Julie LeVoir will never forget one of the first meetings with her doctor at the Mayo Clinic after beginning home infusion therapy to treat her congestive heart failure.
“He told me that he had never seen an X-ray like this,” Julie said. “He originally took the X-ray back to see if it was the wrong one. My heart was overly enlarged and it shrunk so much. Without this drug, I wouldn’t be alive.”
Julie, 66, who lives with her husband in Minneapolis, receives inotropic medication 24-hours-a-day from the comfort of her own home. The drug is infused into her chest. The medicine stays with her at all times in a bag similar to a fanny pack.
“At first I didn’t know if I wanted to carry medication around, but I was so sick at the time,” she said. “I’ve adjusted well to the medication. It’s like my partner; I don’t forget it.”
Some Medicare patients, though, may no longer receive the same home infusion care that Julie does because of a gap in coverage in the new 21st Century Cures Act. These patients may spend more time in hospitals and have to consider alternative living arrangements.Take action to amend the Cures Act
“I would be afraid at what would happen if I went off this medication,” Julie said. “It’s what keeps me well and feeling almost like a normal person.”
Of course, Julie was never a “normal person” per say. She owned three beauty shops and was a perpetual blur of motion. With her husband of 45 years, Tom, they raised two girls and are blessed with six grandchildren.
“She’s a Type A personality,” Tom said. “She could work 12 hours without taking a break.”
Added Julie: “I worked hard, played hard and partied hard.”
Julie’s health began to turn in the 2000s when she was diagnosed with breast cancer. In 2010, she first experienced heart problems and originally was told she only had two years to live. Her litany of health challenges includes battling diabetes and she has endured four eye surgeries. She also is legally blind.
As a result, the dynamics of Julie and Tom’s marriage have experienced a complete role reversal.
“I used to be his one-day laundry service while he played sports all the time; he was very spoiled,” Julie said. “Now, he cleans, cooks and goes grocery shopping. He’s the one that spoils me rotten.”
Now that her health has improved, she still makes time to cut the hair of three to four of her long-time clients each week.
From her home, of course. “I could do this in my sleep,” she said.
“I would be afraid at what would happen if I went off this medication… It’s what keeps me well and feeling almost like a normal person.”