BENSON -- Elizabeth Giese was caught off guard by the pain, swelling and growing fatigue that began to afflict her in 2009.
The swelling puffed her face so badly that at one point, she could hardly see.
Giese, of Benson, said that neither she nor her doctors had any idea of what the cause of her misery was until her diagnosis in the spring of 2009. She is afflicted with a kidney disease known as Focal Segmental Glomerulosclerosis, or FSGS. She was diagnosed with primary FSGS, signifying that doctors do not know what brought on the disease that is scarring her kidney's filtering system.
She was not expecting the news that followed the diagnosis, either. The Prairie Correctional Facility in Appleton where she worked as a correction's officer was to close. The loss of her job meant the end of her health insurance coverage too.
Giese said she is currently obtaining medical coverage through the state of Minnesota, but was without insurance coverage for months.
Her bills are large, and that's why her aunt Amy Jobgen of Benson said plans got under way for a fundraiser on her behalf.
She must also manage insulin-dependent diabetes.
Giese, 35, currently has about 20 percent kidney function. The only treatment for the disease is to take medications to reduce the protein levels in her bloodstream. The steroids needed weaken her muscles and tendons. It is painful to stand for periods of time, and she's had damage to her Achilles tendon, Giese said.
Giese said she and her doctors are hoping to extend the effective lives of her kidneys as much as possible. It delays the day when she will need a kidney transplant, which could be in as little as eight months to a year, she said.
A kidney transplant is not a cure. The disease is likely to attack a transplanted kidney as well, said Giese. Having now been diagnosed with the disease, she will be able to take medications to slow its advance.
The medications help her live as normal a life as possible. Giese said she is also uplifted by the support she receives from so many. "I have major support from my family.''