WEST WARWICK – When she was 28 years old, a trip to the emergency room for chest pains revealed that Susan Flesia had polycystic kidney disease (PKD), a diagnosis that would go on to drastically alter her extremely active lifestyle. Now, at 56, Flesia, a former champion body builder and personal fitness trainer in Narragansett, stills finds ways to remain physically active despite frequently undergoing home dialysis to keep her blood clean and body functioning. A unique case, Flesia is the first person in the state to perform the procedure entirely by herself and without the aid of a caretaker or home nurse.
“Sure enough, they found cysts all over both of my kidneys and my liver,” said Flesia, who immediately underwent additional testing upon her initial trip to the emergency room 28 years ago.
PKD is a common hereditary disease that causes liquid-filled cysts to grow on the body’s kidneys. The disease, unlike traditional kidney cysts that can form at old age, can cause swelling in the kidneys from the growing of the cysts, likely resulting in kidney failure. Due to the cysts’ ability to continuously grow and regrow, the condition is thought to be incurable outside of a new kidney donation. Flesia currently lives without kidneys and has been on the waiting list in Rhode Island for a donation for four years. Unfortunately, due to the hereditary nature of PKD, Flesia’s family cannot help her in this capacity.
“My daughter has PKD, unfortunately,” said Flesia. “So obviously, she can’t give me a kidney. My son doesn’t have it. But my granddaughter could have it, and my son can’t give me a kidney just in case my granddaughter has it.”
A native of Pond Street in Wakefield, Flesia began her bodybuilding career while living in Washington state with her then-husband.
“One day while working out, I saw this woman and she was just built,” Flesia recalls. “She looked incredible. I went up to her and asked if she competed professionally. It turned out she was Miss Northwestern at the time, and I asked her about her training routine, and she told me how using free weights would get results quicker. So I started weight training and I fell in love with it.”
Flesia began with Nautilus-manufactured machines, such as the Bowflex, and soon took the budding passion a step further by reading fitness magazines and boosting her training regimen. She then moved to Colorado, where she began teaching aerobics while working at a local gym and entering into bodybuilding competitions. When her marriage ended, Flesia moved back to Rhode Island with her two children in 1988 and began working at River Bend Gym in South Kingstown. Now, having professional body building titles under her belt, Flesia was the one other women were approaching at the gym for advice.
“Before I knew it, women were now coming up to me and asking the questions,” she said. “So now I’m showing other people how to do this.”
Not long after, Flesia became certified to become a personal trainer and took a job at Italian Village in Wakefield. Her first official client was her 72-year-old neighbor, who she began instructing three days a week on a home-gym apparatus.
“Before you know it, I had more clients,” she said. “I got one of the big white boards with a magic marker. I had to keep track of everyone. I didn’t really think it would go beyond that.”
But it did, and Flesia’s business soon expanded. At the time, Flesia was training Paul and Barbara Schurman, who offered her space in Mariner Square to start her own fitness studio.
“Paul said he would build the studio how I wanted it,” recalls Flesia. “He even co-signed a loan for all the equipment. The arrangement was he was going to get the business started and once it grew, I would begin to pay him rent. Again, I went for it. I said ‘what do I have to lose?’ I knew I couldn’t waitress for the rest of my life.”
The business flourished, and Flesia built a home on South Pier Road in Narragansett. Everything was going smoothly, until she began experiencing chest pains one evening. A trip to the ER determined them to be simple indigestion, but further examination, including an ultrasound of her kidneys, revealed a cyst-filled infection in the organs and her liver. Eventually, after additional testing, Flesia was diagnosed with PKD. Due to her physical condition and lifestyle, combined with medication, she was able to combat the debilitating disease throughout most of her 30s. Unfortunately, by the time Flesia turned 40 years old, the illness was beginning to have more of an effect, with its symptoms, which include weight gain, swelling, back aches, nausea, unstable blood pressure and stomach pain, seemingly amplified.
“A kidney should be about a half to a quarter pound and be the size of your fist,” said Flesia. “One of my kidneys was six pounds.”
Ultimately, Flesia had to give up her business after 21 years of operation in Narragansett, as she was no longer able to physically keep up with her clients due to the disease’s aggressiveness. She recalls one particularly painful memory in which she could not keep pace during a run along the Narragansett Sea Wall.
“That was devastating,” said Flesia. “I’m very physical. I’m always doing things and so not being able to do anything was very frustrating. Here I am, a fitness trainer, and I could only last three minutes on a treadmill.”
In 2016, Flesia had one kidney removed, after the organ swelled so much it was pushing against her lung and causing difficulty breathing. After, studies showed her remaining kidney was operating at 4 percent efficiency, prompting an immediate need to begin dialysis treatment. Flesia underwent a few different methods, but eventually enrolled in Fresenius Kidney Care in Warwick.
“I met a lot of nice people in the clinic,” she recalls. “I ended up going to a few wakes. I didn’t like being around that. I would start crying while I was in the clinic. It’s tough. I like to be around happiness all the time.”
One day, with her disease keeping her out of work and her schedule clear, Flesia exited the clinic after undergoing dialysis treatment and discovered a recreational vehicle in the parking lot. The RV was exhibiting dialysis machines from healthcare company NxStage that are designed specifically for personal use within the home. Flesia demonstrated an interest and applied to join the program, and before long, was selected, undergoing an eight-week training session at the clinic detailing the machine’s functions.
“I’ve been my own advocate throughout this,” she said. “I’ve been on top of it.”
Since September, Flesia has conducted her own dialysis treatment with the machine four to seven times a week within her home in West Warwick, inserting a needle into her arm, draining a large amount of blood and filtering it through the machine to screen out toxins and waste before pumping the blood back into her body. The machine assumes the full role of normal kidney functionality. The whole process takes anywhere from two and a half to four hours, during which Flesia is completely stationary, relying on television, phone calls and reading to pass the time. She is the first person in the state to carry out the procedure at home without the assistance of a caretaker or healthcare professional.
“The only time a nurse comes is if I need to start a new tract in my arm to insert the needle,” she said. “When I have to do that, the nurses come in and get it started and then I take over.”
“Everything about having the machine was positive,” Flesia continued. “Because of the PKD, I have to account for everything I eat. But with the machine at home, I now have a little more flexibility. I drink a little more fluid if I want. I have more freedom in my diet and liquid intake.”
In 2017, Flesia had her second kidney removed, and now entirely relies on home dialysis for normal body functionality. While she has waited on the kidney donation list for a number of years, it still could be a few more before she is considered for a donation absent a living donor, and Flesia doesn’t want to spend the rest of her life dependent on the machine - she has things to do. An avid admirer of the outdoors, the fitness trainer maintains a lifestyle today that includes gardening, exercising, motorcycle riding, target shooting and swimming–activities she hopes to spend more time doing, along with spending time with her boyfriend. The dialysis treatments, meanwhile, take a toll on Flesia, causing extreme fatigue, pain and migraines after evey session.
“I hope I can give people inspiration to still try despite what they’re going through,” she said. “I still exercise. There are some days I can’t, but I still go for it on the days that I can.”
Flesia is currently in search of a potential kidney donor with Type O+ blood type. If interested in assisting, please contact Rhode Island Hospital’s Living Donor Team at (401) 444-3091.