Returning to Life after Intestine Transplant
Cody and Nate are friends, and they are very much alike. They love to skate, eat pizza, and play video games. They met in the hospital, where both of them just had intestinal transplants.
Cody is excited to get back home. He feels much better than he did last time he saw his room. If he keeps feeling better, Cody might even be able to see his friends from day camp. Things are finally getting back to normal.
Cody's mom helps him organize all the medications he has to take. Cody knows that since he has a new intestine, he has to work at taking care of it and keeping his body healthy.
Nate is excited, too. He's happy to sleep in his own bed again, and to see his brother and sister. The doctor even said he should be able to go to school in the fall. Nate feels normal for the first time since he started getting sick.
Nate's mom helps him organize all of his medications. Nate's doctor told him he has to keep taking them to stay healthy, and Nate plans on staying healthy.
How Medication Helps Keep the Peace
The cells in Nate's body are like brave soldiers, and their job is to protect Nate from "enemy soldiers" (like germs) that manage to get inside. To do the best job they can, Nate's soldier cells attack any cells they don't know. Since the cells in Nate's new intestine didn't come from Nate, they are strangers to the cells already in his body. Nate's new intestine and his soldier cells don't get along because they don't recognize each other. They don't realize that they are both working together to keep Nate's body healthy. Without medication, they might fight and make Nate sick again. Nate's medication acts like a peacemaker, getting Nate's cells to see that the cells in his new intestine are not enemies, but important friends.
It works the same way in Cody's body. He needs medication to keep the peace between his soldier cells and the new cells from his transplanted intestine. If soldier cells (that think they're just doing their job) attack his intestine, Cody's intestine can't do its job. When this happens, it's called "rejection". Cody remembers what it was like having a sick intestine that can't do its job: no fun at all!
While Cody and Nate are getting better at home, they do a great job taking care of themselves. Cody reads and watches TV a lot. There isn't much to think about besides his new intestine. All his friends are finishing up school. Everyone in Cody's family knows all about his medications, what they do, and why he needs them. Nate is also good at remembering to take his medications. His mom or dad is always there to remind him when it's time for medication. Even Nate's little brother helps.
Getting Back to Normal Activities
Pretty soon, school is out and summer is here. Now Cody's friends can come over all the time. They knock on the front door most days when they get home from day camp. Cody grabs his basketball and they shoot hoops in the driveway. Cody's friends say, "Wow, when did your lay-ups get so good?" Cody smiles. They don't know he sometimes comes out to practice before they get here.
By that time, Nate is ready to join his friends at baseball practice. He's been on the same team with Matt since T-ball. Practice is a little tiring at first, but Nate is happy to be out on the field again. Pretty soon, he can throw faster pitches than ever!
One evening, Cody goes to the movies with his friends John and James. When the movie is over, John's dad picks them up. "Did you remember to fasten your seatbelt?" he asks John before driving off. Remember . . . Cody remembers what his mom said before he left for the movies: "Don't forget to take your meds at eight o'clock." Uh-oh, Cody did forget! He'd been so caught up in the movie, he didn't even think about it. Cody remembers something else, too: his mom and doctor told him how important it is to always let them know about any missed doses. As soon as John's dad drops him off at home, Cody rushes inside and tells his mom.
Nate forgets his medication, too. Matt's dad took Matt and Nate to see a real major-league baseball game. People are cheering the home team all over the stadium. This is great! Best of all, the home team is winning. Nate looks at his watch during the eighth inning, and realizes it's time to take his meditation. But he finished his water already, and he doesn't want to interrupt the great time he's having with Matt. The game should be over soon; he'll just take them then. But by the time the game is over, Nate isn't thinking about medication anymore. He's thinking about the home team's big win, the cool pennant he got, and the restaurant Matt's dad is taking them to before going back to Nate's house. The medication stays in Nate's pocket.
At clinic, Cody, his mom, and Cody's doctor talk about Cody's health and the medications he is taking. They see if any of the medications can be adjusted. Cody feels strong, and tests show that his new intestine is doing well. As long as Cody's intestine is healthy, his doctor will carefully adjust his medications over time so that Cody doesn't need to take as much.
Now Cody wears a watch that beeps when it's time to take his medication. The watch is pretty cool; Cody thinks it makes him look like a grown-up!
Taking Your Medications: Why It’s Important to Remember
After that day at the game, Nate tries harder to remember his medications. He usually does, but still does not tell anyone when he misses a dose. Nate feels so healthy, every once in awhile he skips doses even when he does remember. He's just too busy to go inside the house to get a drink, or to find a water fountain when he's at the mall with his friends. Nothing bad happened when he didn't take his medicine before; maybe he doesn't need it after all.
But Nate's new intestine does need the medication, and it needs just the right amount. Because Nate isn't taking enough medication, the medication is not able to keep peace between Nate's soldier cells and the cells in his new intestine. The cells in Nate's intestine are being attacked, even though Nate can't feel it. Cells are so tiny that Nate won't feel any differently until many cells have been attacked.
When this happens, Nate begins to feel tired again. His pitches are just as good as ever, but practice wears him out as much as it did last summer, before he got his new intestine. One day, he has to miss practice because he has a fever. Nate's mom and dad take him to the doctor because they are worried. After doing some tests on Nate's intestine, the doctor says that the intestine has gotten very ill. Nate will have to stay in the hospital awhile to get better again.
"It can be easy to forget how much you need your medication once life gets busy," Nate's doctor says when he comes to see Nate in his room. Nate is glad his doctor understands. "You feel healthy, just like you did when you didn't need any medication to stay that way. You're in charge of taking care of your intestine, and that's a big job. Lots of kids who have had transplants need a little help – grown-ups do, too. That's why all of us have to work together to keep your intestine healthy – you, me, your parents, and your whole transplant team. We all want you to be a success."
Tips for Staying Healthy after a Transplant
Here are some ways you can stay on top of your treatment and keep your new intestine healthy:
- You can use tools, like Cody's watch, to help you remember your medications. Medical planners, pagers, or alarms can also remind you when it's time. Pillboxes have little sections, so you can fill each one with a single set of medications you'll need to take. That way, you won't have to take lots of different containers with you; your meds can go anywhere you do.
- If your body feels uncomfortable in any way while you're taking medication, the best thing to do is tell your parents or doctor. Don't try to fix those uncomfortable feelings by stopping or changing your medication on your own! Your doctor may be able to make adjustments, like Cody's doctor talked about. Don't be afraid to speak up; your transplant team can't help if they don't know something is bothering you.
- Speaking of speaking up, it's important to tell your parents or doctor if you do miss a dose. Don't worry about getting in trouble; the most important thing is staying healthy. Your doctor and transplant coordinator can tell you the best thing to do if you miss your medication. The sooner you tell someone, the easier it will be to find a solution.
- Make it easy for yourself. Remembering your medications is only half the work. The other half is actually taking them once you do remember. Of course, there will be times when you're just too tired or busy to go through a bunch of different steps. Everybody gets tired! Try and plan ahead so that when medication time comes, you don't have to do anything extra. Keep your pills in a small case you can carry with you. Having a glass of water by your bed saves a trip to the kitchen in the morning and at bedtime. You can even carry a small water bottle around with you when you're out with your friends or family doing something fun. That way, you won't have to take time out to find something to drink, no matter where you are.
