Growing Pains

The Baltimore Sun

No matter what Eric Washington is doing - be it catch-up work from the classes he has missed or a game of pick-up football that his doctors have forbidden - he must be home by 10 p.m. No exceptions.

As he has every night for nearly three years, the Polytechnic Institute senior must hook himself up to a suitcase-sized contraption that will clean his blood as he sleeps. It's something Eric's kidneys used to do on their own, before they failed him when he was just 14. Now, as he waits for a kidney transplant, he relies on a dialysis machine beside his bed to keep him alive.

"I'd like to one time go home and just go to sleep," he says, "without having to worry about it."

It is a struggle to reconcile being a kid with having a chronic disease, the need to rebel with the life-threatening consequences of breaking the rules. There aren't a lot of children on dialysis - roughly 1,600 in the United States require a machine to perform the normal functions of their kidneys. But there are more than ever, because many children whose kidney disease would have killed them in infancy are surviving to need organ transplants.

Eric, 17, is but one example of the millions of children nationwide with a chronic illness, from kids with diabetes who are on strict diets and even give themselves insulin shots to those with cystic fibrosis who may need four treatments a day to maintain their ability to breathe. Many face uncertain futures. All have obstacles the healthy do not.

Many miss school, causing them to fall behind. They may find it hard to fit in. Some show physical symptoms they can't hide.

"It's extremely difficult for them to transition to adulthood as other teens do," says Barbara Fivush, head of pediatric nephrology at the Johns Hopkins Children's Center. "That journey that they take is harder. ... It's different, and teens don't really like to be different."

Here's how different: Eric has a catheter implanted in his abdomen by which he connects himself to bags of a cleaning solution that helps remove toxins from his blood. He has to limit what he eats - no bags of chips or liters of soda allowed. And he has spent a lot of time in the hospital - six stays in the first six months of 2008, making keeping up with schoolwork more than a chore. All the stress has led him to develop an ulcer.

Eric's close-knit family - his mother, Michelle Washington-Garrett, a systems engineer at Fort Meade; his stepfather, Lamar Garrett, a research analyst at Aberdeen Proving Ground; and his sister, Erica, a student at Western High School - tries to help him through it all, but also makes sure he keeps his plight in perspective.

"This is what God has laid before him," his mother says. "Either you accept it and deal with it, and take the positive out of it ..."

"What positive?" Eric says, interrupting.

"It could be a lot worse," she says. "He hasn't been dealing with this since birth. He was at least able to grow." (Eric is nearly 6 feet tall.) "You accept your lot in life. You deal with it."

Adds his stepfather: "There are some really sad stories."

Shannon S. Joslin, child life manager at the University of Maryland Hospital for Children, sees children with those sad stories all the time. She and her staff work hard to be sure that kids get to be kids, even if they have an all-consuming illness.

"They have hopes and dreams for what they want their lives to be ... but that chronic disease goes with them," she says. "How do you still live your life and not let your chronic illness define you?"

It may be hard for a parent to let her ill child go on sleepovers or camping trips, experiences that are part of the fabric of adolescence. At the same time, it is important for a parent to step back and allow some freedom, Joslin says. Otherwise, that child might have a hard time becoming an independent adult.

"In the old days, the goal was to get them through it, to live," Hopkins' Fivush says. "Now, more and more, we're focusing on the quality of life. We spend so much time on the medical side. It's important to do everything we can to make them as whole as they can be."

Eric Washington appeared healthy when he got a physical in the summer of 2005 for a Christian camp. The doctor found something unusual in Eric's urine, and a biopsy revealed severe scarring on his kidneys. It was later determined Eric had focal segmental glomerulosclerosis, or FSGS, an acquired immune disorder. Doctors still don't know why Eric got sick.

His kidneys were failing and quickly. Eric's stepfather offered one of his. In the summer of 2006, both were prepped for surgery when a mishap occurred as Garrett was getting a catheter inserted. The surgery was called off. Ultimately, Garrett had to go in for a second surgery, and Eric's mother decided someone else would have to donate a kidney to her son.

In the meantime, Eric started dialysis. He had to go to a clinic twice a week, three hours each time, and have the blood removed from his body to be cleaned and then recirculated. Sometimes he had to miss school. His Saturdays were usually ruined.

Eric hated every moment. But after two months, he was able to switch to the machine he uses while he sleeps. His main complaint about in-home dialysis, aside from the freedom it steals, is the alarms that go off whenever he lies on one of the tubes wrong, piercing beeps that wake him from a deep sleep.

His mother was deemed a poor donor. So as Eric waits to hear if he got into college, he also waits for a kidney through the national transplant list. The family thinks it could be a few years.

He desperately wants to get into the University of Maryland, College Park. He wants to live outside of the house he is tethered to, to strike out on his own. But he figures he is a long shot for UM. His SAT scores might be high enough, he says, but so many days out of school haven't been kind to his grade point average.

More likely, he says, is that he will go to his mother's alma mater, Morgan State University, which he fears could mean staying at home.

"Every teenager I know wants to leave their house after high school. I don't want to be the one living with mom after high school. I want to try to be as normal as possible," he says.

Eric's illness often intrudes on his thoughts. He needs to remember to take his medication (which sometimes he forgets). He needs to remember his doctor's appointments (ditto). He needs to stay away from foods that will give him headaches or make him extra tired.

He wants to let loose, if only a little bit. He tells a story about a Saturday night with his buddies that ended when it was time for him to go home for dialysis. "On Monday, they told me they stole traffic cones and blocked off the Wendy's," Eric recalls. "I wanted to do that, but I couldn't because I had to be on the machine."

He knows such mischief is silly. He also knows it's the kind of thing he has been missing out on.

He has felt normal in the hospital and at an annual camp for children with kidney disease, where other kids are sick, too. There, the friendships are instantaneous. Everyone is going through the same thing, and Eric's version of normal is just like theirs.

Tomorrow, Eric will turn 18. He will become one of the 350,000 to 400,000 adults on dialysis in the U.S. There will be new doctors, less hand holding. Should he have to visit a dialysis center, the person in the next bed could be a shackled prisoner getting a kidney treatment.

Then again, each day brings a chance that Eric will get a kidney. That, of course, would change everything. Dreams about that day bring a smile to his face.

"I want to go out," he says, "and not come home until the next day."

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