When George (Jorge) Carrillo, MSN, RN was diagnosed with Loeys-Dietz syndrome in August 2024, he wasn’t sure how to feel.
“I was at work, and I got the call from the nurse practitioner at the surgeon’s office to say, you know…we got the results, and…you do have Loeys-Dietz,” he recalled.
George, at just 45 years old, had several diagnoses, catching the attention of his physician. During the appointment, George could tell providers were suspicious that larger medical issues were in play.
“He was a little curious and asked to see my fingers. Which was very strange,” George said. “No doctor had ever asked to see my fingers…and he was like, ‘has anyone ever told you that you have very long slender fingers that curl up’?”
This moment was a turning point – as those finger-related features can be hallmarks of Loeys-Dietz syndrome. George’s doctor recommended genetic testing, which not only confirmed LDS but also uncovered an aortic root aneurysm.
Still on the phone, George was hit with a shocking reality along with his diagnosis: he needed open-heart surgery.
Taking Control of the Unknown
With over 15 years of nursing experience, George was no stranger to the medical world. He had spent years caring for patients, guiding them through procedures, and preparing them for what lay ahead. But this time, he would be the one facing surgery.
“Being a healthcare professional, I kind of know what I want and what I don’t want,” he said. “I did a lot of reading about open heart surgery and kind of the things that could happen mentally with patients.”
Undergoing surgery at the same hospital where he worked gave him an advantage: He knew the system, the people, and the process. But it also meant he understood the risks more than most. Visiting the departments that would be part of his care gave him a rare, behind-the-scenes look at his own future treatment.
“I went to the departments that I knew I was going to be involved in,” he said. “I went to the ICU…talked to the nurses that I knew there. I told them to not hold back, like tell me exactly, and they shared everything that was going to happen.”
Colleagues gave him an hour-by-hour breakdown of the surgical process, something few patients ever experience. That level of detail didn’t just prepare him physically, it gave him a sense of control over a situation where so much felt uncertain.
“I just felt more prepared, like, I knew what was going to happen at every moment,” he said. Even with all his medical knowledge, stepping into the patient’s role was unfamiliar territory. The decisions ahead felt heavy, but he knew what he needed to do.
“The biggest thing I did is have conversations with, number one, my family and most importantly with my husband,” he said. “[My husband] would be there to make decisions for me if something would go terribly wrong. The most important thing we did was to complete my advanced directive, to say what it is that I would want if I was unable to make medical decisions.”
George knew the conversation, while emotionally difficult, was essential. His heart would be stopped for hours during surgery, with a bypass machine taking over its function. Planning wasn’t just about preparation; it was about ensuring his voice would be heard, no matter what happened next.
After all of George’s advance preparation, in what seemed like no time at all, it was surgery day.
The Road to Recovery
George’s surgery went smoothly, and his recovery was, in his words, “quite good!”
“I was out of the hospital, and I only spent three nights…then I was home,” said George. I think I was mentally prepared.” George’s surgery was on Tuesday, and he was home by Friday afternoon.
He described how much care and support his medical team had for him. With no major complications, he was able to get home and recover comfortably.
“By Friday morning, I had all the tubes removed and everything. And yeah, I was home by lunch — I remember because my husband made me soup,” George said. But not everything was smooth sailing. Recovery meant making compromises and accepting help.
“I mean, it hurt,” he said. “Giving up a little independence to my husband to do some of my activities of daily living…Needing some help with showering and things of that nature. You’re just like, okay, I prepared my husband in advance.”
One of the biggest comforts during his recovery? His chocolate lab. “It was so nice to kind of have pet therapy,” he said.
From Patient to Advocate
Now, in February 2025, George is finding new ways to engage with a community he has only recently joined.
“How can I help others?” he recalls asking himself. “Let’s share how we can help others in navigating this process… I’ve been looking forward to doing more with the Foundation but in a capacity that’s about advocating.”
He hasn’t wasted any time getting involved. George has already signed up for the 2025 D.C. Walk for Victory on May 3 and is supporting the Foundation’s 2025 Atlanta Conference, set for July 10-13.
“Pretty excited to just be in support…especially when you’re in the healthcare field, you kind of have a different perspective, and I can’t just sit back… that’s why I decided to get involved.”
To learn more about Loeys-Dietz syndrome, visit loeysdietz.org
For media inquiries, contact Chris at brandcomms@marfan.org
Christopher T. "Chris" Theriot is the Integrated Marketing Communications Manager for the Marfan Foundation and its divisions. Reach Chris at brandcomms@marfan.org