Through Illness She Learns Strength, Patience
“I’m ready if they call me,” Kaychelle Smith, 12, said sitting with her mother Machelle on a cushy beige couch in the living room of their Arverne apartment, her bright smile proof of her eagerness.
It could happen as soon as this Fall. Then again, it could take years. But when it does happen, Kaychelle and Machelle will drop everything and proceed directly to the Bronx. Within hours, Kaychelle will undergo her second kidney transplant surgery since 2002. This time, she and her mother hope, it will mark the end of an emotional medical roller coaster ride that began ten years ago.
In 1994, when Kaychelle was 2½ years old, her mother noticed that her face was extremely swollen and rushed her to St. John’s Episcopal Hospital in Far Rockaway. Kaychelle was transferred to North Shore University Hospital where she was diagnosed with nephritic syndrome, an illness where the body loses protein through the kidneys. The condition causes severe swelling around the arms, legs and face and can lead to greater susceptibility to infections, high cholesterol, blood clots and serious complications with the kidneys.
Doctors treated Kaychelle’s condition with the prescription steroid Prednisone, a common remedy, but that too had its complications. Kaychelle’s kidney function improved, but she began retaining water. At age 5 her weight had ballooned to 100 pounds – a side effect of the steroid. The kids at school picked on her relentlessly, her mother said.
Six years later Kaychelle was diagnosed with Focal Segmental Glomerulosclerosis (FSGS), a kidney disease that results in scar tissue forming on the filters within the small but important organs. NBA all-star Alonzo Mourning was diagnosed with the disease last year.
Less than a year later, in November of 2000, Kaychelle was diagnosed with End Stage Renal Disease (ESRD), which is complete, or near complete, kidney failure. She underwent surgery and began dialysis treatment. For 11 hours each day she was linked by a catheter to a bulky Home Choice Pro machine that flushed her with Peritoneal Dialysis Solution.
“It cleans out your system like your kidneys would do,” Kaychelle explained.
Then in March of 2002 she got her first kidney transplant from a deceased donor. Machelle said her daughter came alive. She was more self-confident once the catheter was removed from her stomach region.
Kaychelle’s “interest wasn’t centered on her medical condition,” anymore, her mother said.
But just as mother and daughter thought the days of embarrassing water retention and hours of inconvenient treatment might be over, Kaychelle’s body began to reject her new kidney.
“They always tell you that it’s not guaranteed,” Machelle said.
The day after Christmas, 2003, Kaychelle underwent surgery so that she could go back on dialysis.
“I was depressed. I didn’t want to go back on,” she said quietly, remembering that difficult time in her life. Machelle said her daughter’s mood changed, and that Kaychelle began directing her hostility on a natural target – Mom, her closest ally.
About six months later, the kidney from her failed transplant surgery was removed.
“The kidney was dying inside of her,” said Machelle. So it was back on the machine, back to the alcohol prep pads, drain sponges and surgical masks to prevent infections, which kidney patients are vulnerable to.
Kaychelle started down the road to recovery, and the eventual search for another donor. She has no brothers or sisters, and her mother comes from a small family, so her living-donor options have always been limited. There are 8,000 people in New York State alone, the vast majority of which need kidneys, waiting for organs, according to the New York Organ Donor Network.
The wait between now and whenever her surgery will take place is not wasted time, however. Kaychelle, a “social butterfly,” in her mother’s words, is not cooped up at home waiting by the telephone. She went to summer camp for two weeks this summer, and enjoys going to the movies and the ballet. She also likes to dance and ride her bicycle. There’s just one thing she has to avoid, besides certain dietary restrictions that limit sodium, potassium and high-phosphorous foods: She doesn’t go swimming because her catheter could become infected.
The waiting has also given Kaychelle, not yet a teenager, time to reflect on what has become an central issue in her life: organ donation.
“Your organs can help somebody else out,” she said with the simple eloquence of a child.
Machelle said she has seen lots of children like her daughter, who are waiting on lists for the gift that could change their lives.
“Get on the donor list… Your body can help so many people after you pass,” she urged. Michelle said the Christian Culture Center in Brooklyn, St. John’s Baptist Church in Far Rockaway and helpful neighbors like Marcia Loyd and others, have provided a “greater foundation” for her and her daughter.
Remarkably, Kaychelle said prayer and Bible stories have helped her keep a more positive outlook and realize that her challenge can be overcome.
“I pray to God to help me find my kidney,” Kaychelle said. “You have to be patient with it.”