"I almost remember it in some ways as a relief," Jim Duquette said. "At times I didn't know how the heck I was going to do both jobs, helping and assisting with Lindsey's health and doing the job with the Mets."
The Orioles hired Jim Duquette as a vice president in 2006 and the family moved to Maryland where Lindsey could be treated at Johns Hopkins Children Center. He has since left the Orioles to take a job as a baseball analyst for MLB Network Radio.
In 2008, Lindsey was officially diagnosed with FSGS.
Only about 5,400 people get the disease each year and its cause is unknown. One theory is that it has something to do with a person's immune system and not the kidneys. Former NBA player Alonzo Mourning is one of the people who suffers from FSGS and has brought attention to the disease.
"More research is necessary to figure out the pathways, where the disease is coming from and what causes it," said Henry Brehm, executive director of the NephCure Foundation, which supports research to find a cure. "Until the scientists figure out what causes it, we can't develop a therapy or drug."
Duquette said he never thought twice about giving up a kidney for his youngest daughter. Still, he felt knots in his stomach when he got the call that he was a donor match while taking the train to New York where he tapes his radio show.
"We actually had a match and it was me," he said.
Jim Duquette hopes to be healed enough from the surgery to lead a walk and fundraiser scheduled three weeks later for the NephCure Foundation. He sits on its board and hopes to one day find a cure for the disease to help his daughter and other children.
The Duquettes always have been honest with Lindsey about her disease and the same is true about the kidney transplant. Lindsey talks frankly about her condition.
"Sometimes, it seems unfair that I have this," she said.
She admits to being a little scared about the transplant. Her parents planned it for the summer so she wouldn't have to miss school.
Lindsey looks forward to stopping dialysis, calling it annoying. She felt the urge to throw up the first time she had the mixture of dextrose, sodium, potassium and other electrodes pumped into her body to remove the toxins from her blood.
She can't wait for sleepovers with friends, which she can't do because her dialysis takes place overnight. She looks forward to eating some of her favorite foods again, like spaghetti sauce and orange juice, which have high levels of potassium. The kidneys maintain stable potassium levels in most people.
Lindsey's nephrologist at Hopkins, Meredith Atkinson, said it is unclear when they will know if FSGS will attack the new kidneys.
"It could happen right away, and sometimes it does," she said. "Or it could happen later on."
Before surgery Lindsey is undergoing blood filtering to remove harmful antibodies and cut back on the risk of FSGS reappearing, Atkinson said.
Even with the looming surgery, Lindsey is a typical kid. One day after school she played Sponge Bob computer games and frolicked with the family dog. She plays on the basketball team even though she is noticeably smaller than her other teammates.
Every now and then she even fights with her brother and sister, who sometimes tease her for milking her kidney condition to get what she wants.
And sometimes she nags her mom for things like email acounts.
"But everyone has one."
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