Benefit dance being held for local woman with rare kidney disorder

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WAYNESBURG– It was about a year ago that life instantly changed for Tammy Foster Stewart, 46, of Waynesburg. Until then, Stewart, an avid horsewoman and licensed practical nurse by profession, was full of vim and vigor. She worked for HCR Manor Care in McMurray in what is known as a weekend warrior position, putting in long hours of patient care. At the time, Stewart had no idea she would soon be the patient.


On Friday, a benefit dance will be held from 6 to 10 p.m. at the Clarksville fire hall with ’80s music provided by DJ Scott McCracken. Stewart grew up in Clarksville and is a graduate of Jefferson-Morgan High School. All proceeds of the $10 admission to the dance, sales of food, a 50/50 raffle and Chinese auction will help Stewart’s family cover growing medical and household expenses as she continues to fight a rare kidney disorder.


Stewart said it all started when her blood pressure dropped quickly and then skyrocketted. She was so sick she couldn’t walk 15 feet without throwing up. She was constantly fatigued and in pain. On top of this, she is a diabetic. Despite these symptoms, doctors dismissed her complaints, or assumed she was a seeking prescription drugs or wanted social security disability. Stewart said one doctor’s demeanor changed instantly when her husband said he is a coal miner. Stewart said she gets upset thinking how people are treated by the medical community based upon perception and not on medical science.


Along the way, one of the doctors Stewart visited performed a test that confirmed her illness. Amazingly, seven months passed before she learned what that was. The pathology report from the test had the letters “FSGS” written at the bottom, Stewart said.


She and her sister, Dee Harvilla, 47, sent this report to doctors who treat a condition known as Amyloidosis.


“We were putting her symptoms into the computer and everything she had happening fit Amyloidosis,” said Harvilla. “When they saw the pathology report they said, ‘We won’t treat you. It’s not Amyloidosis.’”


However, they didn’t tell Stewart the report said she has FSGS or focal segmental glomerulosclerosis.


Eventually, Stewart found a doctor who got it, Dr. Shirley Dopson, a nephrologist at Washington Hospital. The bad news is FSGS is a rare disorder that attacks the filtering system in the kidneys causing protein to spill into the urine and scar the kidneys, often destroying them in the process. There is no known cure for FSGS. There are also no definitive determinations as to what causes the disease.


Although Stewart said she is blessed with good insurance through her husband’s work, the family is struggling with the loss of her income. She took a family medical leave early on, but lost her job in January when she ran out of leave options.


“People think that a coal miner makes so much money, why would we need any help. But, when that second paycheck leaves you still have all of the bills and half of the income,” Stewart said. “I made as much as my husband did doing the weekend warrior program.”


Stewart and Harvilla have their suspicions as to what may have triggered FSGS in Stewart. They believe it is possible a genetic predisposition coupled with contact with some type of hazardous waste or heavy metal. At one time, Stewart lived in an area where two other people were diagnosed with FSGS. Harvilla said there was a rumored dump site near their homes. The odds of three people in such close proximity getting the condition are pretty high considering there are only 5,000 to 6,000 cases diagnosed each year.


After an especially bad attack in February, Stewart was given a walker to get around. The symptoms mimicked those of a stroke. Her speech was somewhat unintelligible and she was generally out of it.


“The doctor said to me, ‘You’re out of it, huh? Your prescription run out?’ They didn’t have my records because Dr. Dopson was out of town. They thought I was on drugs,” Stewart said.


So far anything that has helped to alleviate Stewart’s symptoms has ended up causing her other difficulties, especially with her diabetes. At one point, she gained 11 pounds of fluid in just 10 days. Either she finds herself with too much fluid or dehydrated. Good days are followed by a day of ‘bottoming out,” Harvilla said. “We try to make sure she’s not here by herself,” she added.


Stewart said it is her family that has helped her get through everything. She gave some advice to those who are having medical problems.


“You know your body better than anybody. They say to tell your doctor. Well, I did and he told me I was nuts,” Stewart said. “People need to push and make them check things.”


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