Amputee’s Peer Support Group Open to All
December 2019 Issue
Lisa Sewell has a host of medical issues, but she doesn't spend a lot of time focusing on them. She has chronic asthma, diabetes, and bilateral transtibial amputations due to peripheral vascular disease; the latest surgery was on her right leg in September.
Sewell's left leg was amputated in June 2016. After more than three decades of steroid use to manage her asthma, she developed steroid-induced diabetes, which eventually resulted in arterial blockage in her left leg. She went to a podiatrist early in 2016 because of an ingrown toenail, but after several months of pain and failed treatments, Sewell was forced to have her toe amputated. "One week after my amputation, an infection of dry gangrene had started to spread up my leg," says Sewell, 56, a resident of Frederick, Maryland.
To stop the infection, she agreed to a transtibial amputation. The morning after her surgery she was awake and alert and able to meet with her first prosthetist, John Jacobs, CPO, with Ability Prosthetics and Orthotics in Frederick. He told Sewell he appreciated being able to speak with her directly because his first encounter with a new patient is often through family members—the patient is usually still recuperating after the amputation and unable to understand the next steps in the rehabilitation and recovery process.
However, Sewell's fortitude doesn't surprise Courtney Cox, CPO, who became Sewell's prosthetist in June after she completed her residency. "I knew the moment I met Lisa she was a force to be reckoned with. Her outlook and attitude during all our time together is so positive and uplifting," Cox says. "She is the kind of person who takes a situation and instead of trying to make the best out of it for herself, she uses it to find a way to help other people."
Having gone through the ordeal of her first amputation, Sewell says she knew what to expect with the second one. "Due to long-term steroid use I don't heal quickly," she says. "In April, I noticed a wound on the back of my right leg that wouldn't heal and one of my toes had started to change color due to lack of blood flow." Recalling the amount of pain she was in before her first amputation, Sewell says she didn't want to use pain medication that would leave her sleeping most of the day or in a constant stupor. "That's not what I consider quality of life," she says.
Sewell had a candid talk with her surgeon. "I told him I did not want to go through multiple surgeries just to end up with what I knew would be an amputation of my right leg."
Over the summer, Cox worked with Sewell on a replacement socket for her left leg, which involved being fitted with a test socket before moving to a carbon fiber suction socket by Össur, Reykjavik, Iceland. The socket also sports a custom Dallas Cowboys lamination, a design that was done by Florida-based Fred's Legs. The process for the prosthesis on her right leg, which will also include a Dallas Cowboys lamination, will begin when her physician clears her to start shrinker care or to initiate treatment for her prosthesis, Cox says. "This is generally done once the staples have been removed from her incision".
Sewell's recovery from her latest amputation continues a steady pace forward. "It's great," says Sewell, who came home less than two weeks after her surgery. She has started physical therapy, practices standing on the prosthesis on her left leg, and she is also cooking light meals. "It's a huge accomplishment being able to stand on one leg," she says.
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Cox says she was available to help Sewell in preparing for her amputation, but it was her patient who did the majority of the work. "I was available for any questions she had about the process of getting her second prosthesis," she says. "But even when she told me she was having her other leg amputated, it was almost as if she was preparing me so I'd be ready when she was ready to get a prosthesis for that side."
Sewell says she knows the importance of receiving good support from others.
After her first amputation, Sewell wanted to join a local support group for people with limb loss. However, an online search in the fall of 2018 came up with no results found. "I couldn't believe there wasn't anything here in Frederick," she says.
Sewell modified her request to a broader search, "support for amputees in Maryland." "What I got was classes on diabetes nutrition and dementia support, all of which were located in an area 50 miles or more from my home," Sewell says.
Her next search brought her to the Amputee Coalition website where Sewell found helpful information to start a support group in Frederick, as well as the benefits of becoming a certified peer visitor. With encouragement from her prosthetists, Sewell became a certified peer visitor with the Amputee Coalition. "Being able to encourage another amputee that they are not alone in this journey is what keeps me living," Sewell says. "It gives me purpose, and it reminds me that I have work to do every day."
Peer Support for Amputees
Once Sewell got over her frustration with the lack of support in her community, she began sharing her vision for a support group with others she thought could point her in the right direction. "Although I have an amazing support system, there are so many people who feel alone and don't know how to move forward," she says.
Sewell formed the Peer Support for Amputees group with one small stipulation: the group wouldn't be limited to people with amputations. The motto for the group is simple: "Navigating your new normal doesn't have to be done alone."
She held her first meeting in January at the library in Frederick. Except for those who were there to support Sewell, no one else attended. "It was just me," she says.
At the next meeting in February, one person attended, not someone with an amputation, but a caregiver for a family member. Not long after the second meeting, Sewell received a telephone call from a woman who wanted to attend the support group. "She wasn't an amputee," Sewell says. "She had a spinal cord injury and she wanted some place to go."
The support group has grown steadily to include those with amputations, caregivers, a stroke survivor, a person on dialysis, and a heart transplant recipient. The caregivers who attend the group find the support it offers to be beneficial, Sewell says. "We wanted anyone who comes to know this is a place where they'll be heard," she says.
The peer support group also thrives because of its diversity; men and women of all ages, background, interests, race, and ethnicity attend because the door is open, Sewell says.
As one man told the group during a meeting, "The diversity of this group is unique," he said. "The one thing we have in common is we all have suffered loss. In spite of that loss we have hope that life still goes on."
Sewell was confident the support group would become important for people in her community—only she didn't realize how much of an impact it would have. "In short," she says, "you come to the group and share your stories and experiences, get information, and, most of all, leave with hope that no matter what your new normal is, you don't have to navigate it alone, and you are not defined by your circumstances or your situation."
Betta Ferrendelli can be reached at firstname.lastname@example.org.