'Something I never saw coming': Canadian powerlifter spent 5 weeks on life support after developing rare life-threatening illness
Jared Maynard opens up about fighting for his life after what he believed to be the flu turned out to be a rare immune system disease.
This article is for informational purposes only and is not a substitute for professional medical advice, diagnosis or treatment. Contact a qualified medical professional before engaging in any physical activity, or making any changes to your diet, medication or lifestyle.
Jared Maynard initially thought he was coming down with a typical cold when he began feeling ill in January 2023. His wife and daughters were also feeling sick, but as the rest of his family recovered, the 33-year-old powerlifter’s condition worsened.
In addition to cold and flu symptoms, the father-of-three told Yahoo Canada he began experiencing insomnia. “I wasn’t able to sleep for more than an hour or so at a time,” the Wallenstein, Ont.—based physical therapist said.
When his lymph nodes began to swell, he visited a local hospital where he was told he had mononucleosis, a viral infection. However his symptoms continued to escalate and it became undeniable that Maynard needed to return to the hospital.
“Things were still getting worse — fever and chills that would swing pretty wildly as well as the other symptoms. And then three or four days later, my wife looked at me and said, ‘You're yellow,’ because my skin had started to jaundice. And that's when we knew we needed to go to a larger hospital and just figure things out. Things were not good," he recalled.
Fighting for survival
Maynard was admitted to the emergency room immediately. “My heart rate was really high, around 160-170, just from standing and sitting,” he said. Within six days, he was on life support, suffering from organ failure; his liver and kidneys were failing, and his spleen were enlarged.
Maynard was diagnosed with Hemophagocytic Lymphohistiocytosis (HLH), a rare and potentially life-threatening immune deficiency disorder that causes certain white blood cells to attack other blood cells.
"When we are exposed to a virus or bacteria, our body has a normal response to clear the pathogen," Dr. Luke Chen, a clinical hematologist and Professor of Medicine at Dalhousie University told Yahoo Canada. "However, in HLH, the immune response is excessive and can damage the organs or even lead to death."
According to Chen, there is progress being made in understanding what triggers HLH. There are subtle genetic factors that may predispose adults to the condition, which is most common in infants and children.
"If you're experiencing very high fevers, severe fatigue, jaundice, or excessive bleeding, these could be indicators of HLH, and you should seek medical attention immediately," Chen said.
Maynard's wife and parents were told how serious and rare his condition was, and they faced the terrifying possibility of losing him.
“The medical team shared that the protocol for treatment is typically chemotherapy, corticosteroids, monoclonal antibodies, and a couple of other things. But with how sick I was and how fast I was declining, especially once I was put on life support, I couldn't receive the proper or the full doses of the chemo. They really had to try to make the protocol work, and they couldn't give me what they wanted to because I just wasn't strong enough to handle it,” he detailed.
A positive turning point
Despite his prognosis, Maynard started to show signs of recovery. “At a certain point, after that last treatment option where my hematologist said, 'He's going to do what he's going to do,' there was a lot of prayer being offered...," he said. "I began to make a recovery, which was dramatic enough to earn me the nickname ‘miracle man’ by some of the staff."
After five weeks on life support, he regained consciousness, but his battle was far from over. The months on life support had caused his larynx and throat to atrophy. Maynard began working with speech-language pathologist to learn how to swallow safely.
“It wasn't safe for me to eat or drink anything because they could aspirate, where some of the food or liquid could go into my lungs, create pneumonia, and cause an infection,” he noted.
Maynard lost significant weight during his hospital stay, dropping from 193 pounds to around 150. “One of the things that allowed me to make it through that awful time was how fit I was going into it,” he said. “A lot of the muscle that I'd built over years in the gym ended up being that fuel source.”
Physical therapy was gruelling. Maynard, who was once lifting heavy weights as a powerlifter, found himself too weak to hold his phone or move.
“I remember being so weak that I couldn't push myself up out of bed on my own. They had to use a lift to move me from the bed to a chair. And so there was a lot of physical therapy, which was on one hand made a little easier because I'm a physical therapist by trade and training," he recalled. "I understood what the process was."
A new lease on life
Maynard's journey has given him a profound appreciation for life and health. “We truly don't know how much time we have," he said. “This is something that I never saw coming."
Although HLH can be genetic, Maynard says his hematologist said there was no genetic explanation for his illness and there were "no predisposing factors" that they knew of.
"This was a really unlucky hand, and it almost made it so I couldn't come home to my family and take care of my wife and daughters," he said. "It drastically changed my life. We never know how much time we have, and we all think we have lots of time until we don't.”
The experience has affirmed his commitment to living a health lifestyle. Maynard says staying physically and mentally fit is one of the "best life insurance policies a person could take out."
“It’s changed my perspective on what I say yes to and the commitments I make,” he said. “I'm saying yes to things that I truly want to because it was made extra clear for me how much time we do or don't have."
The road ahead
Although Maynard is on the road to recovery, the threat of HLH potentially returning looms. In case of a recurrence, a bone marrow transplant might be necessary — a process his medical team has already started exploring.
“There's a 20 to 30 per cent chance of recurrence for my type of HLH, but that also means there’s a 70 to 80 per cent chance it doesn’t happen again,” he shared.
Currently, Maynard is considered immunocompromised, which means he has to be extra cautious about exposure to illnesses. He remains vigilant about his health, practicing good hygiene and regularly checking in with himself.
“It's easier said than done when you've got young kids at home,” he added with a smile.
