Phoebe LeDoux didn’t mind that the fanny pack she wore to her granddaughter’s wedding didn’t match her silver dress, sequined jacket and sparkly shoes. Without it, she wouldn’t have been able to go. It holds the lifesaving medication that helps her failing heart keep working.
She started receiving around-the-clock home infusion of the inotropic medication in June 2016 and now is looking forward to a summer family reunion in Clarksdale, Mississippi. It’s the first one she’s been able to attend in five years. She’s anticipating seeing more than 100 relatives on her mother’s side, some of whom she’s never met.
“Family is definitely the most important thing,” said Phoebe, who has six children, 12 grandchildren and eight great grandchildren. Many of them will go with her to Clarksdale, where the three-day event features “meet and greet night where everybody yakity yaks, hugs, and gets t-shirts; a picnic and banquet; karaoke; and a talent show and church service on the last day.”
Phoebe, 75, of Naperville, Ill., worked hard her whole life, including as a correction’s officer at a prison, a certified nurse assistant in hospitals, and doing home healthcare. Twenty years ago she told a doctor she was extremely short of breath walking from the parking lot to his office. After testing, she was diagnosed with idiopathic cardiomyopathy, a thickening of the wall of the heart. She had a pacemaker implanted, but has had numerous setbacks that weakened her heart. Phoebe has since been prescribed inotropic infusion, which she is able to receive at home.
The medication is delivered weekly and is infused through a port in her chest. Her son, Anton, visits her daily to change the bag and a nurse visits weekly. Phoebe has Medicare, but because of a gap in coverage created by the new 21st Century Cures Act, some Medicare patients may not be able to get the same home infusion care that Phoebe does. They may have to stay in the hospital or at a nursing home to receive the care. Phoebe says if she was in that situation, she would have to forgo treatment. “I won’t do that, I won’t go into a nursing home,” she said.
The medication is working so well that Phoebe says her doctor was able to lower her dose.
Now she drives, runs errands and spends three hours every Sunday at church. “I’m doing pretty good – I live normal,” said Phoebe. “I got up at 7 o’clock this morning, drove to the beauty shop, and the heart clinic and came home and made myself lunch.”
“I won’t do that, I won’t go into a nursing home.”