The young man achieves a rare milestone by living with a VAD for ten years
Among his Stanford Children’s Health doctors and nurses, Edgar Arredondo, 26, is known as a superhuman. This is because he has done something that no other young adult on the planet has done: he has lived for ten years with a ventricular assist device (VAD). It is a remarkable medical milestone, which he reached on March 11 this year.
“Edgar leads the position when it comes to living with a VAD. She is in unknown waters because she has had a longer VAD than any of our pediatric heart patients, ”says Jenna Murray, cardiac nurse, CPNP.
In children, VADs traditionally serve as a bridge for heart transplantation, allowing patients to leave the hospital and make their living until a donor is found. Edgar received his first VAD at age 15 and lived with a VAD so well that he decided to give up heart transplantation.
“I never thought I would get here and live so many years with a VAD. It’s easy and difficult at the same time, ”says Edgar.
Some VADs are also designed to provide “target therapy,” meaning they offer a permanent solution. One is the HeartMate 3, which Edgar has today.
“VADs are not a cure. When used long-term as a therapy, VADs require a lot of care, ”says John Dykes, MD, medical director of the VAD program at the Betty Irene Moore Children’s Heart Center.
VADs are caught where it leaves a failed heart, which pumps blood from the left ventricle and circulates it through the body. Cardiac surgeons place the implantable mechanical pump during open heart surgery. The pump is connected by lead wires to a control box that is carried out of the body.
“ADVs keep people with heart failure alive in the final stages, but they are not without risk. People living with VAD are often more susceptible to infections, stroke and pump malfunction, ”says Dr. Dykes.
A second celebration for five more years
In the past, Edgar celebrated five years at a VAD celebrating with his family and team of doctors and nurses in the courtyard of Lucile Packard Stanford Children’s Hospital, an exceptional milestone even then. As a child, Edgar developed Becker’s muscular dystrophy, which caused dilated cardiomyopathy, a weakness of the heart muscle. In 2010, Stanford Children’s Health’s heart surgery team placed a HeartMate II device on Edgar, something many children’s hospitals had not yet tried on in children, as almost all DAVs are designed for adults.
“I celebrated my 10th birthday at home with my parents and sisters, who got me a cake,” Edgar says. “I look forward to celebrating with my doctors and nurses after the dangers of COVID-19 pass.”
For someone with heart failure living with a VAD, a simple nosebleed can quickly fall into an emergency. It takes incredible dedication and constant attention to live with a VAD.
“Blood wants to clot and clotted blood can clog the pump, so we’re constantly balancing anticoagulant medications with anticoagulants to keep Edgar’s blood flowing freely,” Dr. Dykes says. “We’re here for Edgar, as long as he has any questions or concerns.”
In 2014, Edgar placed another HeartMate II to solve wiring problems that caused infections at the entry site. Then, in 2018, he underwent surgery to get the latest version, HeartMate 3. It maintains better blood flow, which leads to 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 was easier for me to use. It’s much smaller and more portable than the HeartMate II Says Edgar.
Meticulous care keeps Edgar healthy
Often, patients with VAD are in and out of the hospital frequently. Edgar has not had a hospital stay since 2018. Before, he visited about three times a year. Edgar’s ability to live with a VAD only improves over time.
“Edgar has a great instinct when something doesn’t feel right. I can’t count the number of times he has called us and we were able to catch something early and avoid a problem, ”says Dr. Dykes.
Edgar has a huge team of experts at heart who is behind him, ready to step in when he needs a small course correction to keep his care on track. Stanford’s child care team attributes Edgar’s success to his personal commitment and the impeccable care of his family.
“My mother is about to take my medicine and make sure the place of entry is clean. My doctors say I keep the cleanest place for any of her patients, thanks to my mother, “says Edgar.” I work hard to take care of myself. I eat healthy and avoid fast food because it makes my heart work harder. ” .
Recently, Edgar hired COVID-19, which caused a fright to his doctors. Because he is in such excellent health, he sailed without the need for supplemental oxygen or hospital support.
“I can honestly say that Edgar, at every step, has reduced the risk of having a heart pump as low as possible,” Murray says.
Edgar gets quarterly checks to do ultrasounds, lab tests and echocardiograms to monitor his heart function, but he is done. He credits the excellent education he initially received at the hospital as one of the reasons for his success.
“I know the Stanford team well and they know me. It’s like my extended family, ”says Edgar.
A rare success worldwide
Edgar is part of an elite club. Only 370 patients with HeartMate have lived with the device for more than 10 years. That’s 27,000 recipients worldwide.
Edgar takes this big hit calmly. His practical and simple approach to his medical condition allows him to always move forward, taking care of what lies ahead and without pausing to desire something different.
“Edgar’s perspective is what makes him superhuman. For most people, living with a VAD would mean a greater mental weight, “says Dr. Dykes.” It’s really remarkable his willingness to continue in peace, along with the incredible support of his family. ” .
As one of the most important pediatric cardiac centers in the country, Stanford Children’s Health places a large number of VADs in children each year and implanted its first pediatric VADs more than 20 years ago. Despite this experience, the Stanford Children’s Health heart team is afraid of Edgar to live with a VAD for 10 years.
“Edgar sets the bar for our patients with VAD and it is truly an inspiration. That’s why we called him our unofficial ambassador and asked him to talk to other patients about living with a VAD, ”says Murray.
Edgar makes his living, attending church, enjoying healthy meals with his family, drawing, playing video games and watching action movies, breaking records in silence.
“Am I superhuman for doing it for ten years? No, “says Edgar.” Maybe a little, but not much. “