The Traveling Sisterhood of the HeartMate LVAD

There's a tendency to talk about heart failure in terms of what you lose. It's one of the reasons finding support for heart failure can be a difficult process.

Not so for Mayra Rodriguez and Laura Huber. In living with heart failure for more than 15 years each, they always come back to what they’ve gained.

Sisterhood.

Both have a HeartMate II Left Ventricular Assist Device (LVAD), a heart pump that helps the left ventricle of the heart do its all-important job of sending blood to every part of the body with each beat. It is the predecessor of the HeartMate 3 LVAD, which initially was FDA-approved in 2017.

Though they live 1,500 miles apart, they affectionately call themselves "The LVAD Sisters," a nickname they adopted after meeting during the 2015 Heart Failure Society of America Annual Scientific Meeting near Washington, D.C.

How did they manage to form a bond so strong, so special, so quickly?

Well, both Rodriguez and Huber know what it's like to be told you only have hours to live — and yet, more than a decade and a half later, wake up each day ready for whatever life brings.

"It just clicked as soon as we met each other," Huber said. "It's almost like we already knew each other. Mayra definitely felt like a true heart sister, a heart warrior."

In May, both will celebrate another milestone year: Huber will mark 16 years since her HeartMate II was implanted, and it will be 15 years for Rodriguez. 

'This Device is Really Making a Difference'

Heart failure can change everything.

In 2007, Huber, of Aberdeen, S.D., went from the high of giving birth to her daughter, Maddie, to the low of going to the hospital a week later. She developed symptoms of heart failure almost immediately after the delivery. Within a month, she was in dire need of help.

About a year after that, over in Union, N.J., Rodriguez's own journey began.

Chemotherapy to combat non-Hodgkin's lymphoma had damaged her heart, heightening the risk when she later became pregnant. Her delivery turned out fine, and so did her baby boy, Gabriel, but Rodriguez would not come away unscathed.

"A month later, I got bigger and bigger, retaining liquid," she said, "and that's when they found out that my heart was really, really bad." She was diagnosed with cardiomyopathy, a disease of the heart muscle, and her lungs were deteriorating rapidly.

The HeartMate II gave both women a new lease on life.

For Rodriguez, life with her LVAD means staying active and "being able to get up and go." At 43, she is the longest-living person in New Jersey on an LVAD device.

For Huber, now 42, it means going to work every day as a physical therapist in cardiac rehab at a local hospital in Aberdeen and sharing her experiences with patients who have been referred for an LVAD. It also means that one of the scariest moments of her life is now a very distant memory.

"The morning of my surgery, the team came in and said, 'We need to go now, or I'm only giving you about two more days to live," she recalled.

"Then, I remember waking up that night after surgery, and the first time I looked in the mirror. Seeing the color back in my face was when it hit me: I was really sick, and this device is really making a difference."

Drawing a Bigger Circle

Between getting her HeartMate in 2008 and meeting Huber and others in 2015, Rodriguez had never seen another LVAD recipient. That kind of isolating experience is just one of the many challenges of finding support for heart failure patients.

"Meeting Laura and her husband and Maddie, it was like, 'Oh, dear God, we are not alone in this world,' " Rodriguez said.

And maybe not everyone will end up hitting it off like Rodriguez and Huber did, traveling with their families to Disney World a year after they met. But both said they hope to meet and encourage more people who are going through what they did.

To expand a sisterhood into a circle of survivors.

"I met two brothers right here in New Jersey, in the next town, and they knew about me," Rodriguez said. "And they were like, 'You are the one!' "

One of the brothers showed Rodriguez the discreet bag that carries an external battery pack for the LVAD. Rodriguez remembered breaking into a smile. She has a bag, too.

"Those hugs, you feel in your heart. And I just told him, welcome to the family," she said.

"A week later, his brother got an LVAD, too — they were twins. And they said, 'Now we're a family of three!' "

Visit DoMoreForHeartFailure.com to learn more about heart failure and, if you are living with heart failure, how you can talk to someone like you.

These materials are not intended to replace your doctor's advice or information. For any questions or concerns you may have regarding the medical procedures, devices and/or your personal health, please discuss these with your physician.

This testimonial relays an account of an individual's response to the treatment. This patient's account is genuine, typical, and documented. However, it does not provide any indication, guide, warranty or guarantee as to the response other persons may have to the treatment. Responses to the treatment discussed can and do vary and are specific to the individual patient.