SIDNEY — Focal segmental glomerulosclerosis (FSGS).
Those are three words that Linda Draving, 65, of Sidney, never thought she would hear in conjunction with her health.
In October 2016, Draving was diagnosed with FSGS, which is a disease where scar tissue develops on parts of the kidney that filters waste from the blood. Only 1 percent of people are ever diagnosed with the disease.
Because of the disease, Draving is in the end stage of the renal disease. She undergoes dialysis every night while she’s sleeping. She is also diabetic and suffers from high blood pressure.
Because of the dialysis and the severity of the disease, she’s looking for a living donor to give her a new kidney.
Draving remembers that day in October 2016 when she received her diagnosis like it was yesterday.
“I couldn’t breath,” said Draving. “I called Jamie (her daughter) and said something was wrong.”
“She was sent to St. Rita’s (in Lima),” said her daughter, Jamie Shoemaker. “The kidney doctor there sent her results to a doctor in California. It was on the last day of September when she went to Wilson Health. They sent her to St. Rita’s and she was there until Nov. 1 when she was dismissed from the hospital.”
“The doctor said he’s never seen the disease go that fast,” said Draving, who was given medicine to help heal her kidneys.
But the fast moving disease “completely took the kidney,” said Shoemaker.
“The day before she went to the hospital, she was working full time at Ohio Living Dorothy Love,” said Shoemaker.
“This disease forced me to quit my job,” said Draving. “It forced me to become fully disabled.”
Draving worked in food service at Dorothy Love. She helped fed the residents.
“I would have to lift 50 pounds and the doctor said ‘no’ to that. So I had to leave. In January, I would have worked there for 15 years,” said Draving.
Draving said the administration and employees at Dorothy Love have been very supportive of her since her diagnosis.
“This shocked everybody,” said Draving. “I was a full-time employee who suddenly had to quit. When I called off that day (Sept. 30), I never thought I wouldn’t be back.”
Draving spent a week in ICU at St. Rita’s. Each night since she’s returned home, she’s undergone dialysis while she sleeps. A recycler puts the solution into her body and recycles it out.
“It takes 8 hours to complete,” said Shoemaker. “It cycles all through the night.”
Draving said each morning, after unhooking herself from the dialysis machine, she checks her blood pressure and her weight.
“I go through three bags of solution every night during the dialysis,” said Draving. “I have to wash my hands for 1 minute and then take the bags out (of the containers) and pt them in the machine.”
The walls of her room are lined with boxes of the bags of solution.
“I had been living by myself,” said Draving. “My husband (Ken) passed away in May 2016. Then I got this.
“He (Ken) got sick all of a sudden too,” she recalls. “He had esophageal cancer which spread to hi liver. In 1990, he had lymphoma and was cured. I was lucky to have him more years.”
Shoemaker said it was hard on the family after her mom got sick so soon after losing her dad.
“We thought it would be a good idea to be here with her all the time,” said Shoemaker. “My husband, Joe, and I decided to move a manufactured home on her property.”
So Draving, the Shoemakers and their two sons, Riley, 2, and Lincoln, 1, all live together, supporting one another through the good and bad times.
“They take good care of me,” said Draving. “I can call out to them during the night if I need to. If I can get a transplant, I’ll be able to go back to my house then.”
One of the side effects of the dialysis has caused Draving’s diabetes to flair up. Before the kidney diagnosis, she was able to control her diabetes with a pill. Now she must take insulin to keep it under control.
“The dialysis puts sugar into her system,” said Shoemaker. “If she gets a transplant she won’t be putting the solution into her body. Hopefully her diabetes will be able to be controlled with a pill again.”
The family is looking for a living donor transplant because “it eliminates the waiting list for a donor,” said Shoemaker. A person on the waiting list could wait two to three years for a kidney transplant. Draving will be put on the waiting list while the family tries to find a living donor.
“I can’t be a donor because I’m her support system,” said Shoemaker. “Because of our little ones, my husband can’t be a donor either.”
The family is getting the word out about Draving’s story through social media and word of mouth. They will also be working with the kidney association.
“Any testing that has to be done will be paid for my mom’s insurance,” said Shoemaker. “The sooner we can get it (transplant) done, the better. She will have a better quality of life with a transplant.
“She loves to garden, but now when she gets down the steps, 10 minutes later, she’s tired,” said Shoemaker. “And she’s not very steady on her feet.”
Draving said she used to have a big garden every year. This past summer, she wasn’t’s able to plant one.
Both Shoemakers work part time so Draving helps babysit their children.
“Mom is our main babysitter for the boys,” said Shoemaker. “She does a good job with them.”
“They’re my pride and joy,” said Draving. “It helps me that I’m taking care of them every day.”
A prospective donor, said the women, will give a blood sample to be tested. If it’s a match, the person would then undergo other testing.
The University of Cincinnati Medical Center will be doing the transplant, they said. Blood testing can be done locally and results will be sent to the hospital.
Anyone who is interested in learning more about being a living donor can contact Shoemaker at 937-726-1549 or by email, [email protected].
