Two years ago, the simple act of brushing her teeth would leave Cindy Murphy so exhausted she would have to take a nap afterwards. Her heart, weakened by two heart attacks, was functioning at one quarter its normal capacity, her kidneys were failing and her hair was falling out. That’s when doctors put her on around-the-clock inotropic infusion to help her heart work more effectively and sent her home to await a new heart.
“I was really surprised they let me go on home infusion, but it’s wonderful that I could,” said Cindy, 58, of Chester, Conn. “It gave me a lot more energy and put me back in action. I get tired easily, but I’m able to be out and about.”
Today, Cindy’s heart is pumping more effectively, her kidney function is almost normal and her hair has grown back. She now has energy to go shopping and do puzzles with and read to two grandchildren who live nearby.
Cindy had her first heart attack at age 38 and her second at 42, after which she learned she had a blood clotting disorder that was the root of the problem. She’s had stents placed to prop open her blood vessels, has been on various medication and had her mitral valve replaced six years ago.
But her heart continued to weaken. In 2015, she began home infusion and is now on the heart transplant list.
She used to work as the office manager for a reproductive endocrinology office but had to go on Medicare and disability after her second heart attack. Due to a gap in coverage created by the new 21st Century Cures Act, some in Cindy’s situation cannot receive home infusion. They may be forced to get it at a nursing home or the hospital, something Cindy can’t imagine, recalling her difficult and lonely days in the cardiac intensive care unit. “No visiting grandchildren, which is tough. Kids really kind of lighten the mood.”Take action to amend the Cures Act
Cindy is surprised legislators haven’t fixed the law to close the care gap. “I can’t imagine how people who are able to be relatively independent could possibly take to being confined in a facility,” she said. “It would be a rough way to wait for a new heart and cost-prohibitive.”
She receives the 24-hour infusion through a port in her chest. A visiting nurse comes once a week to change the needle and tubing for her infusion. She carries a fanny pack that houses her medication.
She keeps busy doing Sudoku and reading – any novel will do and she especially enjoys poetry, Maya Angelou being her favorite poet. Helping a landscaping business with their books and doing taxes for friends “gives me a chance to use my brain,” she said. “But no reading right now until I’m done with taxes!”
“I can’t imagine how people who are able to be relatively independent could possibly take to being confined in a facility… It would be a rough way to wait for a new heart and cost-prohibitive.”