Never Give Up
Noreen Miller, Sumner, is no stranger to surgery. At a very young age, she was diagnosed with neurofibromatosis (more commonly known as NF or the “Elephant Man’s disease”), a genetically-inherited disorder in which the nerve tissue grows tumors (neurofibromas) that may be benign and may cause serious damage by compressing nerves and other tissues.
“When I was five, I started developing tumors all over my body that affected my bones and nerves. Luckily for me, my tumors are not cancerous like other people have. My parents were told I wouldn’t live past my fifth birthday and now I’m married to Tom, have four adopted children and eight grandchildren. Guess I proved them wrong!”
Starting at a young age, Miller underwent surgery about every five years to remove tumors. She also had surgery as one leg was shorter than the other due to an internal growth issue. Unfortunately, Miller didn’t have a typical childhood due to a life-filled with therapies and surgeries.
“A surgery would typically produce swelling, which then caused me to be bed-ridden to get the swelling down. It would be alright for a while. But, then, I would have another surgery and the swelling would start all over again. It was a vicious cycle,” Miller recalls.
Eventually, the swelling caught up with Miller and no amount of resting would work to reduce it. She visited with her surgeon and he diagnosed her with lymphedema, a condition of localized fluid retention and tissue swelling caused by a compromised lymphatic system. The most common treatments for lymphedema are a combination of manual compression lymphatic massage, compression garments or bandaging.
“I knew I wanted somewhere close, and Jennifer Fuentes of Palmer Rehab Services in West Union was recommended as she specialized in lymphedema,” Miller says. “I didn’t even know what lymphedema was and had learned to just deal with all the swelling on my body. I didn’t believe anyone could do anything about it.”
From the get-go, Miller fell ‘in love’ with Fuentes, “She was so patient with me. She treated me like a person and not just a number to get through her day. When I first met with her, she wanted to get to know me and my life and not just jump right into her job of ‘fixing a problem’. Having been in and out of hospitals my whole life, this was a change for me.”
In fact, Fuentes began with educating Miller on what lymphedema is and how the lymphatic system works. As opposed to other lymphedema patients, Miller’s swelling doesn’t produce water and/or leak; however, Miller did learn she would have this condition for the rest of her life. Once Miller understood the ‘why’ behind the disease, the pair then began working on the best tools to use for Miller’s individual diagnosis.
“Jennifer said that some patients need socks; others use bandages; others use boots. We worked together to create the best compression for me. Considering what I’ve already been through, this wasn’t anything. I like to do as much as I can for myself. I’ve went from a cane to crutches to a walker to a wheelchair. Then, I have surgery or start feeling better, and I’m back to a cane for a while. But, our home is wheel-chair accessible so I am able to continue getting around.”
In addition to the compression provided by the bandages, Fuentes taught Miller exercises for fluid circulation and breathing and massage techniques to help with the swelling.
“There are so many different types of wrappings that I didn’t even know where to start,” Miller explains. “That’s where Jennifer came in. She worked with me and we figured out what I needed. I have different stocking for day and for night. No matter what I was dealing with, Jennifer was right there the whole way. If it wasn’t for her, I’m not sure where I would be right now…a nursing home maybe?”
“Noreen was newly diagnosed with lymphedema after a lifetime of medical complications. She had multiple surgeries and complications in the past, but lymphedema was new territory for her. Together with her husband Tom, we were able to develop a compression bandaging program that worked for her taking into consideration her orthopedic problems at her hip joint as well. Many modifications and "fine tunings" were needed to her bandaging program and custom compression day and night time garments to find what would work best for her situation. She was perseverant as she knew the results she had already seen and knew that she needed to stick with the program. We were able to work with two different garment companies to modify her custom garments to improve her outcomes, comfort, and fitting,” Fuentes states.
Finishing, Miller explains, “I never want to be the lady who gives up. With my past, I have always tried to do as much for myself as possible.. And, with Jennifer’s help, I can!”