Prevent Kidney Disease
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By Rebecca Hays, MSW
When a family member gets a transplant, the whole family is affected, even if they don't all show it. Everyone has questions about how a transplant will affect their own life and the patient's life, as well as future plans. If a parent gets a transplant, children have questions too. Some children are outspoken and ask lots of questions, while others may be quieter or afraid of the answers. These are some thoughts about opening up the lines of communication between parents and children of all ages. Of course, your child's questions and concerns will vary, depending on lots of things, including:
Thinking about the transplant, and your health, isn't a conversation that happens onceâ€”new questions and topics will continue to crop up over time.
Most experts agree that it is important to answer your child's questions honestly, without reading too much into them or giving more information than asked for. If you are looking for more support in talking with your child, you may be able to check in with your transplant social worker, transplant coordinator, your child's teacher, pediatrician, or a school counselor. As a rule of thumb, your child's needs change as they age. If your child is:
Your child's questions may surprise you, partly because they may ask them in a public restroom, or when you are late for church. Some educators call these “magic learning moments,” and suggest that if possible we jump on them. Little kids don't know when it is a good time to talk. Teens may be asserting some power in when they are open with you, and these moments may be few and far between. When in this situation, I suggest you find a way to sit down, make eye contact, express pleasure they asked, and offer a quick, open answer. If they're little, that may do it. If they're school-age or older, ask them when you could talk about it again.
Your child's questions may also surprise you because kids' questions get right to the core. They may get you thinking about your own transplant adjustment, and changing family role, in a new way. They may get you searching for accurate information yourself.
Some background framing:
The following questions are a few examples of concerns a child might have. The questions included may also help you begin a discussion with the child about life after transplant. The answers provided are just examples. Naturally, the words you use are up to you and depend on your child's age and understanding.
It's true that I will need to care for myself, and the transplant, for a long time. How much time that takes will change. There are lots of things I can do to try to stay healthy. There's a whole team of people at the transplant center and at my doctor's office to help me with that. We can do some things as a family to make it better too, and to figure out how to fit the transplant into everything else that's important, like your school, grandma's birthday party, or my job.
We need to let everyone have his/her own way of handling the worry. Some people may be angry, some sad, some may want to be by themselves, and some people may want to talk about it. Each person has his/her own way, and each way is okay.
The doctor and the blood tests help track how my new organ is doing. That helps me take good care of myself so I can stay as healthy as possible.
To help the new organ keep working, I must take medication every day. (At this point, especially for older kids, you may want to share the tools you use to keep track of your medicineâ€”when to take it, what it isâ€¦the list on the fridge, the meds box, the alarm on your watchâ€”whatever helps you stay organized.)
In a funny way, transplant is all about tricking my body into not noticing there's a new organ in there. Otherwise, my body might treat the new organ like a germ. My transplant medicine helps â€˜fool' my body into not noticing there's someone else's organ in there!
Remember, kids ask the questions adults have learned to studiously avoid!
My medicine has what are sometimes called â€˜side effects'. While my medicine works to keep my transplant going, it may also make my tummy upset, or give me a rash. Sometimes the doctor can then give me other medicine to help with that.
I will have to see my doctor often to have my blood checked. If there is a problem, I might have to go back to the hospital for a few days to fix the problem.
Because of my illness, there may be times I can't do all of the things I would like to do. We need to work together to keep our family running smoothly. Each of us will have to learn new jobs, and each of us can do things to help. Like helping with the pets, cutting the grass, bringing in the groceries, or staying with a neighbor sometimes after school if I can't be there because of a doctor's appointment.
I'm not going to die tomorrow or anytime soon, and I hope I will live for a very long time. But everyone dies sometime, so yes, sometime I will die. I am making changes in the way I live, to help me stay alive longer. (If they ask follow-up questions, you may want to say something like “I may not live as long as if I did not have this disease”.)
If I am in a bad mood sometimes, it is not your fault. It does not mean that I don't love you anymore. There are many reasons why I may feel "down" sometimes, or am distracted.