Humbly but Persistently Working Toward a Superhuman Status

Young man reaches rare milestone by living with a VAD for 10 years

Among his doctors and nurses at Stanford Children’s Health, Edgar Arredondo, 26, is known as superhuman. That’s because he has done something possibly no other young adult on the planet has done: lived with a ventricular assist device (VAD) for 10 years. It’s a remarkable medical milestone, one he reached on March 11 of this year.

“Edgar is leading the charge when it comes to living with a VAD. He’s in uncharted waters because he has had a VAD longer than any of our pediatric heart patients,” says Jenna Murray, CPNP, cardiac nurse practitioner.

In children, VADs traditionally serve as a bridge to heart transplant, one that allows patients to leave the hospital and go about their lives until a donor is found. Edgar received his first VAD at age 15 and made living with a VAD work so well that he decided to forgo heart transplant.

“I never thought I’d get this far and live so many years with a VAD. It’s easy and hard at the same time,” says Edgar.

A few VADs are also designed to provide “destination therapy,” meaning they offer a permanent solution. One is the HeartMate 3, what Edgar has today.

“VADs are not a cure. When used on a long-term basis as a therapy, VADs require a lot of care,” says John Dykes, MD, medical director for the VAD program at Betty Irene Moore Children’s Heart Center.

VADs pick up where a failed heart leaves off, pumping blood from the left ventricle and circulating it through the body. Heart surgeons place the implantable mechanical pump during open-heart surgery. The pump is connected by lead wires to a controller box worn outside the body.  

“VADs keep people with end-stage heart failure alive, but they are not without risk. People living with VADs are often more susceptible to infections, strokes, and pump malfunctions,” Dr. Dykes says.

A second celebration for another five years

In the past, Edgar marked five years on a VAD by celebrating with his family and his team of doctors and nurses in the courtyard at Lucile Packard Children’s Hospital Stanford—an exceptional milestone even then. As a child, Edgar developed Becker muscular dystrophy, which led to dilated cardiomyopathy, a weakness of the heart muscle. In 2010, the heart surgery team at Stanford Children’s Health placed a HeartMate II device in Edgar, something that many children’s hospitals hadn’t attempted yet in kids because almost all VADs are designed for adults.

“I celebrated my 10-year anniversary at home with my parents and sisters, who got me a cake,” Edgar says. “I hope to celebrate with my doctors and nurses after the dangers of COVID-19 pass.”

For someone with heart failure who is living with a VAD, a simple nosebleed can quickly cascade into an emergency. It takes an incredible amount of dedication and constant attention to live with a VAD.

“Blood wants to clot, and clotted blood can clog the pump, so we are constantly balancing anticoagulation medicines with blood thinners to keep Edgar’s blood flowing freely,” Dr. Dykes says. “We’re here for Edgar, whenever he has a question or concern.”

In 2014, Edgar had another HeartMate II placed to resolve wiring issues that were causing infections at the entrance site. Then, in 2018, he had surgery to get the newest version, HeartMate 3. It maintains better blood flow, which results in fewer complications.

“It was a big decision to go ahead with another heart surgery to get a third VAD, but I’m glad I did it. It has been easier for me to use. It’s much smaller and more portable than the HeartMate II,” Edgar says. 

Meticulous care keeps Edgar healthy

Often, VAD patients are in and out of the hospital frequently. Edgar hasn’t had a hospital stay since 2018. Before then, he visited about three times a year. Edgar’s ability to live with a VAD just gets better with time.

“Edgar has a great instinct for when something doesn’t feel right. I can’t count the number of times he has called us and we’ve been able to catch something early and avoid an issue,” Dr. Dykes says.  

Edgar has an enormous team of heart experts standing behind him, ready to step in when he needs a small course correction to keep his care on track. The Stanford Children’s Health care team credits Edgar’s success to his personal commitment and his family’s impeccable care.

“My mom, she’s on me to take my medications and to make sure my entrance site is clean. My doctors say I keep the site the cleanest of any of their patients, thanks to my mom,” Edgar says. “I work hard to take care of myself. I eat healthy and avoid fast food because it makes the heart work harder.”

Recently, Edgar contracted COVID-19, giving his doctors a scare. Because he is in such excellent health, he sailed through without any need for supplemental oxygen or hospital support.

“I can honestly say that Edgar, at every turn, has lowered the risk of having a heart pump to as low as it can go,” Murray says.

Edgar gets quarterly checkups to have ultrasounds, lab tests, and echocardiograms to monitor his heart’s function, but that’s it. He credits the excellent education he received early on while in the hospital as one reason for his success.

“I know the Stanford team well and they know me. It’s like they are my extended family,” Edgar says.

A rare accomplishment, worldwide

Edgar is in an elite club. Only 370 HeartMate patients have lived with the device for over 10 years. That’s out of 27,000 recipients, worldwide. 

Edgar takes this big accomplishment in stride. His unassuming, practical approach to his medical condition allows him to always move forward, taking care of what’s right in front of him and not pausing to wish for something different.

“Edgar’s outlook is what makes him superhuman. For most people, living with a VAD would take a bigger mental toll,” Dr. Dykes says. “His willingness to calmly keep going no matter what, along with his family’s incredible support, is really remarkable.”  

As one of the top pediatric heart centers in the country, Stanford Children’s Health places a large number of VADs in children each year and implanted its first pediatric VAD more than 20 years ago. Despite this expertise, the heart team at Stanford Children’s Health is in awe of Edgar for living with a VAD for 10 years. 

“Edgar sets the bar for our VAD patients, and he’s truly an inspiration. That’s why we named him our unofficial ambassador and asked him to talk with other patients about living with a VAD,” Murray says.  

Edgar goes about his life—attending church, enjoying healthy meals with his family, drawing, playing video games, and watching action movies—quietly breaking records.

“Am I superhuman for making it 10 years? No,” says Edgar. “Maybe a little, but not much.”

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