The New Normal: Meeting the Challenge of Multiple Limb Loss
December 2017 Issue
By all accounts Sue Stull should have died August 12, 2014.
Stull, then 41, was experiencing flu-like symptoms Wednesday evening, August 6, including a sore throat and soreness all over her body, particularly in her neck. She continued to feel ill and at 1:30 Friday morning, Stull's husband, Jay, took her to an emergency room near where they lived in Choctaw, Oklahoma. The ER physician diagnosed her with a viral infection and told her she would feel worse for a few days before starting to feel better.
By Saturday, August 9, Stull's condition had deteriorated to the point that it was an effort to walk and she returned to the emergency room with extremely low blood pressure and severe pain in her arms. The physician suspected she had urosepsis from a urinary tract infection and she was rushed to an ICU in Oklahoma City 30 minutes away. Stull was in full septic shock and her organs were shutting down. Three days later physicians told the family to say their final goodbyes, as she was given less than a five percent chance to survive.
"I told Sue she had a very bad infection and it wasn't looking good. I told her it was okay if she didn't want to fight anymore," Jay says.
The couple remembers that she opened her eyes and gave Jay a dirty look, indicating that she planned to keep fighting for her survival.
Stull's "miracle of miracles," as her family calls it, arrived later that evening in the form of an intravenous immunoglobulin (IVIG) treatment, which helped her body begin to stabilize. Her condition gradually improved—but not without paying a high price: she underwent bilateral transtibial and bilateral transradial amputations in September 2014.
Unique Challenges Arise
Stories like Stull's are becoming more common.
Survival rates from life-threatening infections such as meningococcal septicaemia and necrotizing fasciitis, and from battlefield trauma have increased due to advancements in medical technology. Severely wounded veterans of the Iraq and Afghanistan wars, who would have died from their injuries in previous conflicts, are now surviving at unprecedented rates thanks, in part, to advances in battlefield medicine, better body armor, rapid medical evacuation, and modern resuscitation techniques, according to Zach Harvey, CPO, Creative Technology Orthotic & Prosthetic Solutions, Denver. Prior to working in Colorado, Harvey spent seven years at Walter Reed National Military Medical Center, Bethesda, Maryland, working with a comprehensive medical team to address rehabilitation and re-integration of service members who had sustained limb loss.
Though multiple limb loss is one outcome of these injuries and illnesses, remarkable advances in rehabilitation techniques have changed what those in O&P can expect for individuals with multiple limb amputations. Management of patients with triple or quadramembral amputations presents unique challenges as prosthetists choose appropriate devices for their patients' needs, and help them find creative methods to don and doff their devices and to live independently.
The New Normal
Long before patients don their first prostheses, they have plenty of other things to worry about. Prostheses are only one piece of the sudden changes a prosthetist's patient and family members are going to have to address. If the patient was working before the illness or accident, for example, employment becomes an issue, Harvey says. Other factors include learning to drive again, home modifications, medical aids, daycare, and finances.
"All that goes along with their now new full-time job of rehab and recovery," Harvey says.
One of the first things a prosthetist does is introduce the patient to a peer who has multiple limb loss. "There's a lot that people who have experienced multiple limb loss worry about, and a lot of learning they have to do, especially in that first year," says Kevin Carroll, MS, CP, FAAOP(D), vice president of prosthetics for Hanger Clinic, who is based in Orlando, Florida, and has worked in O&P for 30-plus years. "When we introduce a peer with a similar situation, it sets people's minds at ease right away. They can begin to see that there is life after a catastrophic illness."
Tony van der Waarde, CP(c), chief prosthetist and founder, Award Prosthetics, Burnaby, Canada, has worked in O&P all over the world since 1970. He has owned and operated Award Prosthetics since the mid-1990s. He says before he begins to consider "the nitty-gritty of prostheses and component choices," for his patient, he arranges a simultaneous visit with a peer counselor who has experienced the same type of limb loss. van der Waarde has gone as far as holding luncheons and other events in and around his lab for the benefit of getting everyone together.
