Roy Lee can almost taste the Lake Erie walleye he’s going to catch and prepare when he gets a new heart and is cleared to go fishing. He misses hunting pheasant, too. But he’s appreciative of the left ventricular assist device (LVAD), and home infusion of inotropic medication, both of which help his weakened heart continue pumping and allow him to live at home while he waits for a new one.
Roy’s heart was severely damaged by two heart attacks he suffered in his late thirties. He had a pacemaker and then a defibrillator placed, but his heart continued to weaken and now a transplant is his only option. Although he was taken off the transplant list when he became sick several months ago, he is nearly finished with the required 12 weeks of rehabilitation that will allow him to be placed back on the list.
He gets the infusion through a peripherally inserted central catheter (PICC) line in his arm around-the-clock, and the medication travels with him in a back pack, which includes the LVAD device and backup unit, his diabetes medication and equipment and the inotropic medication and pump as well as backup supplies. A nurse comes to the house weekly to change the dressing.
Although when he leaves the house Roy has to carry around 18 pounds of supplies, equipment and medication, he’s happy to do it. “They say I need the medication to stay alive, and insist ‘this is serious, you can’t miss any of it,’” said Roy, 57, of Chicago. He appreciates being able to drive, go to the shopping mall or lakefront to people watch and do errands for friends and family who are working.
“I’ll wait for the refrigerator repairman or help manage the renovation of a friend’s house,” said Roy. “They’re basic life duties, but it helps me get out of the house, and I’m thankful the home infusion allows me to do that.”
For 26 years Roy worked in a lab doing photo retouching and creating billboards. He worked as long as he could. He didn’t want to be a burden on society by going on disability and Medicare, but ultimately his weakened heart left him no choice. But a new law called the 21st Century Cures Act created a gap in coverage that means some Medicare patients won’t be able to get their inotropic infusion at home as Roy does. Instead, they may have to stay in the hospital or a nursing home to receive it.Take action to amend the Cures Act
“I would absolutely wither if I had to sit in a nursing home for a year or two waiting for a heart transplant,” said Roy. “I was in a nursing home for two months after my pacemaker implant and I hated it.”
Thanks to home infusion, he doesn’t have to do that. He lives with his sister, Euthia, and often cooks for her and his daughter, Sarah, who lives nearby. He’s learning to make corned beef and cabbage for Sarah, but Asian dishes are his favorite to prepare. Because he has to avoid salt, he’s learned to be creative and add flavor with ginger, garlic, green onion and spices. “I make most of the meals and I enjoy it,” Roy said. “But my rule is if I cook, someone else has to do the dishes.”
“I would absolutely wither if I had to sit in a nursing home for a year or two waiting for a heart transplant.”