Home Nutrition Support and Medication Infusions Help Her Fly
Tethered to an intravenous (IV) line providing near-constant infusions of everything from nutrition, saline and glucose to pain medication, Bettemarie Bond used to feel “like a dog on a leash.” But she’s come to appreciate everything the therapies allow her to do.
“They’re like wings – they keep me alive and allow me to fly,” said Bettemarie, 46, of Levittown, Pa., an Option Care home infusion patient who suffers from mitochondria disease (“mito”), a rare illness that causes malfunction of the energy source of every cell in the body. Debilitating and progressive, it causes a constellation of problems that result in exhaustion, muscle weakness, brain fog and severe gastrointestinal issues. Other than the occasional bite of fat-free ice cream or whipping cream for the pleasure of it, Bettemarie is unable to eat. She has been sustained by IV parenteral nutrition (PN) for 27 years – with one five-year respite – which she is thankful to receive at home.
Despite suffering from significant physical hurdles since she was a teenager – including numerous surgeries and stays in the hospital – Bettemarie refuses to give up. When told by doctors and others that she would never finish school, live on her own or work, she proved them wrong. She graduated from Temple University with a degree in occupational therapy (OT), worked at a school providing OT to young children with developmental delays and as a gymnastics instructor and bought her own house. While she is no longer able to work, she volunteers, advocates for people with challenging health conditions, attends medical conferences and once a week, rides horses as part of physical therapy.
Her support system includes her brothers, one of whom bought a house nearby, her sisters-in-law, her nieces, nephews and her parents, who live a mile away and help with daily activities such as laundry, housecleaning, driving and shopping. And her black German Shepherd, Voxi, is not only a companion but a lifesaver.
“One time in the middle of the night my pump stopped working and she kept trying to wake me up and finally put a paw on my pump, which she never touches, and that got my attention,” Bettemarie said. “Sometimes when I shower my sugar levels drop, and although Voxi was never formally trained, she stays in the bathroom to be sure I’m OK. If my sugar goes low, she barks like crazy to let my mom know.”
She’s also appreciative of the support of her entire Option Care home infusion team. She is thankful that the delivery people put her life-saving nutrition and medications in the refrigerator rather than just dropping off the box at the door and the reimbursement specialists help her apply for financial assistance to cover out-of-pocket costs. Her pharmacist has helped her figure out the intricacies of her care for 15 years. “He takes such good care of me,” Bettemarie said. “My case is complicated but he takes the time to figure out if my medications need adjustment, and will call me immediately with the results of my blood work.” And she is grateful to her Option Care registered dietitian, who not only checks in with her regularly, but helped ensure her care would be paid for when she went on disability and became eligible for Medicare. The dietitian worked months in advance of Bettemarie’s switch from private insurance to Medicare by gathering important records – many years old – to ensure coverage. “I was very worried I wouldn’t be covered, and I’m so thankful to her,” she said. “I am very appreciative and grateful for the team at my local Option Care branch. Their awesomeness allows me to focus on living my life, versus being overwhelmed with my home infusion needs. It’s a whole team effort and each person’s role is vital.”
Although she misses the kids at her former job, staying busy is not a problem. She has volunteered for several groups through the years, including Easter Seals and currently, the Oley Foundation, an organization that strives to enrich the lives of people on home infused nutrition. She assists with the equipment exchange program, finding families with excess food or supplies and arranging for them to be donated to those in need.
She’s also become an advocate. Due to gaps in coverage, Medicare will not cover all of her costly intravenous therapies at home, although they would be covered in a medical facility such as a nursing home. For many reasons – from cost to quality of life – Bettemarie prefers to receive her infusions at home. She was fortunately able to purchase a Medicare Advantage plan through the union at the school where she worked. But that still entails a sizable deductible, and she knows not everyone has access to that level of coverage. So she works hard to change that by advocating and lobbying in Pennsylvania and in Washington, D.C. She’s also the first public member of the Public Policy Committee of ASPEN.
Her involvement hasn’t gone unnoticed. She’s received several awards for her work and dedication. Most recently she received the Oley Innovator/Advocator Award for demonstrating courage, perseverance, a positive attitude in dealing with illness or caregiving, and exceptional generosity in helping others in their struggle with home PN. But that’s not what drives her.
“It’s the people,” she said. “Their stories really bring the reality of these challenges to life. Working together, we can make sure others hear these stories and work to improve healthcare in this country.”