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Life After Transplant
Returning to a Normal Life After Transplant My goal, and I think the goal of this whole nephrology program, is to normalize our patients’ lives as soon as possible. If they want to go back to school soon after their transplant, they can. And we don’t really limit them. It’s all based on how well they are feeling. I saw someone go back to high school three weeks after his transplant surgery, which is remarkable. We’ve had other kids who have no interest in going back and really don’t make that effort, which is probably the bigger downfall for us. I like to encourage kids to participate in gym and other extracurricular activities. They say no ice hockey or tackle football, but we’ve had patients play those sports too. For the most part, I’m excited when somebody wants to participate in a sport. We don’t have kids wear masks; we don’t have kids do anything that would outwardly show that they have a transplant. They’re really not so immunosuppressed that they would need that kind of protection. Instead, I focus on counseling them on being smart about what they’re eating and about washing their hands, and I provide healthy guidelines for them and for their families about these things. Greta Feinberg, Nurse Practitioner, Renal Program
Seeing a Primary Care Doctor After Transplant All of the patients that we see post-transplant see other providers as well. They may see endocrine because they’ve been diagnosed with diabetes. Or they may see somebody in cardiology or neurology or nephrology. And a lot of the times they’ll say, “Please don’t add on another doctor! Why do I have to go to another doctor?” They get so frustrated and tired of going to one provider after another. I think they thought that after the transplant that was it- that they wouldn’t need to see anyone but us. They will say, “We don’t need to see a primary care doctor, because we have you guys to do that for us!” And it’s very hard for us to get them to go to one. But I try to make them understand that we’re not their primary care doctor. So I do a lot of encouragement, and eventually I get through to people and they find a primary care doctor for me. When they do, I think that they’re glad that they have, but it takes a lot of encouragement to add that extra doctor on. Emily Trombly, Lung Transplant Coordinator
Patients have an enormous amount of anxiety about what will happen when they get a biopsy. Even patients that are five years post-transplant still have that anxiety about what will happen if a bronchoscopy shows rejection. I think you always live with that, no matter how far out you are from transplant. Emily Trombly, Lung Transplant Coordinator
In some ways, with transplant you are trading one problem for another, because you still have to take medications, and you still run the risk of rejection and future hospitalizations afterwards. Some of the kids do really well; they go home and we hardly ever see them again. But there are some kids who come back constantly after transplant, and I think families just need to be aware that it’s not a cure. Transplant extends the child’s life, but there are certain things that go along with it. One thing that I think would help a lot of the parents is to have other parents who have gone through this process available for them to talk to. That way, they could let them know what to expect and how their child did, and be able to say, “Yes, we hit this bump in the road, but we got through it.” Maura Harlen, Cardiology Staff Nurse I
For the most part I would say that medically the kids do very well after transplant. There may be a few blips on the screen for some of the kids. For instance, if someone who has had a heart transplant gets chicken pox it can be a somewhat big deal because they are immunosuppressed. But overall what I have found surprising is just how involved the transplant team gets into the non-medical aspects of these families’ lives after transplant. For instance, there can be issues at school because a school is apprehensive about taking someone back after a heart transplant. And sometimes when schools do take these kids back, we need to work with them on how to deal with them and when to call someone. There can be a lot of concern, apprehension and stress on the school’s part, so I think school is one of the bigger issues we encounter post-transplant. Sometimes we get involved when families are having problems with insurance companies as well. So there are always these sorts of issues that come up. It is not so much the medical life and death issues that people face day in and day out after transplant, although we do have those, but more often than not it’s the little stuff that is usually more frustrating. John Fantegrossi, Heart Transplant Coordinator
Heart transplants do really make a difference in children’s lives. It’s not perfect and not a cure, people are still searching for those things, but we have this today, and kids can become much more active and do things that a regular five, seven or ten year old kid can do, whereas before, they couldn’t go outside and play. Frank Pigula, MD, Cardiovascular Surgeon
Thinking About Lung Transplant There was this one patient who had developed chronic rejection. We tried treating her with a couple different methods of treatment and nothing was working. We had basically decided that nothing was going to work, so she went into hospice care. She was Jewish, so a rabbi came by and was doing a spiritual intake of sorts. He was talking to somebody in the room and she wasn’t paying much attention. He started saying something to her father or mother about how he knew that transplant was a long struggle, and he could understand… And she sort of jumped up from her bed and said, “Well I’m very glad that I was able to do this, and have the opportunity to go through this. I don’t think you really understand what it was like to have this chance and this opportunity.” And she went on for about 20 minutes about how important this had been for her. The rabbi was really taken aback. But that was her reaffirmation that even though lung transplant doesn’t always work, she still thought it was worth trying. David Waltz, MD, Physician, Lung Transplant Program
Light at the End of the Tunnel We tell parents that the first few months after the transplant are the hairiest in terms of the number of doctor’s visits and medications, and the possibility of complications. But after a year, many of the patients have a normal lifestyle: they’re going away to college, playing sports, and certainly patients can have healthy children and so forth down the road. I always tell them that there is a light at the end of the tunnel: a normal life. If you can get through the first month to a year, it will get pretty decent. Maureen Jonas, MD, Physician, Liver Transplant Program
The First Three Months After Transplant The three-month period after transplant is when I always warn families that things will really start to hit them. That is when we’ve started to back away and the frequency of their visits has decreased so that they’re not as tied to us, and we are certainly seeing them frequently but not every week anymore. Their kids are starting to get back into their daily routine, into school, and into their peer groups, which can change. It’s at this time that siblings have sort of relaxed and start to act out because life is supposedly back to normal, but it’s this new normal that everyone must adjust to. It’s very important to make sure that there is social work involved and possibly psych help also. This is also the time when kids are most likely to have a rejection, so it’s a really critical time. Heather Bastardi, RN, PNP, Heart Transplant Coordinator
The First Year After Transplant The biggest early bumps that we see are rejections and infections. We tell the families to expect an episode of rejection or infection, certainly in that first year. That’s the time when we’re balancing our anti-rejection medicines. Our goal for all of this is to give them the least amount of medicines that we can to in order to prevent rejection. We start out with big amounts of medicines and go all the way down to smaller amounts. We explain that before, and then with each of the first clinic visits we explain it again because we have biopsy results and drugs results and we make changes based on those. We tell them that because we’re changing their meds, we have to do a biopsy in another week because we have to see what the body’s response to the change is. There are kids who don’t have any bumps in the road, but I think that 95% have at least one bump in their first year after transplant. After the first year, we see the kids every three months and then every six months. Things really start to spread out and normalize; we never let our guard down because something could always go on, but it’s really at this time that families get back to their norm and start to feel like they are really living their own lives again. Heather Bastardi, RN, PNP, Heart Transplant Coordinator |
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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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