Imagine waking up every day feeling sicker and more run down.
Imagine taking more than three dozen prescription pills every day.
Imagine having a graft or a catheter surgically implanted into your body.
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Ryan Winkels
Now imagine not knowing why.
Ryan Winkels of Youngsville doesn't have to imagine, it's the reality he lives with every day.
Winkels, who will be 46 this year, is polite but matter of fact on the phone and sounds like a much older man. His voice is slight and reedy and you can hear a grimacing undertone of pain when he speaks. The sound is an instantly noticeable manifestation of the disease that has ravaged his body since he began feeling sick around three years ago.
"For three, three and a half years, I just haven't felt right," Winkels said. "I'm always sick. I'm always tired."
Winkels, who worked with U.S. Securities as a security sergeant before falling ill, went looking for an answer to his medical problem. It would take him a year before he found one.
Two years ago, Winkels was diagnosed with focal segmental glomerulosclerosis (FSGS).
According to the University of North Carolina Kidney Center, "FSGS is named for the scarring, or 'sclerosis', that can be found in the kidneys of people with this disease. When looked at under a microscope, everyone's kidneys contain millions of tiny filters called 'glomeruli'. These filters work much like a colander that you might have in your kitchen. Blood is 'poured into them' as it circulates through the kidney, and the water-like part of the blood drains through. This becomes your urine. When these filters are damaged they become scarred. They are no longer able to filter blood appropriately. This is called 'glomerulosclerosis'."
"They (doctors) don't know how I got it," Winkels said.
Winkels isn't alone, an average of approximately 5,000 new cases of FSGS are diagnosed each year in the United States. Although they have identified risk factors that are more common amongst people with the disease than in the general population, medical researchers have yet to discover what actually causes FSGS. The disease often manifests in people with none of the identified at-risk traits, which makes pinning down reliable indicators difficult.
Winkels said the disease is worsening over time and he's currently getting dialysis treatments, which require either a graft or catheter implant, three times each week. According to him, the treatments will soon become a daily routine.
"I've just steadily gotten to where I'm not getting everything out," he said. "That's just what it takes to get my blood clean. My kidneys just don't keep up."
Winkels is hoping to someday be able to get a new kidney, but hasn't made it onto the transplant list yet. He said he is still navigating the process required to qualify for the list, and has to have weight loss surgery before meeting list requirements.
"I'm jumping through all the hoops to get there," he said
For Winkels, who lives with only his wife now that their two children are adults, the finances of facing the disease have become a point of serious concern. Winkels collects disability as the disease has progressed beyond the point of allowing him to work.
"It ruins you," he said. "By the time my insurance pays anything, there's never enough left. I have over 40 prescriptions. Insurance doesn't cover it all and we pay the rest."
He noted the number of prescriptions he takes, and therefore the toll they take on the couple's finances, will only increase following a kidney transplant.
"It makes me very tired," Winkels said of the disease. "You don't feel like doing anything at all. It causes a lot of pain."
Donations to assist with possible transplant costs for Winkels can be sent to Help HOPE Live, c/o Ryan Winkels. 150 North Radnor-Chestnut Rd., Suite 120, Radnor, PA 19087.