these families all the time. Kids will often start off by asking questions like, “What color are the pills? Can I see one?” But then they start to ask real questions, like, “What will I feel like? Will I not love my mother anymore?” Because some kids think that their feelings are in their heart. Recently, right before one of my patients’ transplants, she asked, “What is going on when my old heart is out and my new heart is not in yet?” I explained to her that there is a very sophisticated machine in the operating room that works as your heart until the new one is in place. This patient was really worried about that, and it is not always something that is explained to children, but there is going to be a minute or two when there is no heart in the patient’s body. A lot of kids ask, “Can I see my heart after?” But their thoughts of what a heart looks like and what a heart actually looks like are very different. So often what we do is to show them a chest x-ray before, when their hearts are enormous and swollen, and then after the transplant, we show them a chest x-ray with their new heart that is not swollen and enlarged anymore but normal-sized. That is something very pragmatic that kids can to see: the change. Some have even brought the pictures to their schools and showed others what their new heart looks like. Heather Bastardi, RN, PNP, Heart Transplant Coordinator
Whatever the experience of the illness, the patient and family usually have a need to try to understand it. Questions like “Why did this happen?” “Why is my child suffering?” are attempts to try to make sense out of what does not seem to make sense and to make meaning about what has happened. Even though there is no simple answer, having an opportunity to talk about these issues and the strong feelings they carry with them with a counselor or clergy person, or reading a book such as Harold Kushner’s When Bad Things Happen to Good People can provide opportunities to get much needed empathy, support, some insight and perspective. One of the things that people often learn is that they have remarkable resilience and strength, more than they would ever have known. Often people with chronic illnesses become trapped and “invalidated”- not necessarily by the disease itself but by the power of their beliefs about it. Treatments for renal failure can at times be difficult, constricting and scary, but the will to live and to be normal, especially in children, is so strong that it is often stronger than what they have to endure. Helping patients and families to identify strengths such as a fighting spirit, resourcefulness, ability to take responsibility for their or their child’s health, motivation, and determination to live as normally as possible, to finish school, etc. can be a profound way of helping them to feel successful and accomplished- despite the ups and downs of coping with chronic illness. Roberta Hoffman, LICSW, Kidney Transplant Social Worker |
 |
Copyright © 2005, Children's
Hospital Boston Department of Psychiatry. All Rights Reserved. The information on this website should not be taken as medical advice, which can only be given to you by your personal health care professional. July 26, 2005 |
 |