Taking the Medications

• Talking to Children & Teens About Taking Medications
• Talking About Problems Taking Medications
• Amount of Medication After Transplant
• Today
• Gold Box
• Suggestions for Taking Medications
• Discussing Medications Before Transplant
  

Talking to Children and Teens About Taking Medications

We let the child know that their heart transplant was a gift, that they need to hold on to this gift, and that the way to do that is to take care of their bodies and to lead a healthy lifestyle. Especially when they’re getting to be adolescents, sometimes the choices are out there to smoke and drink and to not take care of your body in that way, so we talk a little bit about that. But one of the main things we talk to people about is that their medication is going to help their body not reject their new heart. We know that it’s tough to take all of these medicines, and that it’s tough to see what they do to your body as far as your physical appearance. But the extreme dosages that you have to take right after transplant are temporary- they do lessen after a while. So we talk to people about what might make it easier for them to take this medicine. Is it a big chart that they could follow, or is it a checklist that they could follow, or can they think of anything else that might make this a little easier for them? Because I know that sometimes for a child, even taking one medication a day is difficult to remember- it’s a pain but you just have to do it. So we talk about a lot of the feelings that go behind this. But we really do stress that this is a schedule that they have to stick with. I think the majority of parents and children know that this is a gift that they have to keep, and so people don’t have too many problems.

I think the times that you don’t see compliance are when you don’t have a parent backing 100%. And you see a patient in those teenage years, when they feel invincible and think, “Maybe everyone else needs to take their medication but I don’t need to.” So we do have some kids who come in, and through biopsy the doctors can tell that medicines haven’t been taken. That’s when the red flag goes up to everyone on the transplant team to really talk to the child. And the transplant team is very blunt about it; they say, “Without this medicine, you will die.” And they have to, because they need to let people know that this isn’t a game; this really will happen. So we can tell kids that we know it’s hard and we’ve never gone through it so we can’t even judge how hard this is for them and how hard it is to be different from the other kids and have to take this medicine. But we tell them that without it, this is what will happen: your body will reject your heart and you will die from this. So it’s heavy, but it has to be, because that’s life.

Beth Donegan-Driscoll, Child Life Specialist

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Talking About Problems Taking Medications

If an adolescent is having trouble taking medication post-transplant, I try to encourage self-reliance and explain to them that this is their chance to shine, to show people that they can take care of themselves, and to prove that they can do this and that they have some control. A lot of the medications they have to take are not for right now. Their immunosuppressants are, but we have to protect their bones and protect their hearts, and other things that are going to affect them 20 or 30 years down the road. And it can sometimes be difficult to get a child or an adolescent to really care about that. So I try to really put the onus on them and give them some self-control. The idea is that they have some power to make that decision and we try to guide them, in a way, to make a good one.

Greta Feinberg, Nurse Practitioner, Renal Program

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Amount of Medication After Transplant

After transplant, the kids generally go home on a fair amount of medication, probably 10 or 12 different ones, but they won’t be on the exact same doses forever. The longer it is after the transplant, the fewer medications they will be on. It does taper off gradually, according to how well they respond to the new heart and different lab values that indicate whether they have developed rejection of any type. Families are always glad to hear that they won’t be on all of those medications forever.

Maura Harlen, Cardiology Staff Nurse I

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Today

Transplants are not a cure; you do have to take your medications to survive. It’s a fairly complicated undertaking, and it’s not perfect. But what I tell families is that under the circumstances, it cannot be guaranteed by them or me what will happen tomorrow, but when we’re talking about their child, the best we can do is what we have today. I think that’s in a large way what transplants are about.

Frank Pigula, MD, Cardiovascular Surgeon

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Gold Box

I had a patient once who had been complaining about one of her medications. She was on some medications that interfered with the absorption of cyclosporine, one of the immunosuppressants that we use, so we had her on approximately 1,000 milligrams of cyclosporine. They come in 100-milligram capsules, and she was taking five of them twice a day. She was upset about it, but we said, “There’s not much we can do about that- you need to have good levels.” So one day we were doing a bronchoscopy and I came out afterwards and talked to her father to let him know everything was going fine. And he presented me with this little gold box and said, “My daughter wanted you to have this.” The box was from the Metropolitan Museum of Art, and I thought, “That’s really sweet- it’s some little pin or something that I can put on my white coat.” The box had a little gold ribbon around it and I opened it up and inside was a cyclosporine capsule. I looked at it and they’re huge! Also, she had kept saying, “They smell like skunk,” and I had told her, “You know, it’s not so bad.” But I smelled it and sure enough it smelled like skunk. It was the funniest thing. So we ended up switching her to something she liked a lot better.

David Waltz, MD, Physician, Lung Transplant Program

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Suggestions for Taking Medications

These kids need immunosuppression to basically trick their bodies into not recognizing their lungs as foreign and not rejecting their lungs. As far as we know right now, they have to think of this medicine as a life-long need. Someday when we do enough research, we may learn we can start to back off these medications in the future, but for right now we think about them as long term. It is so important that they take them. These are not medicines where you can decide that you’re not feeling well and you don’t want to take them for a few days, or you’re sixteen years old, you’re just sick of taking medicines and you don’t want to take them anymore. Not taking them can have very significant consequences. We emphasize to families that it’s so important, and that it’s important that they’re regular about taking their medications and take them at the same time of day everyday. They have to figure out what’s going to work best for their family. Most families keep a log, or a schedule book. They can check off, “I took my 9am medicine this morning,” and “I took my 9pm medicine this evening.” You really need to be able to get organized, and for some people that’s hard. For a lot of patients though, they’ve had chronic diseases their whole lives, they’re used to taking a lot of medicines. But after transplant, you have to get really focused on that.

Debra Boyer, MD, Physician, Lung Transplant Program

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Discussing Medications Before Transplant

Before the transplant, we prepare families for some tricky medications, although we usually tell them that it is manageable. Most kids are on fewer medications 6 months after transplant than they were before with their liver disease.

Maureen Jonas, MD, Physician, Liver Transplant Program

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