URBANA — For Rachel Rogers, there are up to 16 hours a day to be away from an electrical outlet.
And swimming is out of the question.
But those are trade-offs this 46-year-old Rantoul mother of six makes to remain alive with a failed heart and a mechanical pump — called a left ventricular assist device, or LVAD — she got two years ago to keep her blood flowing.
Heart failure had crept up on her gradually in the years after she was diagnosed with a weakened heart condition called postpartum cardiomyopathy. It left her feeling increasingly fatigued, short of breath and finally unable to work, Rogers recalls.
Since she underwent surgery to get an LVAD in 2012, she's started her own catering business.
"I feel 100 percent better than before I had it," she said.
An LVAD works by helping the left ventricle — one of the heart's four chambers — pump blood to the aorta, the main artery carrying blood from the heart to the rest of the body.
It includes a mechanical pump that is implanted in the chest and an external power source and controller (that can't get wet) connected to the pump by a cable.
A patient with an LVAD can't be disconnected from the controller and power source. But Rogers said she has up to 16 hours of battery power to be out and around during the daytime, and tends to plug in to a power source overnight or while she's riding in a car.
Originally offered as a "bridge to transplant" for patients waiting on a donated heart, this technology is now used on a longer-term basis as "destination therapy" for patients who aren't heart transplant candidates, Rogers' Carle cardiologist, Dr. Andrea Brasch, said.
Heart failure is a progressive disease in which the heart can't pump enough blood, and LVADs are largely for people with end-stage heart failure who haven't been helped by other treatments, such as medications, surgeries to improve heart function, a pacemaker and lifestyle changes to reduce weight, treat diabetes and high blood pressure, Brasch said.
Not all patients are good candidates for an LVAD, because not everyone can live with it, she said.
"Number one, you have to have a reasonable life expectancy," she said.
Other criteria: Patients can't have other serious diseases, unhealthy habits or be depressed. And they must be of clear mind to fully understand and comply with the complications of living with this device, Brasch said.
Plus, patients must have good social support, because they're going to need help.
"They have to live with somebody. This pump is complicated and there can be mechanical failure," Brasch said.
With heart failure on the rise in the U.S., Brasch said the number of people needing help from LVADs is destined to grow.
"Heart failure is really an epidemic, and more and more patients will be diagnosed with it," she said.
LVAD surgery isn't done in the local area. Rogers and other local LVAD patients have been making several-hour drives for routine exams and much of their follow-up care, typically to the medical centers where they got the devices, Brasch said.
But Carle is about to offer a much closer option for follow-up LVAD care, with its Advanced Heart Failure and Assist Device Clinic set to open in the next 2-3 weeks at its Heart and Vascular Institute.
The clinic will be operated under shared-care agreements with Barnes-Jewish Hospital, St. Louis, and Advocate Christ Medical Center, Oak Lawn.
Rogers has been making regular trips to Barnes-Jewish Hospital, often with her mother.
But her next appointment in July will involve a 20-minute drive to Urbana.
It's taken about a year-and-a-half to get the preparations for the local LVAD assistance clinic in place, Brasch said. A new surgeon joining Carle in July will eventually be offering LVAD implantation surgery, she said, but that is at least another year away.
Meanwhile, Brasch said the new clinic is available to serve 11 patients Carle has referred out of the area, most of whom underwent implantation surgery at Barnes-Jewish Hospital. And Carle plans to do outreach to let other medical providers in the region know this clinic is available.
"We recognize that there is a big need for this," Brasch said. "We need it as a center here, to take care of these patients."
Heart failure numbers to know
5.1 million: People with heart failure in the U.S.
50 percent: Those diagnosed who die within 5 years.
600,000: New cases diagnosed in the U.S. per year.
3,000: Those in the U.S. waiting for a heart transplant on any given day.
2,200: Annual heart transplant surgeries done in the U.S.