"That's the best medicine," says van der Waarde, who also says one of the biggest challenges facing a new patient is psychological. "Getting dressed in the morning to face another day sets the tone of realizing that your body still has the same missing body parts that will make you content or angry because of what has happened, which in some cases could have been many years ago," he says. "Direct interaction with several similar amputees is one of the best things that can happen for them."
Though Jay and Sue Stull agree about the importance of such meetings, their first encounter with a peer left Sue devastated and demoralized, Jay says. "While we are grateful she took the time to visit with us, it was a disaster," he says. "She was in a wheelchair, didn't wear any of her prostheses, and quite honestly told Sue she was content being in a wheelchair. And wearing and using prostheses was difficult to nearly impossible to function with, so she had no desire or intention to use them."
Stull and her husband knew they would take a different approach when they became mentors. "As Sue started the prosthetics process, we knew we had to do better, and that other people who are dealing with multiple limb amputations and their families need to know there is hope, there is life after amputations and not merely existing," Jay says. "We always tell people ‘life doesn't come with an instruction manual,' so we simply do the best we can every day."
When it comes to being a peer counselor, Pedro Pimenta takes the same approach. He was 18 years old and living a full life as a teenager in Brazil, when he contracted a near-fatal form of meningitis in September 2009. Pimenta left the hospital six months and two comas later with quadramembral amputations.
"The world looks at you the way you look at yourself," says Pimenta, who came to the United States in 2012 to continue his rehabilitation and now lives in St. Petersburg, Florida.
Pimenta, who is a certified peer mentor through Hanger Clinic's nationwide AMPOWER program, says he takes timing into account when talking to a new patient with multiple limb loss for the first time. "If it's too early it can be problematic," says Pimenta, who remembers talking with his peer counselor, a man with bilateral transtibial amputations, for the first time while "I was still trying to digest that I had lost all of my limbs."
Building Hope, Building Trust
For prosthetists, sugar-coating the extent of their patient's limb loss is not an option.
"I try to give them a realistic picture of the new normal of what using a prosthesis will be like," Harvey says. "That can include timelines of care, what living will now be like, and expected issues that they'll have to deal with, such as pain, changes in fit, and potential setbacks."
Harvey says it's imperative to stay optimistic, but not unrealistic. "It's important at this stage to inspire hope and inspire confidence," he says.
Building trust through education is also another important matter, Harvey says. "Trust becomes an issue when there are options and I'm explaining why I am making certain decisions regarding prosthetic choices."
In terms of realistic expectations, nearly all the patients that Rick Riley, CP, FAAOP, former owner of Prosthetic Consulting Services (PCT), Washoe Valley, Nevada, treated over more than 30 years in O&P had an accurate appreciation of their circumstances. "Almost all the quad amputees I have worked with see the reality of either adapting to their world or being cared for is a constant reminder of separation from the rest of humanity," says Riley, who retired from PCT in January 2015 and acts an expert witness for O&P legal cases.
As with van der Waarde, Riley is also an advocate of connecting new patients with multiple limb loss with peers. "I am very honest that connecting a quad amputee to another who has experienced independence will help more than anything," he says. "There is a very basic human concept that if they see someone else succeeding, then their chances of adapting are far better."
If the prosthetist wants his or her client to be successful and the prostheses to work optimally, "then figuring out where the amputee is mentally will determine your success," Riley says. "If you put myoelectric arms on a new quad amputee without body-powered or passive options, it is likely that you have sentenced that person to a lifetime of non-prosthetic use."
In addition, often just creating prostheses for a client is not enough to give the person a sense of restored independence, says Riley, who lost his right leg in a motorcycle accident in 1974.
In 2012, Riley provided prosthetic services for a 52-year-old woman who had quadramembral amputations because of toxic shock syndrome. When his client came to PCT, she had already been provided with multiple prostheses. In addition to problems she was experiencing with her prostheses, she had another challenge: she was unable to don any of them independently.
