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When 17-year-old Matthew Krupke was playing football with a friend in the back yard of his Syracuse home in November 2006, he couldn't see the football coming toward him. With no history of vision problems, his parents thought it was time for a routine eye check-up, but it turned out that his vision loss was linked to a metabolic disorder, methylmalonic acidemia (MMA), which Matthew was diagnosed with at birth.
MMA caused his ammonia levels to be extremely high, but because doctors caught it when he was just 2 days old, Matthew was spared the developmental delays and permanent neurological problems that can result if the condition goes undetected. But in all people with the disorder, the body can't break down protein properly—due to missing enzymes in the liver—which causes damage to the kidneys. So Matthew had been on a protein-restricted diet and had to regularly ingest a special nutrition-rich formula through a g-tube.
Matthew's eyesight worsened, and soon, blank spots appeared in his field of vision. This is an uncommon symptom of MMA, and his doctor in New York determined his best bet would be to have both liver and kidney transplants in order to normalize his enzyme levels, which seemed to be causing his vision loss. "This was my chance at a normal life and I was ready for it," says Matthew. "I knew I would be an overall healthier me."
If the transplants were successful, Matthew would no longer need to use the g-tube or stick to a restricted diet; but he would have to take precautions like any transplant patient, including taking immunosuppressants for the rest of his life.
So Matthew and his parents, Bruce and Patricia, came to Children's Hospital Boston for a transplant evaluation and a "family" meeting about the transplant. The "family" included about 20 Children's employees from the transplant, kidney and liver, metabolic and infectious disease teams. During the meeting, the Krupkes had an opportunity to ask everyone questions, and when it was over, felt completely at ease. "The commitment of the transplant team really let me know we were at the right hospital," says Patricia.
Matthew had always been active, playing basketball, baseball, football and kickball, snowboarding, jet skiing and just about any other backyard sport. "He really wanted his vision to improve and he knew what the procedure would entail. All he wanted was to be a normal kid and be able to drive, play basketball and get back to school," says Laura Krawczuk, RN, MS, CPNP, who facilitated Matthew's transplant evaluation and managed his care. Krawczuk remembers how Matthew was constantly joking with her and finding ways to stay optimistic. "The transplants were the only chance Matthew had to stop the progression of his vision loss," she says. "If we couldn't do a transplant, he might have gone blind."
On May 22, the Krupke family got the call they'd been waiting for: a liver and kidney were available for him. They took a medflight to Children's and Matthew underwent the 10-hour procedure. The transplants were a success.
When he woke up, he was only seeing in black and white, which he says was scary, but he gradually started to see colors again as his vision has slowly improved. "I give my highest compliments to the nurses and the doctors at Children's," says Bruce. "They had his very best interest at heart, and as a parent, it's comforting to know how much everyone cared about my son's life."
"When I got home from the hospital, I lowered my basketball hoop and slam dunked," Matthew says. "It felt so good to play again." Matthew's eyesight has not yet completely returned, but it is improving. He's living his life like a normal teenager, with a few modifications. He has special binoculars so he can see the television and the chalkboard at school, and he has a magnifying dome he uses to read his text messages. He's also rehearsing for his role in his school's performance of Guys and Dolls. "I deal with my vision loss on a day-to-day basis," he says. "But this whole experience and the transplants made me stronger mentally. I like to look at the bigger picture and not worry about the little things."
The Krupke family is gearing up for a family trip to St. Kitts and they plan to walk with the Pediatric Transplant Team in NSTAR's Walk for Children's on June 8. Naturally, Matthew and his family strongly encourage others to sign up to be organ donors. "Each member of our family has always been listed as an organ donor," says Patricia. "I have always thought it was a good thing, but when you have something like this happen and see what it means first-hand, it heightens your awareness. It really is the ultimate gift."
April is Donate Life month. To learn more about organ donation, visit neob.org.
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