A Three-Year Search For a Kidney

MILFORD, MA- Rosa Cubias wakes up each morning next to her husband and her dialysis machine and starts her routine of unplugging herself from her treatment of the night before. She shares her room with a stack of about a dozen boxes filled with cleansing fluid and machinery fit for a sci-fi movie that is doing the work of her failing kidney. Three years ago- Rosa couldn't have imagined she would be living her life bound to a machine, she thought she had more time.

Growing up in Guayama, Puerto Rico, Cubias was in and out of hospitals since she was 13. She was diagnosed with glomerulonephritis complicated with lupus. After a year of treatment the lupus went dormant, but kidney issues followed her throughout her childhood in Puerto Rico to her life in Milford. She said she knew at some point it would become a serious complication, but not at the age of 50.

Cubias was diagnosed with end stage renal disease, stage five of chronic kidney disease. Her kidneys are only functioning at 10 to 15 percent of the normal capacity- Cubias relies on a dialysis machine to properly filter waste from her blood.

Cubias said it is a miracle the disease was caught in time- it wasn't until an annual physical stopped doctors and Cubias in their tracks and landed her in the hospital. With her kidneys functioning at such a low capacity, Cubias said doctors were astonished she was as lively and healthy as she appeared. From that point on it was a whirlwind of medical tests and dialysis training that allowed her to be placed on the wait list for a healthy kidney- a list she's been on for three years.

Before the diagnosis, Cubias was a well-known teacher at Mother Hubbard Preschool. For ten years she worked alongside her classroom teacher, Julie Gambale. "She's like my sister," Gambale said adding that Cubias was a natural in the classroom. "You need to have that love when working with kids," Gambale said, and Cubias was never in short supply.

She was known as the no-nonsense teacher who was firm with a loving hand, dedicating time outside of the classroom to help students. "If she saw a child who needed a coat or backpack, she was the first one to help," said Pam White, director of the school. Cubias acted as the school's informal translator, even going as far as helping parents fill out enrollment and free lunch paperwork in her free time.

She extended her help without batting an eye- "It's like a family there," Cubias said. And she quite literally meshed her work and biological family together, getting both her daughter and mother a job at the school. It's what Cubias was known for, bringing people together.

"My mother is the glue that holds my family together," Cubias' daughter, Betzaida Perez said. But how do you help the person who is always helping others? When Cubias was diagnosed, Perez immediately took over as caretaker, attending every doctor's appointment, training and briefing that had to do with her mother's disease.

Perez was the first to get tested to see if she would be a donation match- for the woman who would give the shirt off her back, Perez would gladly give a kidney. "It's not as easy as you think, there's lots of tests they put you through," Perez said, disappointed she didn't turn out to be a match for her mother.

Relatives have come forward, hoping to be a match but complicated health histories, mental illness and differing blood types have all kept Cubias from her desperately needed kidney. While this could mean the chance at a healthy and longer life, Cubias has never been one to complain or ask for help. "It's not something I like to ask people," she said, asking for a live organ is no simple gesture.

Perez has taken to Facebook to try to spread the word about her mother's search for a kidney, hoping for a live donation. As the time passes, Cubias is forced to settle into the idea that she may have to wait for a deceased donor, if she finds one at all. That dark thought creeps into Cubias' mind from time to time- she's been out of work since her dialysis treatments began due to her condition and has plenty of time to think.

For about 11 hours a day, Cubias is connected to her dialysis machine, with tubing running from her stomach to the machine in her bedroom. The tubing only allows her to travel a few feet away so she is limited to her bedroom, kitchen and bathroom for half the day. Cubias said she tries to time the treatment to coincide with her bedtime, but it can be hard to sleep with tubes running through you.

She considers herself someone who values her independence and never needed to rely on others. When Cubias was first diagnosed, she chose peritoneal dialysis because it allowed for more flexibility, with treatments being done at home. At the time, Cubias was under the impression that she would continue working but the health risks were too high to chance. "Leaving work was probably one of the hardest things," Cubias said

Through it all, Cubias stays positive, she says its what has kept her healthier than she should be. "If I focus on the negative things, I'll only get sicker," she said. With her first grandchild due in June, Cubias is giving her search and fight all she's got and her family is standing with her. "It gives me something to live for," Cubias said and her family something to fight for. "She is a dedicated wife and mother and deserves to be here to watch her first unborn grandchild grow up." Perez said.

To learn more about transplants and being a match to donate visit UMass Memorial's Transplant page.

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Photo Credit: Samantha Mercado/ Patch Staff