Undiagnosed: How a clinical trial screening revealed a patient’s heart condition

There are many reasons to participate in clinical trials, from gaining access to new treatments to advancing care for future generations.

Another reason? Getting screened for a study might just uncover a condition you never knew you had.

That was the case for Jon Chandler. While undergoing screening for a clinical trial offered through the MultiCare Institute for Research and Innovation, he discovered he had atrial fibrillation, an irregular heartbeat that, left untreated, can cause life-threatening complications.

“If it hadn’t been for the trial, I might never have known that I had atrial fibrillation until it caused a stroke or a heart attack,” Chandler says.

The power of clinical trials

Chandler describes his partner of more than 20 years, Eric Thompson, as “the kind of person who acts like they know everything — because they actually do.” Chandler credits his partner for finding the clinical trial where his atrial fibrillation was discovered.

Thompson keeps an eye out for phase 3 clinical trials that he and Chandler, who lives with heart failure, may qualify for and benefit from. Clinical trials have different phases, and each one has a specific purpose. Phase 3 trials test how safe and effective a new treatment is compared to the current standard treatment.

“I’m a big believer in the power of seeking clinical trials when the standard of care isn’t getting you where you want to be,” Thompson says. “Plus, everybody benefits from clinical trials, so it’s a way to give back.”

When Thompson came across a phase 3 trial at the MultiCare Institute for Research and Innovation that was evaluating a drug called Tirzepatide, he thought it might be a good fit for Chandler.

“Tirzepatide is a medication used in the treatment of diabetes, and it has the added benefit of helping with weight loss,” says Ahmad Slim, MD, principal investigator of the trial.

Dr. Slim, who is also a cardiologist and regional chief medical officer with MultiCare’s Pulse Heart Institute, continues, “The clinical trial is testing how well Tirzepatide improves heart failure symptoms and outcomes for people with a certain type of heart failure as well as obesity.”

It was the weight loss benefit of Tirzepatide that first caught Thompson’s attention. He and Chandler are avid travelers, and lately Chandler had trouble keeping up during their adventures.

“We spent the winter of 2020-21 in Mexico, and Jon was frequently having to stop and rest when we went for walks,” Thompson says. “For the first time, he also needed a wheelchair in the airport. I chalked it up to inactivity and weight gain during the pandemic and thought this trial could help him lose weight and start feeling better.”

A surprise result

Every patient who participates in a clinical trial undergoes a screening visit with the trial team to ensure they qualify from a medical perspective. As part of this process, Chandler received an electrocardiogram (EKG), which measures the electrical signals in the heart. The results of this test were not what he nor Thompson expected.

“When Dr. Slim told me I was in atrial fibrillation, it was a shock,” Chandler says. “And while the diagnosis meant that I couldn’t participate in the study at that time, Dr. Slim took me on as a patient. I like to joke that this might be the fastest way to get a cardiologist.”

Atrial fibrillation is an irregular heart rhythm that begins in the top chamber of the heart. Many people with this condition experience palpitations, a rapid or pounding heartbeat or fluttering sensation in the chest. But some people, like Chandler, don’t experience those symptoms, and so the condition may go undetected until it causes a serious or fatal health event.

“In Jon’s case, atrial fibrillation was actually driving his heart failure, which likely led to some of the fatigue and shortness of breath he’d been experiencing,” Dr. Slim says. “The main concern with atrial fibrillation is the increased risk of stroke. The erratic rhythm causes blood to pool in the heart, forming clots that can then travel to the brain.”

The road back to a normal rhythm

Together, Chandler and Dr. Slim began a course of treatment that included medications and three electrical cardioversions, a procedure where the heart is painlessly shocked back into normal rhythm while a patient is under sedation. Chandler initially felt better after these procedures, but ultimately the atrial fibrillation returned.

“You could tell by looking at his face when he was in normal rhythm versus when he was out — his skin was pinker and he just looked more alive,” Thompson says. “The difference in the amount of aerobic activity he was able to do was also stark.”

In the fall of 2022, Chandler underwent a procedure known as a cardiac ablation with the hope that it would provide more long-lasting relief. This same-day procedure creates a small amount of scar tissue around the area of the heart where irregular heartbeats begin. By isolating the source of the irregular beat, normal rhythm is restored.

“Dr. Slim, and really everybody we have dealt with in the cardiac procedures unit at Tacoma General, has just been fantastic,” Chandler says. “They’ve been super nice and respectful of our time. They also put us at ease, understanding that something that was routine for them was frightening and new for us.”

Now Chandler is feeling more energetic, and once his condition is fully stabilized, he plans to re-screen for the Tirzepatide clinical trial. Until then, he and Thompson are back to their usual travels, currently roaming the Pacific Ocean on a cruise.

“These days, the only thing that makes Jon’s heart skip a beat is me,” Thompson says.