ALLENDALE, Mich. — An Allendale father of two is sharing his experience with a rare genetic mutation after a frightening episode during a run led to an unexpected heart diagnosis.
WATCH: Allendale father shares life-changing diagnosis of rare PLN gene mutation
Jordan Resseguie, who was born and raised in Holland, has been a lifelong runner and works as a nurse anesthetist at Trinity Health in Grand Rapids. He turned 40 this year.
"I've kind of made it a quest to just be the healthiest I can be. And I felt like I was in the best shape of my life, I was as fit as I've ever been," Resseguie said.
That changed during an afternoon run in July.
"Out of the blue, my heart just started pounding in my chest. Got super dizzy and lightheaded, and had to lay down," Resseguie said. "I wasn't able to stand up and walk to go get help because I would get too dizzy."
The episode eventually passed, but Resseguie followed up with his cardiologist and was given a Holter monitor to track his heart rhythm for two weeks.
While wearing the monitor, it happened again.
"My heart was just pounding, and I lost my vision and collapsed," Resseguie said.
Data captured by the monitor showed Resseguie had gone into ventricular tachycardia, a potentially dangerous rapid heart rhythm.
He spent the next week at Corewell Health, where doctors implanted a cardioverter defibrillator, or ICD, in his chest.
"If the arrhythmia would happen again, it would shock me wherever I'm at," Resseguie said. "So I have my safety net buddy with me."
He said he expects to have the device for the rest of his life.
PRIOR COVERAGE: Rare heart gene mutation may be hiding in West Michigan's Dutch community
Genetic testing provides an answer
A few weeks after leaving the hospital, Resseguie underwent genetic testing. The results identified a mutation in his phospholamban, or PLN, gene called a PLN R14 deletion.
The diagnosis connected his health scare to a condition researchers have been working to raise awareness about in West Michigan, particularly among people with Dutch ancestry.
The mutation is believed to have originated in the Netherlands hundreds of years ago. Previous reporting on the condition found researchers believe West Michigan could have a significant number of unidentified carriers because of the region's large Dutch-American population.
The mutation can lead to cardiomyopathy, dangerous heart rhythms, heart failure and sudden cardiac death. Some people who carry it may have few or no warning signs before developing serious heart problems.
Resseguie's Dutch ancestry comes from his mother's side of the family.
"My grandpa on my mom's side, his parents came from the Netherlands," he said.
A diagnosis that changed more than running
The diagnosis meant significant changes for a man who had built much of his life around being active.
"Initially, it was devastating because I really found out at first that, you know, the likelihood of me being able to continue my lifestyle is pretty well done, so the days of any kind of vigorous exercise were over," Resseguie said.
But losing the ability to run is not what weighs on him most.
"You also kind of think longer term about, you know, the likelihood that I'll probably lose some years off the end of my life, and that means missing out on time with my family and watching the kids grow up," Resseguie said. "And, you know, that stuff is a little bit more important than if I'll be able to run or ride my bike again."
The diagnosis also has implications for his twin daughters. Resseguie said he is a carrier of the mutation and worries about what it could mean for their futures.
His wife, Jodi, has helped the family adjust to their new reality.
"She's been incredible," Resseguie said. "She for sure carries us. She's such a positive person. I know it's probably near impossible, but she does it. She's the strong one for the family."
Turning his diagnosis into awareness
Resseguie has since connected with the PLN Foundation, where he has found people facing similar experiences and learned more about research into the condition.
"There's some really promising research in clinical trials that are just starting, which I think is really pulling me along right now," he said. "But it's still a very early stage."
Resseguie plans to attend a community awareness event hosted by the foundation from 6 to 9 p.m. Wednesday, Nov. 18, at Hyatt Place in Grand Rapids. He said people from the foundation in the Netherlands are expected to attend, along with others connected to the condition.
He hopes the event helps other families learn about PLN and genetic testing, particularly those who have unexplained heart problems in their family histories.
"There's a lot of anxiety that goes with it, but also, the thing that keeps people going is hope, and that's kind of why I'm here," Resseguie said. "I just want to get more, more people to participate so we can study this thing and beat it."
Resseguie plans to seek another medical opinion at Johns Hopkins in November as he continues learning what the diagnosis will mean for his lifestyle and long-term care.
He also encourages people with an unusual family history of heart problems to speak with their primary care provider or a cardiologist about whether further evaluation could be appropriate.
For Resseguie, the months since his collapse have been filled with uncertainty, but they have also changed the way he views the time he has with his family.
"I live each day now with like a whole another level of gratitude," Resseguie said. "I'm still just so thankful to still be here, and, you know, you get a second shot at stuff."
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