Jacob Roubinek lives in Sandstone and has been working for SCI Cable out of the Mille Lacs area for the past five years. Roubinek has spent much of his life caring for others including his wife, Amanda, and two adopted children, Edward (19) and Isaac (5), but is now in need of some care himself and is in search of a kidney donor.
Roubinek, who is now 41, was first diagnosed with FSG (focal segmental glomerulosclerosis) kidney disease in 2006. Since then, his kidney function has steadily declined over the years, and in February, he received news that he is in need of a donor transplant as his kidney function has dropped to 20%.
“My hope and prayer is to get my new kidney before my kidney function drops below 15%, requiring me to go on dialysis and restricting me from working,” said Roubinek. “I expect to need a kidney within a year.”
Roubinek tries to stay positive as he and his family enjoy living on their small hobby farm, camping, gardening, and doing other outdoor activities, but life has certainly changed since the first diagnosis.
“While we expect a transplant to be successful, this process has been very stressful for our family,” said Roubinek. “It has taken a significant change in diet, limiting sodium to just 1,800 mg per day. Everything from lunch meat to bread and tortilla shells has to be made at home with special recipes and has required a great dedication of time for our full time working schedules.”
Putting aside fears about whether a donor will be found, the Roubineks are doing their best to enjoy the summer while they wait and hope for the right donor to step forward. But finding the right match is certainly the greatest burden, according to Roubinek.
FSG kidney disease, according to kidney.org, happens when the kidney function is altered as many diseases and conditions can attack glomeruli, the tiny filtering units inside the kidneys where blood is cleaned, and cause scarring in the kidney. In Primary FSG, the disease happens on its own without a known or obvious cause and can affect both children and adults and affect males slightly more often than females. Signs and symptoms include swelling in body parts such as the legs, ankles and around your eyes (called edema); weight gain due to extra fluid building in your body; foamy urine caused by high protein levels in the urine (called proteinuria); high fat levels in the blood (high cholesterol); and low levels of protein in the blood.
Treatment, such as Immunosuppressive drugs, plasmapheresis, ACE inhibitors and ARBs, diuretics, and diet change, can slow the process of kidney disease. But over time, some patients with FSG gradually get worse until they reach kidney failure. If this occurs, they will need a kidney transplant or dialysis to stay alive.
“I try hard to stay positive, but one can’t help but think of the possibilities of a transplant not working or not finding the right match,” reflected Roubinek. “I think of my future with my wife and children and hope for many years of joy with them. Additionally, being only 41 years old, I am expected to need another transplant in my lifetime, about 20 years from now.”
If anyone is interested in becoming a donor, they can begin by completing an online screening at www.livingdonormc.org. The process begins with phone calls and a local blood draw. The waiting list for a deceased donor is four to five years long at this time. Being a living kidney donor increases the success of the transplant, the life of the kidney and recipient, and answers prayers for families like the Roubineks. If interested in specifically donating to Jacob, there is a question on the questionnaire to list a specific recipient.