Mind over body

Mind over body

By Savannah Morning News
Created 2007-06-16 23:30

Daniel Trowell is a happy kid, his father, Gregg, assures me.
In the face of adversity, 10-year-old Daniel has managed to keep a positive attitude. His long history of hospital stays has given him the wisdom of someone much older, however it hasn't broken his spirit.
As I talked with Daniel and his parents about all Daniel has been through, he sat on his mom's lap and giggled. He corrected his dad when his dad misnamed one of the infections he suffered.
"People tell him all the time, 'You're like a 30-year-old in a little body,'" Lisa Trowell, Daniel's mother, said.
Daniel was born prematurely and with cerebral palsy, weighing only two pounds and two ounces. To add to his already major health issues, when Daniel was 4 he was diagnosed with leukemia.
During chemotherapy, along with other complications, Daniel contracted a type of yeast infection, candidiasis, which caused him to have a fever of 106 degrees for an extended period of time. This caused his kidneys to shut down.
Daniel has been on dialysis for six years as a result of the infection. The upside is Daniel has been in remission since his first round of treatment.
The first three years of dialysis, Daniel received hemodialysis performed in dialysis clinics. There are no local clinics that can accommodate a child as small as Daniel; although he is 10 years old, he only weighs 35 pounds.
The Trowells were uprooted and spent time in Atlanta and Augusta, as well as Alabama, in search of the best care for Daniel.
For the last three years, Daniel has been treated with peritoneal dialysis. This form of dialysis is done at home, while Daniel sleeps. Giving Daniel the treatments at home has allowed the Trowells to move back to this area and to have more freedom with their day-to-day life.
The Trowells live outside of Springfield in the house Gregg's grandfather built.
They still travel to Augusta once a month for Daniel's checkups.
The dialysis can filter his blood, but it doesn't help with the regulation responsibilities of the kidney. This creates a different set of long-term problems for Daniel.
"The longer you stay on dialysis, the more problems you will eventually have," Lisa said. "It's like a balancing act."
Daniel is already experiencing some problems with cholesterol. This may lead to long-term heart problems. Other potential problems may arise from his calcium and phosphorous levels, which may affect his bone growth.
The next step for Daniel is a kidney transplant.
The Trowells struggled to find a doctor who would take Daniel's case. His size and blockage in his arteries from past surgeries and dialysis makes the transplant more complicated than usual. These reasons also make Daniel ineligible for a cadaver kidney. Daniel's kidney must come from a live donor.
"There are not many cases like him," Gregg said.
After being turned down by doctors in Augusta and Alabama, an Atlanta transplant surgeon, Dr. Thomas Pearson with Emory Health Care, agreed to take Daniel's case.
The Trowells have been on a roller coaster of emotions, trying to do what is best for their son.
"Finally, when we got an OK, it was like winning the lottery," Lisa said.
The Trowells are now focused on finding a donor for Daniel. They are hesitant about approaching people personally, because there are risks and they don't want any potential donor to feel pressured.
"We want to reach out, to put more knowledge out there for transplants and organ donation," Gregg said.
Neither Lisa nor Gregg can donate their own kidney to Daniel. Lisa had kidney stones and, after losing weight to make himself eligible for the surgery, Gregg's blood sugar began to fluctuate, rendering him ineligible.
Although not with the same activities as other children his age, Daniel's schedule stays full. He is home-schooled two days a week by a retired librarian and attends physical therapy in Savannah once a week. He also enjoys playing with his cousins.
A kidney transplant would allow Daniel to be more independent. He would no longer have to be hooked up to his dialysis machine for 12 hours a day.
Daniel's quality of life would improve as well. Dialysis takes a lot out of a person, often making the patient constantly tired. The transplant will help Daniel to feel better on a day-to-day basis.
"A transplant is not a cure for kidney disease," said Erica Henderson, living kidney donor transplant phase two coordinator at Emory University Hospital. "It is a way for them to have a better quality of life."
A prospective donor would begin the process with testing locally, including blood and urine tests. If the tests indicate it is possible for him or her to donate a kidney, the final step is a two-day outpatient series of tests and interviews at Emory in Atlanta.
The surgery is done arthroscopically to reduce bleeding, as well as recovery time and risk of infection. Recovery time for a donor is estimated to be between three and six weeks. Daniel's insurance would cover the medical costs.
"I wish people understood the importance of (organ donation)," Lisa said.
The Trowells hope that people will learn from Daniel's situation.
Throughout his sickness, Daniel's outgoing personality has prevailed.
"He doesn't meet any strangers," his mother said.

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