Patient Care

Syracuse-area Woman with Heart Failure Reaches Rare Milestone

Mar. 20, 2019
UR Medicine Heart & Vascular joins her celebration of living with heart pump
A Central New York woman is 1 of just 100 people in the nation alive today thanks to a decade of support from a heart pump. And those 10 years were tremendously valuable to Rahel Elmer-Reger, who raised her daughters, now 15 and 12, and she’s not nearly done.
Elmer-Reger, 46, lives with a HeartMate II left ventricular assist device (LVAD) pumping her heart. It saved her life when it was implanted in February of 2009.
That move by the cardiac surgeons at UR Medicine’s Strong Memorial Hospital allowed her to see birthday celebrations, school concerts and plays, and take vacations to see family in Switzerland. Those seemingly routine moments mean so much to Elmer-Reger, who has beaten the odds, though longevity on the devices is still being tallied.
“I’m so grateful to have this LVAD. My kids wouldn’t remember me at this point if I’d died during that surgery,” said Elmer-Reger of Cazenovia. She suffered an unexpected complication during a valve replacement procedure and the pump was needed to save her life. “I’m really grateful that I was in a place where my doctors used LVADs.”
Since the HeartMate II became available in 2001, more than 26,000 people in the U.S. have received them. It is a rare group of people, only 0.003 percent, that has lived this long with the device in their chest. Among that group, one person is in their 14th year and eight are in their 12th years, according to device-maker Abbott.
“She has shown tremendous strength and determination to overcome a serious health crisis. Her sheer will to live, to be there for her kids, has driven her for so long,” said Leway Chen, M.D., M.P.H., her heart failure cardiologist. “She’s able to work and raise her family and live well all these years. It inspires us.”
Heart failure cardiologist Jeffrey Alexis, M.D., is excited about Elmer-Reger’s milestone because it beats the odds that were originally set when LVADs were first available.
“Reaching 10 years on the device is really something to celebrate. These LVADs were originally designed to provide short-term support for people who were in dire need of heart transplantation,” he said. “Through years of study and use, we’ve learned these pumps can help people to live a long time. And in moments like this, we have to marvel at the power of this technology in saving lives.”
A lifetime of heart trouble
Elmer-Reger, who lived many years in Clinton, Oneida County, was diagnosed with mitral valve regurgitation as a child and cardiologist Raymond Carlson, M.D., provided annual monitoring. When she reached her mid-30s, her aortic valve, which helps push oxygen-rich blood through the body, was failing and Carlson recommended valve replacement.   
During valve replacement surgery, her heart failed to restart. UR Medicine doctors determined ventricular assist devices were needed to support both sides of her heart. 
“After three weeks, they were able to remove the (pump on the right side), and I’ve been living with the LVAD ever since,” said Elmer-Reger, who is a writing coach at Hamilton College.
At that point, the team considered whether a heart transplant would be possible however, testing showed she has a rare antibody that would make rejection a likely problem, meaning her body would fight the new heart. 
“Back then, staying alive was a battle for me. I wasn’t sure I could survive a heart transplant and the battle to live after that,” said Elmer-Reger, who decided to keep the LVAD. “My life is a bit more of a tightrope walk than it is for others. I realize it and try to enjoy every day.”
She’s making the most of it. Elmer-Reger has taken her children to Switzerland, where she grew up, to visit her family several times. “I love the mountains and I love seeing the cows and hearing their bells,” she said. And while she lived many years near Utica, at the foot of the Adirondack Park where she’s enjoyed many peaceful vacations, she said New York’s mountains “don’t even compare” to those in her homeland. 
Leader in Heart Failure Care
LVADs were originally designed to serve patients who needed extra support, and time, while waiting for a heart transplant. The HeartMate II LVAD can pump up to 10 liters of blood per minute, covering the full output of a healthy heart. The device is designed to provide long-term cardiac support for patients who have advanced heart failure.
Doctors can now also use them as permanent therapy when a patient opts out or is ineligible to receive a heart transplant. This advance was a result, in part, of clinical studies led by the UR Medicine’s Heart and Vascular team.
Strong’s heart failure team was first to introduce LVADs to Upstate New York in 2001 and over the past 18 years, patients have received every generation of the devices. Last year, the heart failure team implanted 88 devices and surgeons introduced a less invasive implant technique providing patients an easier recovery.

The team’s size and experience attracts people from Northern New York, Albany, Buffalo and the Southern Tier and Pennsylvania who travel to Rochester for the specialized care. Strong Memorial Hospital is among the top 10 centers in the country for volume. Last year the team implanted its 600th pump.