Local woman battles incurable disease
STRASBURG – A young Strasburg woman is battling a rare, incurable kidney disease with pain treatments that provide little relief.
Kari Nicholson, 21, of Strasburg, was diagnosed with medullary sponge kidney disease when she was 15 years old. She lives with her mother and caretaker, Diane Nicholson, as she requires 24-hour care.
“This disease that she has will progress,” Diane Nicholson said, “and get worse.”
According to the National Kidney Foundation website http://tiny.cc/2o32cy, medullary sponge kidney is a congential disease, meaning it is present at birth. It occurs when small cysts form on tiny tubes within the kidney or on the collecting ducts where urine is collected for removal, reducing the outward flow of urine from the kidneys.
Her mother said the disease was discovered by accident after she took her daughter to the doctor following a gastrointestinal infection.
“That almost killed her,” Diane Nicholson said. The doctor had said it was one of the worst gastrointestinal infections he had seen in almost 20 years of practicing medicine.
After he got the infection under control, a CAT scan revealed that both of Kari Nicholson’s kidneys were filled with kidney stones.
They went to multiple specialists to discover why she had the kidney stones and finally found a doctor at the University of Virginia with an answer: Medullary sponge kidney disease. Diane Nicholson took her daughter to John Hopkins Hospital for a confirmation.
The disease causes her daughter to pass kidney stones, anywhere from one to five stones at a time on almost a daily basis. The disease takes calcium from her bones and creates kidney stones, she said.
To date, she said her daughter has passed about 136 kidney stones, with about 84 still in her kidneys.
“Most people pass one kidney stone in their whole life and they are done,” said Diane Nicholson.
“It’s a painful disease for her and it’s hard for me to watch her go through this.”
The condition also causes kidney infections and urinary tract infections, she added.
The disease can also lead to dialysis, as well as kidney failure.
There is no treatment for the condition, she said, but her daughter takes multiple medications, morphine and dilaudid about three times a day to help cope with the pain.
“She’s on the strongest pain medications they can put her on,” Diane Nicholson said.
“I feel more research needs done. With the technology today, there should be something that they can do, because even a kidney transplant won’t help her,” she said.
To help find better ways to treat the condition, Diane Nicholson found specialists in a Cleveland, Ohio, clinic. Her daughter sees a urologist, nephrologists and a rheumatologist.
There they found a doctor who hopes to be able to prescribe a medication to reduce the size of the kidney stones to prevent future surgeries, as well as slow the progression of the disease to “help give her kidneys a break and give her a break,” Diane Nicholson said.
Though there at birth, the disease wasn’t detected until her daughter’s teens. When she was about 2 years old, she broke her femur bone coming down a playground slide. In the years that followed, she continued to break bones and her mother didn’t know why. She also started getting urinary tract infections at an early age. These were the early signs of the kidney disease. The bones were weak due to the loss of calcium.
“That’s why her bones weren’t strong enough to hold up to most childhood activities,” Diane Nicholson said.
In addition to her kidney disease, urinary tract infections and bone problems, Kari Nicholson also has elevated liver enzymes, fibromyalgia and asthma.
She said she’s had surgery on her kidney, tonsils, appendix, knee and gall bladder – mostly between 2010 and 2012.
She sees a counselor to help cope with the psychological effects of her conditions, which include panic attacks and post traumatic stress.
In order to afford treatments from her various conditions and trips to the Cleveland clinic, Diane Nicholson, a single mom, has set up a GoFundMe site, http://tiny.cc/qyy3cy.
Transport to hospitals and clinics are difficult in more ways than just financial. Sudden kidney stone attacks require emergency room care – sometimes ambulance transport – making travel to appointments more difficult.
Between May 22 and June 17 alone, Kari Nicholson had five emergency room visits, twice with the assistance of the rescue squad. One of the ER visits resulted in her admittance to the hospital.
Kari Nicholson isn’t able to leave the house very often, meaning she can’t see friends, go on dates and do other things a healthy 21-year-old would do. She will live with this disease for the rest of her life.
During high school, she only completed half the school year in the classroom during her freshman, sophomore and junior years, finishing the other half of each year at home. She was completely homebound during her senior year.
Visit Kari Nicholson’s GoFundMe site at http://tiny.cc/qyy3cy.
Contact staff writer Kaley Toy at 540-465-5137 ext. 176, or firstname.lastname@example.org
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