Importance Score: 35 / 100 🔵
At just 20 years old, Chantal Pelletier, a young personal support worker and athlete, faced an unexpected health crisis. The active Canadian native, once a kung fu black belt in peak physical condition, suddenly found her body failing her, leading to a diagnosis of dilated cardiomyopathy, a serious heart condition. This is her journey.
Unexpected Symptoms and Initial Misdiagnosis
Initially in excellent health, Pelletier experienced a rapid decline. Simple daily activities, such as preparing meals or showering, became overwhelming, leaving her dizzy and severely fatigued.
“I started struggling to stand long enough to cook for myself without feeling completely drained,” she recounted. “Showers became worrisome; I had to keep the bathroom door unlocked so my roommate or boyfriend could check on me because I felt like I was going to faint each time.”
Even climbing the four flights of stairs to her apartment in New Brunswick, Canada, previously an effortless task, transformed into a significant challenge.
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Doctors initially suspected common conditions like anemia or hypothyroidism, but tests ruled out these possibilities.
Diagnosis: Dilated Cardiomyopathy
By October 2024, Pelletier’s health had deteriorated further. Following a scan at Grand Falls General Hospital that indicated gallstones, she was transferred to Edmunston for surgical removal. However, instead of improving, her condition worsened, necessitating admission to the Intensive Care Unit (ICU) at Institut Universitaire De Cardiologie Et De Pneumologie de Québec.
In the ICU, medical professionals monitored her heart and uncovered a startling revelation: her resting heart rate was an alarmingly high 168 beats per minute, nearly double the normal upper limit.
Further investigations, including an echocardiogram, revealed an enlarged heart functioning at a critically low capacity of just five to ten percent.
She received a diagnosis of dilated cardiomyopathy. This condition occurs when the heart’s primary pumping chamber, the left ventricle, becomes weakened and distended, impairing its ability to effectively pump blood, which can lead to fluid accumulation in the lungs and body.
“With each heartbeat, more and more blood remained,” Pelletier explained. “My heart was trying to work, but it simply couldn’t keep up.”
Within months, the once-active athlete became bedridden as her heart rapidly deteriorated.
Doctors were further alarmed to discover she barely had a palpable pulse, highlighting the rapid progression of her heart failure.
The Football-Sized Heart and Genetic Link
“My heart was compared to the size of a football,” Pelletier stated, recalling the moment her cardiology team confirmed the diagnosis of dilated cardiomyopathy.
Dilated cardiomyopathy can lead to blood stagnation, increasing the risk of clot formation in the heart and potential strokes.
Research suggests that approximately one in 2,700 individuals are affected by dilated cardiomyopathy, with genetics being a known contributing factor.
Genetic testing revealed that Pelletier, along with her father and sister, carries the BAG3 genetic mutation, predisposing them to the condition.
“Like any unexpected diagnosis, it was surprising, but my sister had been diagnosed with the same condition in 2011 and successfully received a heart transplant and recovered,” Pelletier shared. “I knew that I could still survive and live a fulfilling life, even if I had to temporarily put my life on hold to prioritize my health.”
Treatment and the LVAD
Pelletier was treated with diuretics to eliminate excess fluid buildup. These medications, commonly known as water pills, promote fluid removal by increasing urination, aiding the kidneys in removing excess salt and water and reducing fluid retention.
After reducing the fluid overload, she underwent surgery to implant a left ventricular assist device (LVAD).
An LVAD is a mechanical pump surgically implanted in the chest to support heart function in patients with severe heart failure. It assists the weakened heart in pumping blood throughout the body.
Life Dependent on a Machine and the Wait for Transplant
Currently, Pelletier must monitor her vital signs every morning and evening and relies on the LVAD to sustain her life.
Due to the LVAD’s continuous power requirement, she must sleep with it connected to a wall outlet and carry spare rechargeable batteries during the day.
Disruption of the LVAD’s function could lead to severe complications, including infection, bleeding, blood clots, and even death.
Pelletier is now living at home in New Brunswick and travels to Québec City monthly for medical appointments. She is awaiting placement on the heart transplant list, focusing on improving her overall health to prepare for the surgery.
Road to Recovery and Community Support
Reflecting on her recovery journey, Pelletier described the challenges of regaining lost abilities after a near week-long coma. “I had to relearn how to speak, eat, drink water, sit up, and walk because I had lost all those abilities.”
“It was frustrating to be restricted from basic activities I could previously do, but I remained calm and determined to return to my pre-surgery condition.”
Pelletier has adapted relatively quickly to living with the LVAD.
“Initially, I was discouraged and worried about adjusting to life with an LVAD, but I stayed positive and took it one day at a time with patience.”
“In quiet moments, I can hear the LVAD pumping, which sounds like a fax machine, and it was surreal initially.”
“I hear the hum mostly at night, but I’ve become accustomed to it; it’s almost like white noise now.”
Financial Strain and Hope for the Future
Unable to work or attend school, Pelletier’s friends and family initiated a GoFundMe campaign to help with her expenses, which has raised over $11,405 ($15,862 CAD) to date.
LVAD implantation costs can range from $175,000 to $200,000 (approximately $243,000 to $278,000 CAD) per hospitalization, with first-year expenses potentially reaching $222,460 (almost $310,000 CAD).
Pelletier acknowledges that “some days are easier than others” as she awaits a call about a potential donor heart.
She expressed “mixed emotions” about receiving a donor heart but recognizes it as her best option.
“I am looking forward to resuming my life,” she said.
“And I am deeply grateful for the support and encouragement I’ve received online and in my community.”
“Managing my finances while adjusting to a lifestyle with specific dietary needs, travel costs for appointments four hours away, and expensive, uninsured medications has been challenging.”
“I am incredibly thankful for the funds raised so far; it has been a significant help. Without it, I don’t know where I would be financially right now.”