There were no presents under the tree last Christmas, but Jeff Riordan’s teenage sons didn’t mind. That their dad was alive and home was the best gift of all.
Spending 15 days in the hospital after he was diagnosed with advanced heart failure, Jeff was able to go home thanks to around-the-clock infusion of inotropic medication, which helps his heart beat more effectively. A month earlier, he couldn’t have imagined that he would be so thankful to be tethered to the lifesaving medication.
Having been healthy and fit his whole life, Jeff, 46, shrugged off the suspicion that something was wrong in early December 2016 when he couldn’t walk across a parking lot without stopping to catch his breath. After five days of similar symptoms, the traveling biotech sales manager flew home to Spokane, Wash. and drove himself to the emergency room where his wife, Kim, met him.
After a series of tests, he got the news. “You know it’s bad when the cardiologist has tears in her eyes,” he remembers. “She said ‘I’m sorry, you have stage four heart failure.’” If he’d waited a few more days, he might have died of sudden cardiac arrest or a heart attack.
He was diagnosed with non-ischemic cardiomyopathy, caused, doctors believe, by a virus that damaged his heart during a bout with the flu the previous month, a rare complication. His ejection fraction (EF) – a measurement of how well the heart is pumping blood – was 11 percent. A normal EF is 55 percent or more. Because his heart wasn’t pumping as it should, fluid built up in his body and his kidneys began failing.
Originally, he was told he would need a heart transplant and should be given a left ventricular assist device (LVAD) to help his heart work while he waited. But because Jeff’s heart had not been scarred, his doctor believed it could regain more function and started him on inotropic infusion, “rocket fuel for the heart,” Jeff says.
As a salesman of a commonly infused medication, Jeff is familiar with a new law called the 21st Century Cures Act that is creating a gap in care and preventing some people on Medicare from receiving home infusion of inotropic medication. He knows he is fortunate his private insurance covers home infusion.Take action to amend the Cures Act
“I can’t imagine not having the nursing coverage and not being able to get home infusion,” said Jeff. “My doctor has patients who need inotropic infusion and can’t be discharged home because of the Cures Act.”
On Dec. 23, he went home, where the infusion nurse met him and spent time showing him and Kim how to manage the medication, pump and peripherally inserted central catheter (PICC line) in his upper arm. “It was snowing and 10 degrees outside, and the nurse sat at my kitchen table and told me my heart was strong,” said Jeff. “Her warmth, knowledge and patience gave me confidence and strength when I needed it most.”
Jeff keeps the pump and bag of medication tucked in the pocket of a vest. He gets his medication delivered to the house weekly, and every Friday a nurse changes the dressing for his PICC line and provides an assessment of Jeff’s health to his doctor.
The medication is doing the job. His kidneys are working again. His EF is now 25 percent, and doctors believe eventually he can achieve 40 percent or more. He is slowly receiving less and less inotropic medication and hopes to be off it entirely by June.
Before he developed heart failure, Jeff coached his sons’ baseball teams. He enjoyed family hikes. He and his family regularly took their boat to nearby lakes to waterski and tube. He loved downhill skiing and he ran on the treadmill for 40 minutes three to four days a week.
While he won’t regain full heart function, doctors say he should be able to get back to all of the activities he enjoys. After being discharged from the hospital, one of his first outings with his sons was to the batting cage. He’s now walking 20 minutes two or three times a week and plans to be back on his regular treadmill schedule by the end of summer.
For the rest of his life Jeff will have to watch his salt and fluid intake and follow a heart-healthy diet. He’s happy to make the accommodations. And he’s thankful he is able to enjoy his life and family while receiving treatment.
“Without home infusion coverage, I would not be with my family,” he said. “I would still be in a nursing facility and I would lose my job. It’s as simple as that.”
“I can’t imagine not having the nursing coverage and not being able to get home infusion… My doctor has patients who need inotropic infusion and can’t be discharged home because of the Cures Act.”