Health and fitness have always been Warwick native Sue Flesia’s passion, as she began body building and personal training as a young woman.
At 28 years old though, things would change forever when a hospital visit for chest pains resulted in a shocking diagnosis. After going through testing, her primary care doctor would inform her that an ultrasound revealed that she had cysts throughout her kidneys and liver, and was diagnosed with polycystic kidney disease, a hereditary condition that is still to this day uncurable.
“It was a freak thing. As I learned, most people don’t even realize that they have it until they start getting high blood pressure around 40 years old. I started experiencing chest pains and drove myself to the ER because I was feeling quite uncomfortable. By the time I got there it had went away so the doctors told me it was probably just indigestion. The doctor that I had at the time decided to do a few tests and found that I had a kidney infection. I didn’t really understand the severity of it at first,” said Flesia.
Thanks to her optimal health and lifestyle, the disease did not immediately take its toll on Flesia. She continued running her business and working out frequently, however, a decade after her diagnosis, she began noticing her rib cage expanding, and also began experiencing soreness in her back and shortness of breath.
Flesia’s doctors once again ran tests, and came to the conclusion that the disease had progressed enough to require her kidneys to be removed. Flesia would undergo her first nephrectomy in November, 2016, and her second in October, 2017.
She would begin undergoing dialysis treatments at Fresensius Kidney Care for four hours a day, three days a week. After two months of treatment, the clinic worked out a system which allowed her to treat herself at home using an NxStage machine.
“I wasn’t for it at first … having to cannulate myself, sticking myself with needles, I didn’t think that I would be able to do it. I did it eventually, it was a challenge, but I learned how because I had to,” said Flesia. “They trained me in the clinic for about eight weeks then began coming to my home for about another six weeks to help me cannulate. I now do dialysis six days on my own. I’m very grateful to have access to the machine at home.”
As the disease progressed, Flesia still trained clients and friends at her gym as well as her home. However, in 2016, she decided that it was time to close down shop and focus solely on her own health.
“It was a challenge. I had my business in Narragansett for 21 years, had very close clients that knew what I was going through, so I was trying to keep up with them. Even just taking walks on the seawall, I had to back off because I wasn’t able to even keep up with my own clients. It was upsetting to me, but I knew what it was and why, I just didn’t realize that it would take so long to get a transplant. It’s been four years, I have another two years left, it’s a process,” said Flesia.
Flesia has began working out once again. Whether it is yoga, light cardio, mobility training or strength training, she has devoted herself to remaining strong mentally and physically as she inches her way closer to receiving her new kidney.
“I’m my own advocate, I’m on top of it. Right now, I’m focused on my own health because when that kidney comes, I want to be ready to accept it. I started working out again three months ago. I do cardio, the stationary bike, I love to lift free weights. I have a nice gym downstairs that I took from my business. I’m limited, but that’s not going to stop me. I do a lot of yoga, mobility training, those little things make a difference,” said Flesia, who stresses the importance of remaining as active you can, even if it is difficult at times. “Some people have the attitude of, ‘Well, if I can’t do it all the way then I won’t do it at all.’ You can’t have that attitude if you want to take care of yourself. That’s what I tell my clients, there’s always something you can do even if it is getting on the floor and stretching. Don’t be stagnant, you need to move. Mentally and physically you have to be stimulated. Without that, you’ll lose your drive and you’ll lose your hope.”
Flesia has been on the waiting list for a new kidney for the past four years, and has roughly two more years remaining unless she is able to find a donor. As the end of her wait approaches, she is already beginning to look forward to getting back to her old hobbies and interests that she has had to put aside for the past few years.
“You know how some people are, perfectionists, we always want more. We have a pool and I love swimming so that’s something that I want to do. I also am a motorcycle enthusiast and I never want to have to give that up because it’s very important to me, it’s a big part of my life. I love gardening too,” said Flesia, who is also appreciative of her friends and family that have helped her on a daily basis. “(My support system) is very important to me. I am very lucky to have so many people there to help. My boyfriend does a lot for me. All of my friends, all of my clients, they’re all so great. They call me all the time, they visit to keep me company.”
Although she has gone through some tough times in the past few years, Flesia continues to make the most of each day, and has kept her spirit high despite the struggles.
“I’m so grateful in so many ways even though I’m going through a tough time. Some people have conditions like liver disease that don’t have machines that can match (what I have). I’m just grateful, the days that I feel good, I take advantage of those days. I’m still working on pacing myself. I’m a go-getter, I’m not a procrastinator. I’ve had to learn patience as well,” said Flesia, who is as confident as ever that she will get back to being her old self, and live the lifestyle that she was always meant to live. “I’m tough. I was a single mother of two kids which taught me to be tough. There’s a light at the end of the tunnel and getting a new kidney is going to make such a big difference in my life. I’m going to get through it, I have so much to live for, so much. Everything works out. I always tell my kids, things always work themselves out. Something positive will come my way.”
Flesia is still searching for a kidney donor while she sits on the waiting list. Any inquiries regarding helping Flesia in her search should be directed to the Fresenius Kidney Care clinic in Warwick.