171 Ashley Ave.
Charleston, SC 29425
843-792-1414
800-424-MUSC
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February 2009
Teen Thrives Despite Differences
When you ask Ashley Jennings how she's been affected by renal disease and the liver/kidney transplant she received at age two, she answers in typical teen fashion.
"I do what normal kids do, I just have to sanitize my hands about every other minute," says the 17-year-old Lexington High senior.
The exaggeration makes her mother chuckle. "She has to wash her hands a lot, but not that often," smiles Robin Jennings.
Keeping her immunity low so her body won't reject the "new" organs and the problems that go with that will always be a challenge for Ashley, says her mom. "It's still stressful when her numbers are out of whack - that will always be a part of her life."
Ashley was diagnosed with polycystic kidney disease (PKD), a genetic disorder that ultimately results in kidney failure, before she was born. The disease causes cysts in the kidneys and liver, which enlarge and compromise function. "They predicted she would live 36 hours if she lived at all," recalls Robin.
With autosomal recessive PKD, which is what Ashley has, each parent carries the gene. "It's a chance thing that both parents would be carriers," explains Dr. John Orak, Ashley's physician and director of pediatric nephrology at MUSC. "Subsequently Ashley was born with the disease."
Almost immediately after her birth in a local hospital, the newborn and her parents traveled to MUSC, where specialists got her kidneys and lungs working. Within two weeks she was home.
"They said she'd spend most of her first year in the hospital, but she didn't," says Robin thankfully. Yet the toddler suffered with anemia, breathing and liver problems. Her kidney was five times normal size and had grown into other organs; her liver was four times larger than normal.
"If she was on her back, she couldn't move," recalls Robin. "She broke a rib from the pressure of the organs. Because she was so swollen, she never crawled but went straight to learning to walk."
For the next two years, Robin and her husband Boyce had one objective: to get Ashley to 12 pounds so she would be healthy and strong enough to accept an organ transplant.
PKD manifests differently in the liver and kidneys, explains Dr. Orak. "Sometimes there are problems with the liver, sometimes there aren't. As the child develops, the cysts cause the kidneys to wear out at an accelerated pace, and dialysis or transplant becomes necessary."
In children, he notes, no form of dialysis is as good as having a kidney transplant. In Ashley's case, her kidneys were failing and her liver had severe scarring. She was placed on the organ donation list in January 1994, and that April she received a combination liver-kidney transplant at the MUSC Transplant Center, the only one in the state.
"Young patients like Ashley almost always need both organs replaced", says Dr. Orak. A combination transplant lowers the risk of rejection and boosts recovery.
The surgery took 14 hours. There was an initial decrease in her organ function while she was in the hospital, but she stabilized.
"Dr. Orak will tell you that we had an easy trip," says Robin, who still tears up remembering.
That was 15 years ago. Today, Ashley is a pretty blonde who plays sports including soccer and archery, has a part-time job and enjoys music, reading and animals.
It took a while for her to find her place. "At school, I felt singled out and like I didn't belong. I was teased because of my bigger belly and the hair on my arms caused by the medication," says Ashley.
Special camps during summers made all the difference. "Dr. Orak and Ms. Karen [Hiott, R.N., Dr. Orak's nurse] introduced me to camps where I met other kids with the same problems, and that helped me realize I wasn't the only one, that there are others," says Ashley.
"She'd come home comparing scars, talking about dialysis, knowing what other kids had gone through that was less or worse," remembers her mom.
"Those camps really helped me with my confidence. I figured out I could be myself, that I might be different but I can be a person and I can live with it," says Ashley.
She takes medication daily to suppress her immune system, and will probably do so for the rest of her life, says Dr. Orak. The teen continues to see Dr. Orak or one of the newly recruited pediatric nephrologists at the MUSC Comprehensive Children's Kidney Care clinic every three months, Dr. David Sas and Dr. Ibrahim Shatat; there is always the risk that she'll reject the organs.
"She could reject them five minutes from now," says Robin.
"We've talked with several parents with similar circumstances: Our advice is pray a lot, have faith, keep up with medicine and take one day at a time," offers Boyce. "What is normal for us is not normal for someone else."
The team at MUSC has always been there with excellent care and solutions, say Ashley's parents. With centers in Charleston, Greenville and Florence, the Comprehensive Children's Kidney Care provides specialized care for PKD and other renal diseases in children including transplant, dialysis, hypertension, glomerular disease and renal stones.
"At age 18, Ashley must find a new doctor for the adult stage of her life," says Robin. "That will feel like cutting off a leg. I thought Dr. Orak would retire and leave us, but he's making us leave him. He's pushing us out the nest."
Yet Ashley will be closer than ever. This fall, she enters the College of Charleston with hopes of studying pre-med and, ultimately, pediatric nephrology.
The young one is ready to fly.
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