Even though the woman's previous prosthetist had provided the devices, there had been no follow-up to determine how well or if she was able to use them, Riley says. "This was a failure of understanding of what was necessary to give her back her independence," he says. "Our first step in working with someone who is missing multiple limbs is to find out what they are dealing with at home." Riley traveled to the woman's home in Kentucky. He took pictures of her bedroom, bathroom, stairs, and front yard. One of her concerns was getting up at night to go to the bathroom and having to wake her husband to help her put on her prostheses. Riley and his staff at PCT built their client new sets of prostheses that included regular walking legs, aqua legs, and a pair of aqua arms with interchangeable terminal devices for specific activities of daily living such as washing or grooming, as well as another set of terminal devices that she would use to swim and play ball sports. While these devices helped her accomplish tasks more easily, she still could not don or doff her prostheses on her own, Riley says. The biggest challenge they encountered was creating a solution for a patient with no hands to don a locking liner, he says. The PCT team decided that a custom donning station would solve a lot of her problems. They built the customized station, which included mounting the storage cones that come with Silipos liners on an angled rack. "She could just get her below-elbow stumps to unroll the locking liners from the cones and don them while lying on the bed," Riley says. The PCT team also placed a wedge-shaped piece of wood in her custom donning station that hooks above her ankle to hold her prostheses while she disengages the shuttle locks and removes her prostheses. There are drawers to hold her socks and arms so that all her equipment is together in the same place. "This custom donning station allows a person with all four limbs missing to don and doff their prostheses independently," Riley says. "This gives them back their dignity as well as improves their personal safety."
Sepsis, Here for the Duration
In Riley's career, he has worked with eight people with triple and quadramembral amputations, six women and two men. His practice specialized in working with people who had multiple amputations and the number of patients with triple and bilateral amputations totals in the hundreds. "The quad amputation is rare, but is becoming less rare," he says. "Twenty years ago, people with sepsis died. Today, they are being saved, but multiple amputations are becoming more common." Carroll concurs. "Because of advances in medical technology, people will continue to live through catastrophic and unbelievable situations," he says.
Wherever You Go, There You Are
There are those with multiple limb loss who cope with adversity better than others. Though their clients may struggle for independence, "This is what I discovered that everyone in this situation strives for," says Riley. "The key to independence is a knowledge of the person's daily needs and developing prosthetic solutions, not just making prostheses out of a book. Creating prosthetic devices requires imagination and enough experience that the practitioner can create devices from non-prosthetic materials."
Of course, the support the patient gets from family and friends cannot be underestimated. "Clients who have a great team of surgeons, therapists, nurses, and family members to ease the transition are fortunate. For some of my clients, I've had to play the role of case manager, social worker, therapist, and cheerleader when those resources are not available," says Harvey, who once bought a platform walker off Craigslist for one of his clients with quadramembral amputations. "This walker has made all the difference for him," Harvey says.
As for Pimenta and Stull, they share a positive attitude and have refused to allow their disabilities to ruin or rule their lives. Stull was walking on her first pair of prostheses just three months after her amputations. She has come a long way since her recovery and rehabilitation began in the ICU more than three years ago. She has gone skydiving and snorkeling. She has strengthened her body through countless hours of CrossFit training. Stull says she wouldn't have come as far as she has without her husband's help. "I tried to get better as fast as I could, but I couldn't have done it without his support. He's kicked me in the butt when I've needed it." Jay retired from the Air Force in 2010 as a lieutenant colonel. Together, they have made it their full-time job as motivational speakers to educate others to the dangers and susceptibility of sepsis.
Pimenta, whose family remains in Brazil, lives alone and does all his own housekeeping and laundry. "There's nothing adaptive about this place, nothing in the kitchen, nothing in the bathroom," says Pimenta, who uses body-powdered devices for his upper limbs. He also travels worldwide as a motivational speaker and until recently served as the marketing director for Camp No Limits, where he participated in eight camps this year. "I see myself as an athlete," says Pimenta, who played soccer while growing up in Brazil. "I try to take good care of my body to stay as healthy as I can. All that plays into who you are."
Betta Ferrendelli can be contacted at firstname.lastname@example.org.