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Ways of Coping
Coping with the Transplant Process Use us [the hospital clinicians] as a resource if you have questions. If you need emotional support, we can certainly help you deal with this process. Use family and friends as your supports as well. Lung transplant is a difficult decision, and I admire families who can go through the whole process, accept it, move on from it and do well; they really have courage. And the recipients themselves accept the challenges they’re faced with and step up to them, do well, and have that hope and faith that they’re going to get through it and they’re going to do well. I really just learn from the families. Every family’s so different, everybody deals with these types of illnesses in a different way, but all of them have the same goals: they all want their children to be healthier or have a longer life than they would have. And I think that you can really learn a lot from families and how they deal with things. Emily Trombly, Lung Transplant Coordinator
I think families that are really well organized do better in the transplant process, because there’s a lot to keep track of. Parents who know how to set limits for their children also do well. If parents have no concept of limit-setting and their child is just catered to, I think it can eventually be to the child’s detriment. Parents, families, and patients that really can seek out information and self-start also do better. Some people lose that ability, but the families that do best really have that drive and have the attitude that having a child with chronic kidney disease and a transplant is not their entire life, even though it has, of course, changed their life. I think the attitude that they can move on from it is not something people necessarily can verbalize, but an attitude that some parents and children have learned, and one that helps them do better. There are people who just don’t have that ability to see outside of the chronic illness, and it is hard because I think psychologically the experience post-transplant is one of the toughest situations a person can be in. Somebody has just gotten a transplant, and it’s a ticking time bomb; you don’t know how long it’s going to last, you know it’s not going to last forever, and you know that rejection or illness could take the life off of that transplant and that you could end up in the hospital any day, but at the same time the transplant team is telling you, “Go out, be normal, go to school, don’t worry about it!” I have parents who call me for all of their lab results, all of the time, even though their children are the most stable patients who have been 15 years out of transplant. But parents cling to these numbers, because they know that at the drop of a hat, it can change. Greta Feinberg, Nurse Practitioner, Renal Program
Adjusting to the Idea of Heart Transplant I think that the families I’ve seen struggle the most are the families in which the child had cardiomyopathy, a very sudden reason for a transplant. Some children who need transplants have been sick almost their entire lives; they have had different surgeries to try to correct their heart ailment before, and now we’re talking transplant after those options have been exhausted. I think from day one the parents of those children knew that transplant was a possibility. It isn’t that they have an easy time, but from what I’ve seen they have an easier time than a child who at twelve years old contracted cardiomyopathy. Because with those children, you are all of a sudden talking about transplant with the family of a very well child who has no history of even being hospitalized or sick. So the family needs to adjust to the hospital routine, to the hospital environment, to the terminology, and to the fact that their child needs a new heart, all at once. So it can be harder for those families. Beth Donegan-Driscoll, Child Life Specialist
Support at Home and in the Community I think it’s pretty obvious that those children who have a lot of good support at home, whether it’s from parents or some sort of caregivers, do much, much better. And that’s why we try to work with the total family, the total unit. And also include the school and include friends, and really encourage people to bring their extended family members into conversations and in to the dialysis unit, to the clinic and so forth, so that they can really get an appreciation for what the child is going through and that it really isn’t a scary kind of thing; it’s something that should just hopefully be supported by everybody. And if the child feels supported, then they tend to do better. Nancy Spinozzi, RD, Renal Dietician
I think that unfortunately, as is usually the case with sick children, there is a tendency on the part of families and friends and extended relatives to kind of spoil the child. And so if limits aren’t placed on children, then dietary restrictions and the necessity to follow a certain pattern of eating becomes hard to enforce. Nancy Spinozzi, RD, Renal Dietician
I think the family support system, their friends and relatives, are very important, and the more normal a lifestyle that the child can maintain, the better. So if the child is going to school, has some friends and some activities on the outside, that’s really important. Nancy Spinozzi, RD, Renal Dietician
Monitoring Oneself After Transplant The patients who don’t do as well after transplant are the ones who get really excited afterwards and will say to you that they’ll do everything you ask them to at home- heart rate and blood pressure and everything else- and then come in a month out, and tell you that they’re not doing anything anymore. They will say, “Oh, I’m fine- I don’t really need to do it.” Or, “We really haven’t been; I’ve been skipping it.” They have all of this newfound energy after transplant and they want to be out doing things rather than doing the medical tasks that we ask them to. I think they almost feel that that part of their lives is behind them now and there is a whole new life ahead. I can’t blame them for it, because they come so close to their demise, and then all of a sudden they have this new life, with new lungs and the ability to breathe like you’ve never been able to breathe before. That’s really exciting for them, but they still need to monitor themselves. Emily Trombly, Lung Transplant Coordinator
I meet patients and families when they begin the evaluation to be listed for lung transplant. We try to understand how the family has coped with illness and may, potentially, cope with the waiting period and the transplant. The better we understand who the various family members are and how they have managed in the past the more we can help them through the difficulties that are inherent in lung transplant. We’d like patients or families to decide about transplant with as full an understanding as possible about what this may be like for the patient and the family. Many of the lung transplant patients are young adults. It’s helpful to get to know the families because the adult patients look to their families for support but the relationships change as the patient grows up. As a child the parent is making many of the decisions but this is shifting as the patient grows up. Lynne Helfand, LICSW, Lung Transplant Social Worker
One of the things we talk about is that especially with cystic fibrosis, denial is an important defense mechanism. People have to be able to wake up in the morning and say to themselves, “I’m not coughing that much, I’m not bringing up that much, so I can go to work today, I can go to school, and I can do the things that I do. I don’t really feel that bad, so I can wait until next week or next month when I see the doctor again.” It’s important for them to be able to get on with their lives and function. Sometimes, obviously, they have to pay attention to those things and call us. But after transplant, they really have to pay attention to every little thing that happens. So if they get a little bit of a cough, or if they get a little fever, they need to call us immediately, because that could be a sign of rejection or infection- things that we would need to diagnose and treat as soon as possible. That’s a big change for a lot of our families- the transition from denial being a healthy defense mechanism to denial being the enemy. David Waltz, MD, Physician, Lung Transplant Program
Suggestions for Parents Before the Transplant If you can, pay all of your bills beforehand so you don’t have to deal with them while you’re in the hospital. I tell families concrete things like that once they have been listed. Anything that you can do to take away some of the day-to-day worry is a good thing! But that only applies for families who are waiting at home. Also limit phone calls and access, because the last thing that parents want to do is to take care of other people. People are always scared of sick kids, and to explain this five thousand times is the last thing that a parent wants to do. If a child comes in emergently, you could try having a sister or a best friend take your address book, just call some people, and say, “So and so is critically ill, and this is what the plan is.” Often, parents make their own websites and say refer to that, but please don’t call. I think that being inundated with phone calls and having to explain the story over and over again is just really difficult. Ann Rounseville, LICSW, Heart Transplant Social Worker |
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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 |
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