transplant key


transplant_liver_green We’re trying to help him be 100% responsible for his medication, because he only has four more years left of school at home. So what we want is for him to really be so used to the habit of setting his meds every week and knowing when to order new ones and taking his medication on time that when he does want to go away to college he’ll be able to keep up the routine.


Mother of David, 15



transplant_liver_green We really empower him
What we do is really encourage him to speak up for himself, have him be the person who signs himself in and who tells the phlebotomist where’s the best place to stick him…and, you know, really empower him when he doesn’t agree with the treatment plan to say something! The last time he was in the hospital, he had ended up with an infection in his PICC Line, and they wanted to treat him with a particular course of medication. It was going to require him having to stay in the hospital extra time, and he asked the doctor himself if there was an alternative. And the doctor said, “Well, actually yes, there is this alternative, and these are the reasons why we haven’t suggested it.” And David said, “Well, we’ve done this before, and we can certainly manage this at home, so I would prefer for you to choose this treatment plan and let me go home.” And the whole team just stood there and looked at him – and this wasn’t even his transplant team! This was a consulting team, I think it was Infectious Diseases! – and they all just looked at each other and went, “All right! We’ll go with that! Sure!”
They were really proud of him. They all congratulated him for the fact that he listened carefully and he made his own choices. And that’s the kind of stuff that we really have to engrain in him, because someday he’ll be responsible.

Mother of David, 15


transplant_heart_red She’s so used to us remembering
My husband reminds Alanna a lot of how lucky she is. Especially when it comes to medicine; we’re trying to get her to be more responsible. She’s so used to us remembering, us filling the pill planner, us getting the meds. Her homework with her doctor is learning her medications: she knows what they look like, but to name each one and how much is the dose and all that. She could probably do a little bit but not be perfect or right on it, so that’s kind of what we’re working on right now…Our fear is when she gets older and we’re not with her. It’s like, my husband’s going to be 80 calling her, being like, “Did you take your medicine today?”

And he will be, I know he will be! And she’ll be 40 and married with her own kids. “Did you take your medicine?!” You know how Dad is!

Mother of Alanna, 15

transplant_kidney_yellow You’re the one that needs to control it
That is a huge problem with families and parents, because it’s terrifying! It’s terrifying to let your teenager control their meds.

I just said, “It’s not mine, it’s yours. I’m going to help you, but it’s your job at the age of ten to give yourself a shot. I’ll watch, I’ll support you, I’ll help you, but you need to do this because you’re the one that needs to control it. And you need to understand the magnitude of what you’re doing. You need to understand, ‘What happens if I don’t do it? Well, if I don’t do it, I’m in the hospital. And I don’t want to be there.’ So in order not to be there, you’re going to have to fight that battle within yourself to fill your med case, even though you despise every second of opening every pill bottle and putting it in the med case. You need to bring yourself there.”

So we did it in increments. I would just double-check: I always watched her take her meds up until she was about 15, 16, when I felt comfortable that she understood the parameters. I would get upset if she skipped one, but I tried to meter it so that it wasn’t so much a judgment as, stay focused on why and what this is about and what it does and what will happen if you don’t.

Mother of Samantha, 22


transplant_kidney_yellow The biggest thing was I let her have that freedom. I encouraged her to be independent. I stepped back and encouraged her to ask the questions, to write the questions down, if she had any questions when we were at providers to participate…with the thought that, I’m going to raise this child and because of science, because of what they’re doing here at Children’s, she’s going to be an adult, and I need to raise one that can function, and not one that’s completely dependent on me for everything. But it was also a very hard thing for me as a parent to relinquish that control. Because you’re feeling so out of control anyway that it kind of gives you this false sense of control to be able to do that, but it is a false sense of control… You just have to feel it, understand that that growth will happen if you allow it to happen.


Mother of Samantha, 22


transplant_kidney_yellow You need to live with your fear
As far as the parent goes, you need to live with your fear. It is fear, it’s going to be there. I don’t care if the child is thirty: you’re always going to have those concerns. Thinking it isn’t going to make it better, obsessing about it isn’t going to make it better. You just have to believe that you have shown them some of the tools that they can use, and make sure your avenue of communication remains open so that when they do screw up, or when something happens, you just hope it’s not that bad that it can’t be repaired in some way.

It’s no different from sending your 14-year-old off on his bike! It really isn’t any different – it’s just that it’s so much more immediate and the memories and the trauma that you’ve been through is so much more palpable. You feel like you’ve cultivated this, and oh my gosh, they’re at this stage and it’s really good, and I don’t trust them because they make bad decisions sometimes!

You just have to give them a chance. They may screw up, and you just have to hope and pray that the screw-up isn’t too big…but that’s no different than any other kid. It’s just more pronounced.

Mother of Samantha, 22