| << Return to Site Tyrosinemia: Kyle Wimberg Thrives After Two Liver Transplants"Things Could Be Worse"
As printed in the February 2004 edition of Leaps and Bounds.
At age 1, Kyle was diagnosed with a rare condition called tyrosinemia. With his third birthday just around the corner, he has already endured two liver transplants, two bouts of viral meningitis, serum sickness, a form of cancer and two broken bones in his left leg. After all this little boy has been through, he's surprisingly happy and content. His contagious smile brightens your day, and his adorable wink makes you melt.
Kyle Wimberg Thrives After Two Liver TransplantsWith his third birthday just around the corner, Kyle Wimberg already has endured two liver transplants, two bouts of viral meningitis, serum sickness, a form of cancer and two broken bones in his left leg.
Yet his mother says, "Things could be worse." What she has learned is to appreciate what she and her family have. "When he was in so much pain, I prayed, 'Let him live.' But I also said to God, 'I'll be miserable for the rest of my life, but take him now if it will stop his suffering.' Today, I say 'thank you' for every day without pain," says Janet Wimberg.
Like most healthy babies, Kyle was chubby, but his arms and legs were skinny. At his one-year checkup, scheduled on his first birthday, Kyle's pediatrician detected an enlarged liver, spleen and kidneys, and immediately sent the Wimbergs to Cincinnati Children's Hospital Medical Center for testing. A week later, on Valentine's Day, staff from the Liver Transplant Team informed them that Kyle had a rare condition called tyrosinemia and needed a liver transplant. "A Punch in the Stomach"
"That news felt like a punch in the stomach," Janet recalls. It triggered a whirlwind of consultations to get Kyle placed on the donor waiting list for a liver, along with meetings with all members of the Liver Transplant Team to prepare this Cincinnati family for what was to come.
Tyrosinemia is an inherited disorder that causes severe liver disease in infancy. It is so rare that there are only about 600 cases worldwide, and 100 in the United States. If undiagnosed and untreated, tyrosinemia scars the liver and can cause liver cell cancer. In Kyle's case, the only treatment option was a liver transplant.
After a month of waiting, the Wimbergs got the call in March 2002 that a liver had become available. That same day, Kyle went into surgery to receive part of a liver from an 18-year-old who had passed away.
During the next six weeks of hospitalization, Kyle's immune system was suppressed with a drug to help his body accept the new liver. As a result of this routine post-transplant treatment, Kyle was too weak to fight a bout of rotavirus. Then a blood clot closed a liver vein, requiring more surgery to reopen it.
During the summer, Kyle contracted Epstein-Barr virus, which, due to his immune-suppressed state, caused viral meningitis. And in August, doctors diagnosed him with irreversible chronic liver rejection; he would need another transplant. By October, Kyle was virus-free and able to be listed again on the transplant waiting list. Rapid Deterioration
On Halloween, Kyle was readmitted to Cincinnati Children's because his liver was failing faster than anticipated. "They told us if Kyle didn't get a liver in five to seven days, he would die. I was even considered as a possible living-related donor, but my liver lobe was too small," Janet says. To the family's great relief, Kyle rallied and went home a week later, still waiting.
Their vigil ended in November 2002, when a liver became available from a child who had passed away. "The hardest thing for me to reconcile was that, again, someone else lost their child," Janet says. "We didn't lose Kyle, but we came close. The pastor on the Liver Transplant Team helped us through this."
This time, Kyle's body started to attack the anti-rejection drug he was receiving, causing serum sickness. He was given a new immune-suppressing drug, then contracted Epstein-Barr virus again. It caused not only viral meningitis, but also a form of cancer called post-transplant lymphoproliferative disease.
To treat this new condition, Kyle received "chemotherapy light," Janet says, "which is not nearly as aggressive as the treatment for full-blown cancer." A Hope-Filled Future For a Pediatric Liver Transplant Patient
Kyle had his last chemotherapy treatment in September 2003, and the latest tests show no signs of cancer. Just as important, his new liver is working well a year after the
second transplant.
In the fall, Kyle fractured his leg, since his bones are weak from medications. The day before he was to get his cast off, Kyle slipped from one rung to the next while playing on his toy slide and fractured his femur. His cast extends from his chest down, but Kyle takes it all in stride.
After all this little boy has been through, he's surprisingly happy and content. His contagious smile brightens your day, and his adorable wink makes you melt.
Kyle's language abilities are normal for his age. He continues on anti-liver-rejection drugs, and he will begin working with a physical therapist to catch up on walking.
Throughout this rollercoaster experience, Janet became an assertive and knowledgeable advocate for her son. At Cincinnati Children's, she found physicians, nurses, social workers, financial counselors, a pastor and other staff to support her.
"Before Kyle was born, I didn't even know where Cincinnati Children's was; I just knew it was really good if we needed it. Now, I would highly recommend it. They truly care for the whole family," she says. Janet and her husband, John, also have three daughters, ages 5, 14 and 17.
"When the doctors recommended a transplant, they told us we'd be taking a relatively healthy child and making him sick. They said we were trading off a death sentence for a chronic illness. That's what we did, and I'll take the latter." Related ServicesLiver Care Center
Hematology / Oncology
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[此贴子已经被作者于2005-5-5 4:08:27编辑过]
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发表于 2005-5-5 17:02
