For 20-year-old USF junior Mary Lumapas, life during childhood never strayed too far from the hospital.
Throughout her life, Lumapas has survived three resurgences of cancer, a bone marrow transplant and is now living with kidney failure and relies on nightly dialysis treatments to replace the functions of her lost kidneys.
“When I started at USF, I was already in kidney failure, but I wasn’t on dialysis yet,” she said. “My doctor and I … didn’t talk about it until it became a reality.”
Lumapas said dialysis is not a long-term solution, and remaining on dialysis would hinder her from accomplishing her life goals like going to medical school and becoming a doctor.
“It would be like a different life energy wise,” Lumapas added. “I’ve got goals and I’ve got things I want to do … I wouldn’t be comfortable starting a family on dialysis because I just wouldn’t have the energy.”
Dr. Sharon Perlman, a pediatrics professor in the USF Health College of Medicine and one of Lumapas’ former doctors, said dialysis can cause serious complications like infections, cardiovascular disease and an overall shorter lifespan.
She said this is why dialysis is often viewed as a bridge between losing all kidney function and getting a transplant.
“Unfortunately there are far too many people who die waiting for a kidney transplant … there just aren’t enough transplants available for everybody,” Perlman said. “Transplantation is really the best option for a patient with kidney failure — you’re giving that person a working kidney, and you can live a fine life with just one kidney.”
To help Lumapas find a suitable living kidney donor, Student Government’s (SG) senate president and Lumapas’ close friend Kristen Truong worked with USF and Lumapas to develop a campus- and Tampa-wide campaign called “Share Your Spare.”
Truong said Share Your Spare grew from Lumapas’ initial idea of posting basic flyers around campus this summer to a Facebook page, a volunteer team, a tabling event and campaign assistance with the Marshall Student Center, support from numerous USF departments and organizations and an SG Senate resolution documenting SG’s support for the campaign.
One university organization involved in the campaign is USF’s Pre-Med American Medical Student Association.
“They’ve let me speak at (events), they’re helping create flyers, they’re organizing an event later on and being really involved,” Lumapas said.
Lumapas was first diagnosed with Wilms’ tumor at the age of 5, a rare type of kidney cancer that primarily affects children. She said her tumor had already progressed to the point of needing surgery by the time it was detected, and her left kidney was removed as a result.
When she wasn’t living at home in Citrus County, Lumapas was receiving chemotherapy treatment at All Children’s Hospital in St. Petersburg. While she spent much of her childhood in the hospital, she felt it created a great environment for children and said she does not want people to view her as a victim for living with cancer.
“(The hospital) has a whole department called Child Life that’s just about making (hospitalization) fun for kids and making it understandable. … this is not something that destroys a childhood,” she said. “Someone told me once, ‘You’ve had no childhood,’ and I got so mad at him. I had a great childhood in my mind.”
Lumapas relapsed with Wilms’ tumor at 10, leading to the removal of part of her left lung. She said her long-term chemotherapy treatments also acted as the trigger for aggressive Myelodysplastic Syndrome, a bone marrow disorder.
The disorder caused her to need a bone marrow transplant at the age of 13, which she received from a living donor found through a medical registry. Lumapas said she suffered a host of complications after the transplant and needed to be completely isolated for months afterward.
She said two other child patients in hospital rooms next to hers, who received bone marrow transplants at the same time she did, later passed away.
“Nobody could even touch me,” she said. “Even if my mom gave me a hug, there had to be something between us … I was in the hospital, when I got admitted for transplant, for 144 days.”
This long recovery process coupled with Lumapas’ weakened immune system from the transplant caused her to later get the BK virus, a virus common in kidney transplant patients that can cause damage to the kidneys.
She said while her doctors worked to preserve her remaining kidney, Lumapas ended up losing her kidney after a severe case of pneumonia in the spring.
While she was aware she had pneumonia during winter break 2013, she chose to not reveal her illness in order to care for her mother, who was diagnosed with a fatal cancer when Lumapas was 10 and whose health was deteriorating.
Eventually, however, Lumapas said she reached a point during the spring when she could not walk from her couch to her front door without losing her breath, forcing her to go to the ER.
While she was in the hospital, her mother passed away.
“I couldn’t go to her funeral,” Lumapas said. “I tried, but I couldn’t breathe without the machine (at the hospital).”
Lumapas later began dialysis and will continue to do so until she can find a matching living kidney donor.
Truong said while there has been interest from potential donors in a transplant, none have made it through the process to determine if they could be a matching donor. Unlike Lumapas’ bone marrow transplant, there were no matches through hospital registries either.
Lumapas said students who are interested in being a potential kidney donor can find more information on kidney transplants through Tampa General Hospital’s living kidney donor program.
“There are conditions that (donors) need to consider,” Perlman said. “The major considerations of being a donor are health insurance coverage or being out of work … for as long as six weeks.”
Truong said students who are not interested in being a donor can also support Lumapas’ campaign through its Facebook page, attending future campaign events or just making announcements in class.
She said if all goes well, the Share Your Spare Facebook page should also feature a video with a fuller history on Lumapas later this week.
“You don’t know where the (future) donor is,” Truong said. “Everywhere we go, we just try to talk about it. You might not even know that the person sitting next to you, or your best friend … has been thinking about it for a while.”