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|Wednesday, February 20th, 2008||Emily Halevy | CWK Producer|
“I knew I was sick; I didn’t understand how serious it really was. I didn’t think it was life threatening at the time. As I got older I kind of realized it was and how close I was to not being here anymore.”
– Nicholas Wilde, 18
More than 25,000 Americans will receive a life-saving organ transplant this year. At the same time, 18 to 20 people die each day waiting for a transplant. Some of those who receive a transplant, however, are teenagers who have a greater chance of losing their new kidney, liver or heart mostly because they’re less likely to follow their doctor’s advice.
“You’re almost 5’3,” says the nurse.”
“Almost,” says Nick.
An autoimmune disease left Nicholas Wilde shorter than most boys his age. It also meant he needed a kidney transplant at the age of 12.
“I knew I was sick; I didn’t understand how serious it really was. I didn’t think it was life threatening at the time. As I got older I kind of realized it was and how close I was to not being here anymore,” says Nicholas.
To stay healthy, his doctors have Nicholas on 10 different medicines — some twice a day. He has to eat foods low in fat, sugar and salt, and avoid playing contact sports. It’s a lot of medical advice to follow. However, studies show that up to 50 percent of teenage transplant patients don’t follow their doctor’s orders.
“They want to be seen as ‘normal.’ They want to be seen like their friends. So having to stop and take your medicines, having to watch what you eat, having to do things differently doesn’t fit in with their desire to feel like the rest of the group,” says Laura L. Mee, Ph.D., pediatric psychologist.
Another problem, says Mee, is that teens want to be independent.
“And part of that sometimes unfortunately translates into not wanting to do what their parents and the other adults in their lives want them to do, including taking their medicines,” says Mee.
But when teens don’t take their medicine or adhere to a healthy diet, it can mean organ rejection — losing their new kidney. And they may never get another one.
“Compliance is definitely something we look at and we would not list someone for a second kidney if we did not think they were going to take care of it,” says Sandra Amaral, M.D., pediatric nephrologist.
Nicholas’ kidney came from his cousin, a soldier who flew home from Iraq to donate it. Nicholas is one teen who follows his doctor’s advice.
“I would feel like if I didn’t comply, that I would be letting down not only my family but also [my cousin]. And you know, he took a risk to help me out and I would just, what? Throw that all away? For what? You realize you don’t have a choice. You really don’t. You know, it’s life or death really,” says Wilde.
What We Need To Know
- People who need an organ transplant often have to wait a long time for one. Doctors must match donors to recipients to reduce the risk of transplant rejection. This is when the recipient’s body turns against the new organ, causing it to fail. People who have transplants must take drugs the rest of their lives to help keep their bodies from rejecting the new organ. (National Institutes of Health, NIH)
- The organs that can be transplanted are: liver, kidney, pancreas, kidney/pancreas (can be transplanted at the same time), heart, lung, heart/lung (can be transplanted at the same time) and intestine. (NIH)
- After receiving your transplant, you will continue to work closely with your transplant team, who will play an active role in your recovery. Although living with a transplant will give you a new lease on life, caring for a healthy organ involves taking sensible steps to recover fully and return to a normal, active lifestyle. (NIH)
- Get into a routine of taking your medications at the same time each day. Set up a time each week to sort out your medicines for the whole next week and put them into containers. (NIH)
- Most people are weak after any surgery. Transplant recipients must recover from surgery, as well as the illnes that caused the need for a transplant. As a result, exercise and muscle strain should be limited when you return home. Talk with your doctor about what to expect. (NIH)
- As you start to feel better, regular exercise will help you regain your strength. Because you may feel tired at first, you should take rest breaks during exercise. Gradually, increase the amount and type of physical activity you enjoy. (NIH)
- National Institutes of Health (NIH)
- Children’s Healthcare of Atlanta